PAEDIATRIC PALLIATIVE CARE MANUAL FOR HOME BASED CARERS

Transcription

1 PAEDIATRIC PALLIATIVE CARE MANUAL FOR HOME BASED CARERS UNIVERSITY OF KWAZULU-NATAL Nelson R Mandela School of Medicine Enhancing CARE Initiative

2 PAEDIATRIC PALLIATIVE CARE MANUAL FOR HOME BASED CARERS

3 Copyright 2005 The Authors: Nicola Willis, Marcus McGilvray Lisa McNally, Robert Pawinski. Not for use for profit. For widespread dissemination in the NGO and Public Health Sector. Authors: Nicola Willis, Marcus McGilvray Lisa McNally, Robert Pawinski. Cover Photograph: Roger de la Harpe. Used with permission. 1st Edition, May 2005 Please contact for comments, suggestions or errata. ISBN

4 PAEDIATRIC PALLIATIVE CARE MANUAL FOR HOME BASED CARERS Acknowledgements A collaboration between the Enhancing Care Initiative, KZN PLUS, the Nelson R Mandela School of Medicine, South Coast Hospice, AFRICAID and the Institute of Child Health, London. Made possible with a grant from the British High Commission, Pretoria, RSA, Small Grants Scheme.

5 Contributors Nicola Willis BN (Hons) Paediatric HIV Specialist Nurse Africaid A Trans-African HIV Nursing Expedition Durban, South Africa Nicola@africaid.co.uk Marcus McGilvray BA (Hons) Adult HIV Specialist Nurse Africaid A Trans-African HIV Nursing Expedition Durban, South Africa Lisa McNally BSc (Hons) MRCPCH DTM&H Centre for International Child Health Institute of Child Health London UK. WC1N 1EH and and PO BOX 7012 Northampton, NN3 3YH, UK Department of Paediatrics Nelson R Mandela School of Medicine University of KwaZulu-Natal Durban, South Africa mcnally11@ukzn.ac.za Dr Robert Pawinski MB BChb (UCT), DipOBS (SA), DTMH (LSHTM) Director, Enhancing Care Initiative KZN Plus Doris Duke Medical Research Institute Nelson R Mandela School of Medicine University of KwaZulu Natal Durban, South Africa pawinskir@ukzn.ac.za We would also like to thank the following people and organisations for their participation and support: Kath Defilippi and the South Coast Hospice team in Port Shepstone, South Africa The Community Hospice, New York - South Coast Hospice's US partner, particularly Dr Jennifer Pearce, Paediatric Oncologist Business Connexion, South Africa This manual has been greatly aided in its development by the generous donation of photographic material from: Teaching-aids at Low Cost UK (TALC-UK) All rights reserved Frank Hijlkema, The Netherlands CDC Image Library Note: The inclusion of a child s photograph in this manual does not imply that they are HIV infected. 2 Paediatric Palliative Care Manual for Home Base Carers

6 Foreword In Sub-Saharan Africa, and other resource constrained settings, mother-to-child transmission is, after heterosexual transmission of HIV, the most common form of transmission. This burden of new disease in an already under-privileged population by health services in resource constrained settings, potentially threatens the optimal health of children, and sabotages the future generation of populations. Priorities are often given to adult patients, given the large numbers and greater demand for access to health care. This manual is one of the first of its kind in Southern Africa to address these needs by bringing together partners and resources from various sectors to address local needs on the ground. The request from South Coast Hospice, and the co-incidental availability of human capacity from Africaid and the Institute of Child Health, London, geared funds from the British High Commission, South Africa to ensure the initiation of the transfer of skills to trainers in a potentially sustainable Paediatric Palliative Care Manual for Home Based Carers. The hope is that this manual is widely used throughout resource constrained settings by the public and NGO sector, assisting trainers to train Home Based Carers in the delivery of quality, comprehensive palliative care for children and their families living with HIV and AIDS. Dr Robert Pawinski Director, Enhancing Care Initiative KZN Plus Paediatric Palliative Care Manual for Home Bases Carers 3

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8 Table of Contents Introduction 7 Modules 9 Module 1: HIV in Children 9 Module 2: Role of The Home Based Carer 19 Module 3: Impact of HIV on Children 30 Module 4: Helping Children to Cope with HIV 37 Module 5: Talking With Children about HIV 46 Module 6: Nutrition in Children with HIV 56 Module 7: Medicines for Children 69 Module 8: Pain 79 Module 9: Skin Problems 89 Module 10: Oral Problems 98 Module 11: Fever 105 Module 12: Acute Respiratory Infections 113 Module 13: Diarrhoea and Dehydration 117 Module 14: Neurological Problems 125 Module 15: Danger Signs 131 Module 16: Antiretroviral Drugs 135 References 148 Resources 150 Appendices 151 Appendix i: Suggested Training Programme 151 Appendix ii: Course Evaluation Form 152 Appendix iii: Home Based Care Givers Scope of Practice 154 Appendix iv: Pain Rating Scales for Children 155 Appendix v: IMCI Guidelines (2002) Management of a Child with Diarrhoea 156 Appendix vi: Manual Evaluation Help us improve this manual! 157 Paediatric Palliative Care Manual for Home Bases Carers 5

9 Introduction A. Background to the Development of this Manual The HIV pandemic shows no signs of abating and Sub-Saharan Africa continues to bare the brunt of this disease. The effect on children in the region is devastating. It is estimated that there are 2.1 million children living with HIV around the world. 1.9 million of these children live in Sub-Saharan Africa. As the pandemic progressed last year, 5.2 million children in this region became orphans (UNAIDS, UNICEF, UNAIDS, 2004). South Africa remains home to the highest number of people living with HIV. With 5.1 million people infected with the virus, the country s children are facing the full impact of this disease. 230,000 South African children are estimated to be living with HIV and 1.1 million children have been orphaned (UNAIDS, 2004). It has been estimated that 90,000 HIV infected infants are born annually in South Africa (South African Department of Health, 2003). Latest research found HIV prevalence in South African children aged 2 to 18 years to be 5.4% (Brookes et al, 2004). Kwa-Zulu Natal is particularly hard hit. In 2002, 36.5% of pregnant women booking for antenatal care were HIV-1 infected. Infected children and their care givers commonly face the profound physical, emotional and social impact of HIV with little professional care and support. With an increasing number of parents dying from HIV, the care of orphaned children continues to fall on the extended family. The burden of care for a sick child is often met by an elderly grandmother or brother/sister of the child, who themselves are often children. The effect on these children and their families is catastrophic. It has been shown that Home Based Care programmes can help to ensure that people with HIV in resource limited settings have access to compassionate care and support within their own homes. While these programmes have traditionally focused on the needs of adults, the quality of life for children with HIV can be dramatically improved through comprehensive home based care. As children are physically and emotionally different to adults they require care and support that is sensitive to these differences. South Coast Hospice, Port Shepstone and Church of Scotland Hospital, Tugela Ferry are pioneers of Home Based Care Programmes, with extensive experience in training and supervising Home Based Carers in the delivery of palliative care for adults with HIV in their own homes. In response to the growing number of children with HIV in their care, both centres are rising to the immense challenge of providing home based palliative care for children infected with HIV in Kwa-Zulu Natal. This training programme has been designed and developed with the intention of equipping Home Based Carers with the skills, knowledge and tools required to offer the highest standard of care for children with HIV. Home Based Carers are at the forefront of palliative care for people with HIV in South Africa. Training and support for these carers is pivotal to the provision of optimal care for children with HIV. 6 Paediatric Palliative Care Manual for Home Base Carers

10 B. Aim of the Training Manual This manual will provide trainers with all the materials and resources needed to deliver effective training sessions and in turn enable Home Based Carers to: Recognise the diverse needs of children with HIV, across the continuum of care from diagnosis to end of life care Recognise the immense need of primary care givers/ family for support in the care of an infected child Recognise and assess common signs and symptoms associated with HIV infection in children Make prompt referrals to the Professional Nurse Supervisor or local clinic Manage symptoms as supervised by the Professional Nurse, within the Home Based Carer s scope of practice Ensure prioritisation and follow-up of children where applicable Educate primary care givers how to assess their child s health and identify symptoms requiring intervention Educate primary care givers about Infection Control Communicate in a child-sensitive manner, conducive to assessing and meeting the needs of each individual child Understand some of the immense challenges faced by children taking ARVs Provide support for children on ARVs and their families This manual has been designed as additional training for Carers with prior training in Home Based Care. The content of this manual is therefore specific to the care of children with HIV/AIDS. C. Training Course Modules The training programme comprises 16 modules, addressing the physical, social and psychological issues impacting on children with HIV. Ideally, the course will be enhanced with a ward teaching session where theory may be put in to practice. Module 1: HIV in Children Module 2: Role of the Home Based Care Giver Module 3: Impact of HIV on Children Module 4: Helping Children to Cope with HIV Module 5: Talking with Children about HIV Module 6: Nutrition Module 7: Medicines for Children Module 8: Pain Module 9: Oral Problems Module 10: Skin Problems Module 11: Fever Paediatric Palliative Care Manual for Home Bases Carers 7

11 Module 12: Acute Respiratory Infections Module 13: Diarrhoea and Dehydration Module 14: Neurological Problems Module 15: Danger Signs Module 16: Antiretroviral Drugs for Children D. Use of the Manual This training manual has been designed to provide trainers with a flexible tool which may be utilized and adapted according to their specific needs. The course can be delivered as a whole or used in part, according to the needs of the Home Based Carers and the time available. Each module contains: Learning objectives: to inform trainer and trainees of module content and expected learning outcomes PowerPoint presentations with accompanying lecture notes: to assist trainers in the delivery of training sessions Interactive, participatory exercises: are included within the slide notes to reinforce slide content The manual also contains: Reference and Resource List: to provide trainers with further background information for the preparation and delivery of training sessions Suggested Training Program Itinerary: to provide trainers with a time frame for the delivery of individual modules and the training in its entirety (Appendix i). Course Evaluation Forms: to provide course developers and trainers with a means of evaluating the suitability and effectiveness of course content and training methods in addressing the training needs of Home Based Carers (Appendix ii). Home Based Care Givers Scope of Practice: as defined by South Coast Hospice (2003) (Appendix iii). The Manual is accompanied by: A Workbook for trainees, containing all slides form each module CDRom containing the Trainers Manual, Trainees Workbook and 16 Powerpoint Slide Presentations 8 Paediatric Palliative Care Manual for Home Base Carers

12 Module 1: HIV in Children Module Objectives To review the current status of paediatric HIV infection in South Africa To review the various causes of HIV infection in children To introduce strategies for preventing Mother to Child Transmission of HIV To discuss the challenges associated with diagnosing children with HIV To describe the common course of HIV disease progression in children To introduce the needs of children infected with HIV Slide Presentation: HIV in Children HIV in Children Paediatric HIV Home Based Palliative Care Training Programme Funded by British Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children infected with HIV. Ask the trainees for their experiences, challenges they face and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. HIV in Children Around the World in million children living with HIV/AIDS 640,000 children newly infected with HIV Half a million children died due to HIV/AIDS Of the 5 million infants infected with HIV since the beginning of the pandemic 90% were born in Africa 2. The figures are overwhelming. As the HIV pandemic continues, more and more children are being infected with HIV each year. (UNAIDS, 2004) Paediatric Palliative Care Manual for Home Bases Carers 9

13 HIV in Children in KZN and South Africa >90,000 babies born each year with HIV (DoH, 2003) 37.5% of women attending for antenatal care in KZN, are HIV positive (DoH, 2003) In some parts of KZN, this increases to more than 50% 60% of children admitted to paediatric wards in Durban are HIV positive 3. Current and future figures may be less than those stated in the slide due to the introduction of prevention of Mother to Child Transmission pmtct) programmes (to be discussed later). However, over the past few years it has been estimated that 90,000 babies were being born with HIV each year in South Africa (Department of Health, 2003). KwaZulu-Natal is located within the epicentre of HIV infection. How do Children get HIV? More than 90% of children with HIV acquired it from their mother, during Pregnancy Child Birth Breastfeeding (UNAIDS, 2002) TALC TALC 4. Ask trainees for their thoughts on how children are infected with HIV. In 2002, UNAIDS estimated that more than 1500 children become infected with HIV every day. The vast majority (more than 90%) acquire the infection from their mother. It may be acquired during pregnancy, labour, delivery or through breastfeeding (UNAIDS, 2002). When is HIV transmitted? Out of 100 children, how many children will be infected... during pregnancy? 5-10 during delivery? after birth? So when is HIV most likely to be transmitted? During pregnancy, delivery or breastfeeding? Ask trainees, out of 100 children born to HIV-positive mothers, how many will be infected during pregnancy? Single click provides the answer of 5-10 (i.e. 5-10%) and removes 5 children from the initial 100. Now ask how many children will be infected during delivery? Single click provides the answer of (i.e %) and removes another 10 children from the initial 100. Finally, ask trainees how many children will be infected during breastfeeding? Single click provides the answer of (i.e %) and removes another 10 children. This slide demonstrates that the greatest risk of transmission is during delivery and during breastfeeding. It also demonstrates that a large number of children born to HIV-infected mothers will not be infected. 10 Paediatric Palliative Care Manual for Home Base Carers

14 Increased Risk of MTCT When mother s viral load is high A women becomes infected with HIV during pregnancy or breastfeeding A pregnant woman has HIVrelated illness Interventions during delivery Artificial rupture of membranes Epi siotomy Blood transfusion 6. Various factors increase the risk of Motherto-Child-Transmission (MTCT). Firstly, if the mother s viral load (amount of virus in the blood) is high there is a greater risk of transmitting the virus. This may occur when the mother is sick or newly infected. Secondly, interventions during delivery may increase the risk of the baby coming in to contact with maternal HIV-infected fluids. Examples are listed here. Increased Risk of MTCT Mixed Feeding Increases the risk of MTCT Breast Infections Thrush or brea st absce sse s provide a route for transmission of HIV during breast feeding Oral infections A child with thrush may have sore s or broken skin in the mouth, allowing transmission of HIV All Images 7. Mixed Feeding (i.e. some breast feeding and some formula feeding) may increases the risk of transmission. This will be discussed further in Module 6: Nutrition. Breast infections increase the risk of HIV-infected fluids being passed through sores and cracks during breast feeding. Similarly, if the child has sores and cracks in the mouth, these serve as entry points for HIV in the breast milk and increase the risk of HIV transmission from mother to child. Preventing Mother to Child Transmission Prevention of Mother-to- Child-Transmission programmes have brought new hope BUT not everybody will be reached and as adult infection rates continue to increase, children will continue to be infected AND for an overwhelming number of children already infected, these programmes are too late 8. Fortunately, it has been found that a number of different interventions can significantly reduce the risk of Mother-To Child-Transmission of HIV. In Sub-Saharan Africa, this primarily involves the use of the ARV drug Nevirapine and the avoidance of breastfeeding (this difficult issue of breastfeeding will be discussed in Module 6: Nutrition in Children with HIV). Nevirapine is given to the mother before birth and reduces the amount of virus in the blood for a period of time. There is therefore less virus in the body to be transmitted to the child and the risk is reduced. Nevirapine is also given to the baby at birth. However, these programmes are only just beginning and a great deal of work is to be done before all mothers can benefit from them. So children will continue to be born with HIV. And for millions of children infected with HIV around the world, the programmes are too late. Paediatric Palliative Care Manual for Home Bases Carers 11

15 Other Ways Children are Infected with HIV Sharing of non-sterile instruments Sexual Abuse HIV-infected blood transfusion Injecting Drugs All Images 9. Over 90% of children are infected from their mother. The remaining 10% are infected in similar ways to adults such as the use of non-sterile instruments and sexual abuse.this has not been helped by myths stating that HIV may be cured by having sex with a virgin. Children are being infected by contaminated blood where screening processes are limited or non-existent. Finally, although a small percentage of the children infected with HIV, IV drug use is a known cause. 10. So how does HIV work? Ask trainees if they are able to describe the way HIV affects a child. The process is the same as adults. This simplified diagram uses soldiers to represent the white blood cells of the immune system (or more specifically, CD4 cells). Normally, the body has lots of soldiers circulating in the blood stream. If a germ, such as a virus or bacteria enters the body (click), the soldiers fight that germ, to protect the body from harm (click). NB even with lots of soldiers, they may still need help with medicines like antibiotics. 11. When HIV enters the body (click), it damages the soldiers (CD4 cells) that normally fight it. The soldiers become fewer and fewer (click). Therefore, when germs enter the body (click), there are fewer soldiers to fight against them so the person becomes sick. Over time, HIV reproduces (click) and there is more and more virus in the body. At the same time, more and more soldiers are damaged (click) and more infections occur (click) as the body cannot fight them. These are known as opportunistic infections as they take opportunity of the weakened immune system. 12. Eventually, there is so much HIV in the blood (viral load) and very few soldiers (CD4 cells) so the body is susceptible to more and more severe infections opportunistic infections (click). Ask trainees if they can name some of the Opportunistic infections commonly associated with HIV infection in children. These will be discussed shortly. 12 Paediatric Palliative Care Manual for Home Base Carers

16 Course of HIV Infection in Children HIV Infection Seroconversion Sometimes a flu-like illness TALC Latent Infection Asymptomatic HIV-Related Illness Related directly to HIV infection Related to immune deficiency AIDS 13. So the overall effect of the HIV virus on a child is similar to that of an adult. Following infection with the HIV virus, seroconversion takes place. This may be accompanied by a flu-like illness but may not be recognised as anything severe. A period of latency then follows, in which the child is infected with HIV but is asymptomatic. The virus is slowly replicating and damaging the immune system but there are no symptoms. Like adults, this asymptomatic stage will come to an end when the child starts developing a) illnesses resulting from the direct damage of HIV and/or b) opportunistic infections which he/she cannot fight off due to a weakened immune system. As the child s condition deteriorates, he/she will progress to AIDS. Children differ to adults in that they progress from seroconversion to HIV-related illness much more quickly. In other words, the asymptomatic period is usually much shorter in children. One reason for this is that their immune systems are immature and still developing. Prognosis for Children with HIV These children were all born with HIV In South Africa, how many of these children will reach their 1 st birthday? 4 th Birthday? 5 th Birthday? 14. To demonstrate the prognosis for children born with HIV in South Africa, ask trainees how many of the children in the slide do they think will reach their first birthday. Single click will remove half the children, showing only 50% of children born with HIV in South Africa will reach their 2nd birthday (or 50% will die before their first birthday). Another single click will remove another 10% of the original number, showing another 10% of children will not reach their fourth birthday. 40% of children will remain on the slide, showing only 40% of children born with HIV in South Africa reach their fifth birthday. Common Symptoms of HIV Weight loss Chronic diarrhoea Failure to Thrive Oral Thrush (often recurrent after treatment) Fever Increased frequency of common childhood illnesses, eg ear infections, pneumonia) All Images 15. Ask trainees if they are able to name any signs and symptoms of HIV in children. The most common are as listed in the slide. The pictures are examples of children with (from top right, clockwise) dehydration from diarrhoea; severe oral thrush; a growth chart showing failure to thrive; malnutrition and acute respiratory infection. Many of the recurrent infections are common to all children but the infections and their symptoms are usually more frequent, more severe and more difficult to treat in children with HIV. Chronic gastroenteritis and TB are also common. Paediatric Palliative Care Manual for Home Bases Carers 13

17 Common Symptoms of HIV All Images 16. This slide uses pictures to demonstrate the wide variety of symptoms commonly seen in children with HIV. These and many more will be discussed throughout this training programme. Ask trainees if they are familiar with any of the conditions in the slide. From top left to right: 1) abscesses (on the head) 2) thrush (on the neck) 3) dermatitis (on the back) 4) dermatitis (on the face) 5) fungal infections (ringworm on the hand), 6) neurological problems (loss of muscle control in the face), parotitis (swollen parotid glands). Bottom left to right: enlarged liver and spleen, recurrent respiratory infections, meningitis (post- meningitis) and shingles. Where a child presents with either one or a combination of these symptoms, this may be strongly suggestive of HIV infection. Some AIDS-defining Illnesses in Children Candidiasis of bronchi, trachea or lungs Oesophageal Candidiasis PCP Pneumonia Recurrent Pneumonia HIV Encephalopathy Kaposi s sarcoma Toxoplasmosis of the brain Wasting Syndrome Herpes simplex, longer than 1 month Lymphoma 17. The 2 previous slides addressed common symptoms of HIV infection. These indicate that the child may well be infected with HIV. HIV infection is causing symptoms directly related to HIV or as a result of damage to the child s immune system. As the child becomes progressively weaker, he is susceptible to more severe opportunistic infections and he is said to have AIDS, Acquired Immune Deficiency Syndrome. The slide lists some AIDS-defining conditions for children (i.e. HIVpositive children with these conditions are said to have AIDS). Some are AIDS-defining for adults too. Symptoms of HIV/AIDS Symptoms seen in common childhood illnesses last longer and are more difficult to treat Children do not respond so well to treatment More likely to suffer life-threatening complications Children with HIV die from common childhood illnesses 18. In summary, children with HIV are more susceptible to infections. They get common childhood illnesses more often than other children and these are usually more severe, more persistent and more difficult to treat. Children usually develop symptomatic HIV and progress to AIDS much more quickly than adults and their prognosis is very poor. They are more likely to suffer life-threatening complications of infections. It is often common childhood illnesses which cause death in children with HIV. 14 Paediatric Palliative Care Manual for Home Base Carers

18 Does Grace have HIV/AIDS? Grace is 6 months old She is well and healthy. Possibilities include: HIV, TB, malnutrition, measles Two months later, Grace is wasted, has a chronic cough and skin rash. 19. Having discussed some of the more common symptoms of HIV, the following slides will use the case study of Grace to explore the diagnosis of HIV infection in children. The picture on the left shows Grace at 6 months of age. She is well and healthy. The picture on the right shows Grace at 8 months, two months later. She is a different child. Her mother has brought her to clinic as she has been coughing for the last month and has a skin rash. She is also wasted. Her mother does not know her own HIV status. Ask trainees if there is any possibility that Grace may have HIV and to justify their answer. HIV is possible. Grace now has a combination of symptoms commonly associated with HIV. However, HIV is not the only possibility as TB, malnutrition or measles may also cause Grace s symptoms. So how could they determine whether Grace has HIV? Testing for HIV: Antibody Test (ELISA) When the HIV virus is in the blood, the body makes antibodies against it The Antibody Test (ELISA) looks for these antibodies If they are present in a sample of blood, we know HIV must be in the blood A child 18 months or older may be tested using this ELISA test Testing for HIV: Antibody Test (ELISA) Problem!! A mother with HIV will have antibodies in her blood During pregnancy, she will pass these to her baby These antibodies will stay in the baby s blood for up to 15 months A positive antibody test in an infant younger than 15 months may have detected the mother s antibodies This test is unreliable for diagnosing children less than 15 months A positive test tells us the mother has HIV 20. Ask trainees if they are familiar with the ELISA test and what they understand by it. When an individual is infected with HIV, their body will make antibodies to the HIV. Antibodies to HIV in the blood therefore confirm that HIV is in the blood. The ELISA test looks for these antibodies. A blood sample is taken and tested using the ELISA test. If the ELISA test is positive, antibodies to HIV have been found in the blood. The individual has HIV infection or is HIV positive. This test may be used for adults and children older than 18 months. 21. Ask trainees if they know why the ELISA test may not be used to diagnose HIV in children less than 15 months. A mother infected with HIV will have made antibodies to HIV. During pregnancy, her antibodies to HIV will pass to the unborn child. When the child is born, the maternal antibodies to HIV will remain in the child s blood for up to 15 months. If the ELISA test is used on the child, the test will find antibodies to HIV but these may be the mothers. There is no way of telling whether these are the mother s antibodies or antibodies that the child has made due to being infected with HIV. After 15 months of age, the maternal antibodies will have cleared and any remaining will be the child s own. The ELISA test cannot therefore be used to test for HIV in a child less than 15 months. What we do know is that a positive ELISA test in a child less than 15 months confirms that the mother is HIV positive. Paediatric Palliative Care Manual for Home Bases Carers 15

19 Other Tests for HIV How do we confirm and test for the virus? DNA PCR tests Viral culture P24 antigen How do we know how much virus is in the blood? Viral Load Test Unfortunately these tests are: Complicated Expensive 22. So Grace is too young for the ELISA test to CONFIRM she has HIV. There are other tests which look for the actual HIV virus itself (DNA PCR test; viral culture and P24 antigen). The actual amount of HIV virus in the blood can be detected using the Viral Load test. However, these tests are extremely expensive and complicated. They require complex laboratory equipment and highly specialised personnel. Whilst this may change over time as new technology becomes available, in many places around the world, health professionals would make a provisional diagnosis based on Grace s clinical symptoms or wait until 15 months of age when she may be tested using the ELISA test. DNA testing is now available in South Africa as part of the ART roll-out. Testing a Child for HIV Parents or Carers of the child MUST receive counselling and sign consent before the child is tested for HIV How do we know how strong the immune system is? It is possible to count how many soldiers (CD4 cells) there are in a sample of blood from the child This is a CD4 count and tells us how strong the immune system is Lots of soldiers (high CD4 count) tells us the immune system is still fairly strong and may be able to fight infections Few soldiers (low CD4 count) tells us HIV has destroyed lots of them and the immune system is weak As the actual CD4 count varies with age the CD4% is used in children. 23. HIV testing in children has enormous ethical implications. A child has just the same rights as an adult but these are at risk of being violated as the child is too young to understand or express these rights. A child must only be tested for HIV where the individual with legal responsibility for the child is present to act in the best interests of the child. This parent or carer must have received pre-test counselling in order to fully understand the test and its implications. A consent form must be signed by the parent/carer prior to the test. 24. In addition to the tests which confirm HIV is in the blood (ELISA, DNA PCR, P24 antigen, Viral culture) and how much HIV is in the blood (Viral load), it is also possible to measure the effect of HIV on the immune system. Drawing on earlier slides, ask trainees to summarise how HIV affects the body. A CD4 test actually counts the number of strong, healthy CD4 cells (soldiers) in a small sample of blood. This provides an indication of the damage that HIV is causing to the immune system and is extremely useful in assessing the risk of developing infections and the child s prognosis. In children as the CD4 count varies with age the CD4% is used. 16 Paediatric Palliative Care Manual for Home Base Carers

20 Remember, at 6 months of age, Grace was well and healthy Grace Two months later, she is wasted, has a chronic cough and skin rash Grace s blood te st shows she is Elisa positive What do you tell the mother? What is Grace s prognosis? 25. So how should Grace be managed? She was well two months ago but now has symptoms commonly associated with HIV. Her mother was counselled and she consented to an ELISA test for Grace. The test was positive. What should Grace s mother be told? What is Grace s prognosis? This is discussed in the following slides. Grace Issues: A positive ELISA shows that Grace has been exposed to HIV The Elisa must be repeated at 15 months to be sure However her symptoms strongly suggest that she is infected The ELISA test shows that her mother IS HIV positive Her mother may or may not know that she is infected 26. The positive ELISA test confirms that Grace has been exposed to HIV that is, she has antibodies to HIV in her blood but there is no way of knowing whether these came from her mother during pregnancy, delivery or through breastfeeding or whether they are antibodies which Grace has made herself in response to the HIV virus in her body. The positive result confirms Grace s mother has HIV. When her mother consented to the test for Grace she will have been counselled that a positive result would confirm HIV infection in the mother. But the mother may not be expecting this result. Grace s symptoms and her mother s diagnosis strongly suggest that Grace has HIV although this has not been confirmed using laboratory testing. Grace Sensitively assess: Does her mother have any idea what may be wrong with Grace? What understanding of the ELISA test does she have? Has she had an HIV test herself? Was she offered pmtct intervention? 27. These are all issues which should have been explored in counselling for the mother prior to Grace s test. However, this situation must be handled extremely sensitively. These are some of the questions which the mother should be asked in order to assess any existing concerns that she may have regarding HIV herself or that she may have passed it on to Grace. If she understands the ELISA test fully, she should be aware that a positive result would suggest she has HIV herself. She may already have had an HIV test and not mentioned this previously. If the mother received pmtct care, this will provide useful information regarding any interventions that the mother received which may have prevented transmission. Paediatric Palliative Care Manual for Home Bases Carers 17

21 Grace Sensitively Counsel the Mother: The ELISA test shows that Grace has been exposed to HIV This means the mother must have HIV herself Although Grace may not be infected, her illnesses suggest that she is The test will need to be repeated at 15 months to be sure Between now and then, Grace needs: - To start Bactrim prophylaxis - Good nutrition - Vitamins - Monthly checks 28. The mother requires careful counselling by those trained in issues relating to both Grace and her mother. The mother should understand that whilst Grace s diagnosis cannot be confirmed using the ELISA test, it does confirm that she herself has HIV. Grace s symptoms and her mother s diagnosis strongly suggest that Grace has HIV. However, this can only be confirmed at 15 months of age if breastfeeding has stopped unless other laboratory tests become available. In the meantime, Grace needs all the help she can get to become healthy and strong again. The importance of prophylaxis, good nutrition, vitamins and monthly checks at clinic should be explained. These will all be discussed throughout the training programme. Summary HIV damages a child s immune system so that he cannot fight infections 29. Ask trainees to summarise what they have learnt during this module and how they may apply it to practice with children in their care. Time from infection to the development of AIDS, and finally to death, is generally much shorter in children than in adults Normal childhood illnesses are more frequent and more severe A larger proportion of children will develop serious illness and death within the first year or two of life Testing children for HIV before 15 months of age requires a DNA test. 18 Paediatric Palliative Care Manual for Home Base Carers

22 Module 2: Role of the Home Based Carer Module Objectives To demonstrate that children with HIV have a variety of physical, psychological and social needs To define palliative care for children with HIV To demonstrate the importance of the role of the Home Based Care Giver in providing palliative care for children with HIV Slide Presentation: Role of the Home Based Carer Role of the Home Based Carer Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria, 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children infected with HIV. Ask the trainees for their experiences, challenges they face and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Small Grant Scheme Not just little adults ALL children have very special needs As a child grows, they have to learn, adapt and cope with the world around them They have physical, emotional and social needs that are very different to adults In the world of a child with HIV, there are a great number of challenges they must face 2. Anyone involved with the care of children, whether infected with HIV or not, needs the fundamental understanding that children are not just little adults or little people. Children have very specific needs and these are changing all the time as the child grows and develops. They must learn to adapt, cope and respond to the world around them. A child is on a journey of rapid physical, psychological and social change. Their needs are very different to adults and appropriate care for children recognises and understands these needs. Children with HIV face even greater challenges. These will be introduced in this module but explored in greater depth throughout this training programme. Paediatric Palliative Care Manual for Home Bases Carers 19

23 faces a progre ssively terminal disease experiences painful, distressing sicknesse s is dependant on others for care, love & support Physical Needs 3. Firstly, a child with HIV has overwhelming physical needs. HIV infection is a terminal illness. As yet, there is no cure and the child faces inevitable death at some stage. The child becomes progressively weaker as the immune system and other parts of the body are damaged. The child is more susceptible to opportunistic infections. The symptoms of these infections and conditions are commonly painful and debilitating and dramatically affect the child s quality of life remaining. Children are entirely dependent on their parents or carers and need immense love and support to help them cope with the physical impact of HIV. The physical needs of children will be explored further in later modules. Emotional Needs caring for a sick relative grieving the loss of parents or siblings unable to understand why he is ill unable to engage in normal child activities when sick Numerous stressful investigations and procedures 4. Secondly, children with HIV have significant psychological or emotional needs. Whilst these may be more difficult to identify than the more obvious physical needs, they are just as important. Children with HIV face tremendous emotional challenges as a result of both their own and their relative s(s ) diagnoses. When a child should be playing and enjoying childhood, he/she faces recurrent illnesses, the need to care for sick relatives, the loss of relatives and recurrent traumatic medical procedures. These emotional needs will be discussed further in later modules. Social Needs May not be cared for properly as parent is sick May be cared for by elderly grannies May be cared for by siblings Loss of household income Living in poverty Inadequate nutrition, sanitation Poor access to health services Future care for the Child? May be stigmatised by diagnosis 5. Thirdly, just a few examples of the complex social needs of children with HIV are listed here in the slide. These are usually extremely challenging and directly influence the physical and emotional needs of the child. Multidisciplinary team involvement is essential in order that these needs be met. These will be discussed further in later modules. 20 Paediatric Palliative Care Manual for Home Base Carers

24 What is Palliative Care? To palliate is to alleviate or ease Whilst it IS NOT about curing disease, it IS about Alleviating symptoms by treating and controlling disease Improving quality of life 6. Ask trainees to define Palliative Care. What does it mean to them and how does it relate to children with HIV? To palliate is to alleviate or ease. Palliative care aims to alleviate symptoms, improve quality of life and relieve the burden of illness on the patient and family. Relieving the burden of illness on patients & family What is Palliative Care? Palliative care has traditionally been seen as end of life care and hospice However, it is much more than this! HIV places considerable physical, emotional, social & spiritual strain on children and their families throughout the course of infection 7. Palliative care is commonly thought of as end of life care. Indeed, the principles of palliative care are vital for patients in the end stages of life where care does not focus on prolonging life but on alleviating symptoms, improving the quality of life remaining and relieving the burden of illness on the patient and family. However, the burden of HIV is not only at the end of life but throughout the course of infection. Like adults, children face considerable physical, emotional, social and spiritual strain from diagnosis through to the end of life. Not Just End of Life Care Whilst children with HIV will inevitably need end of life care at some stage, Palliative care begins when illness is diagnosed and is appropriate throughout the child s illness AND at the end of life 8. The principles of palliative care can provide immense benefit to children with HIV throughout the course of HIV disease. Symptom control is required throughout the child s illness as they experience recurrent infections and painful, debilitating conditions. Suffering may be alleviated and quality of life may then be improved. Similarly, the psychological and social impact of HIV begins with diagnosis and continues through to the end of life and beyond, when bereavement support is required. A Continuum Palliative care is a continuum, which children and families can enter at any point. The continuum ranges from: Counselling before and after voluntary HIV testing Supporting people with HIV/AIDS who are not sick and their families Providing home care for people who are ill Bereavement follow-up and support for families after a person with AIDS has died (Lauden, 1999) 9. Palliative Care is therefore a continuum. It is not end of life care but a continuum of care in to which the child and their family may enter at any point. Activities involved in this continuum focus on counselling and support from the very beginning at diagnosis; providing support for those living with HIV but who are not sick; home care for those who are ill; and bereavement follow up for families after the death of a family member - an essential part of the continuum. Paediatric Palliative Care Manual for Home Bases Carers 21

25 Palliative Care is the active, total care of patients at a time when their disease is not responsive to curative treatment. Control of pain or other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of best possible quality of life for patients, their families or other key people important to them. Many aspects of palliative care are also applicable earlier in the course of the illness (World Health Organisation, 1998) 10. The World Health Organisation definition of Palliative Care is stated in the slide. The text highlighted in blue confirms the points already made and reemphasises the role of palliative care throughout the course of an illness in contrast to being solely end of life care. All of these principles apply to the needs of adults and children infected with HIV. Palliative Care for Children aims to: achieve the best quality of life for children and their families/care givers across the continuum of care, from diagnosis to end of life care and bereavement support keep the child well and symptom-free for as long as possible, in order that he may live as fully and as comfortably as possible ensure holistic, compassionate care, addressing physical, psychological, social & spiritual needs of each individual child 11. Palliative care for children follows the same principles, including the importance of the child s family. Having defined what is meant by palliative care and the role of palliative care for children with HIV, the following slides will now address individual components of care that children with HIV require. So What Can you Do? Children with HIV need you to help them and their carers by: Addressing their physical, emotional, social and spiritual needs Keeping them healthy for as long as possible Monitoring them regularly Recognising, referring and helping to treat infections Recognising and helping to manage symptoms Supporting their carers Liaising with the Professional Nurse and multidisciplinary team 12. This training programme has been written in line with the scope of practice of Home Based Carers, as defined by South Coast Hospice. This slide demonstrates that Home Based Carers have a broad range of roles in palliative care for children with HIV, all within their scope of practice. The Home Based Carer is commonly the most regular, or even only, contact that the child and family may have with health and support services. The Home Based Carer is in a unique position to be able to address the needs of children through monitoring and assessment of the child and family. They will be supported by others within the Home Based Care team to whom they will then refer concerns (e.g. supervisor or professional nurse). Different aspects of care as listed here will now be discussed in more detail. 22 Paediatric Palliative Care Manual for Home Base Carers

26 Promote Good Nutrition Plays a central role in keeping children with HIV well for as long as possible Essential for maintaining a strong immune system and helping children fight off infections Children with HIV have greater nutritional requirements than uninfected children 13. A major component of care is the focus on keeping the child well for as long as possible. A child with HIV is more likely to get infections which greatly affect quality of life. The first of various strategies for keeping the child healthy for as long as possible is to promote good nutrition. The importance of good nutrition for a child with HIV cannot be stressed enough. Nutrition will be discussed further in Module 6: Nutrition. Promote Good Nutrition Children with HIV need you to educate their care givers about: the importance of good nutrition in promoting health the nutritional values of local, available foods preparation of local foods that maximises nutritional value hygiene measures required in food preparation and to recognise and refer children with malnutrition 14. Malnourished children are more likely to get infections. Children with HIV are already susceptible to infections. Home Based Carers have a vital role to play in educating families about good nutrition and its role in keeping the child well for as long as possible. This is not only important for the child with HIV but for his/her family. The child s weight should be recorded on the Road to Health Chart Check the child has been weighed Monitor Growth Identify any cause s for concern as early as possible Refer any concerns 15. Ask trainees if they are familiar with this chart. Every child should have a Road To Health Chart. This documents the child s weight and head circumference at different ages and the dates of immunisations. Every time the child is weighed, this should be recorded on the chart. On the left of the chart is the weight. On the bottom of the chart is the age. The first point (far left) is the child s weight at birth. The two solid black lines are called percentiles and represent the average weights for children at different ages. The child s weight should follow the curve in the same pattern. The child will then be gaining weight as expected for his age. The chart will be discussed in more detail in Module 6: Nutrition. It is also important to measure and plot height and head circumference to assess growth properly. These charts are extremely useful tools for detecting whether children are growing well. They can be used to identify children with growth failure or malnutrition before it gets severe. However, they are only useful if the child is being weighed regularly. Home Based Carers can teach parents/carers about the importance of regular weight checks and check regularly that the chart is being completed. If they are not, growth failure or malnutrition may be missed. Paediatric Palliative Care Manual for Home Bases Carers 23

27 Vitamin A Supplements All children should be given vitamin A supplements to prevent severe illness First dose: Not breastfed - at 6 weeks Breastfed any time after 6 months of age Thereafter: should be given every 6 months to ALL children Severe Malnutrition or Persistent Diarrhoea: AN extra dose should be given for treatment UNLESS a dose has been given in past month 16. Vitamin A is essential for an effective immune response. Vitamin A deficiency makes children susceptible to infections and also to night blindness. Children with severe malnutrition are usually Vitamin A deficient. Diarrhoea prevents Vitamin A being absorbed. Children with HIV are commonly malnourished and get recurrent episodes of diarrhoea. They are at high risk of Vitamin A deficiency yet they have a critical need for Vitamin A due to their need for a good immune response. Home Based Carers can provide parents/carers with information about the importance of Vitamin A supplements and where they are available locally. Immunizations Children with HIV get more infections than other children Some can be prevented using normal immunizations ALL children with HIV must be immunised according to the national programme Home Based Carers are able to educate care givers about the importance of Immunizations! 17. Immunizations save the lives of millions of children very year. Many of the common childhood illnesses causing death in babies and young children are now preventable. ALL children should be immunised according to the national protocol. The reverse side of the Road To Health Chart lists the immunisations which the child should receive and these are signed once given. Children with HIV are even more susceptible to these childhood illnesses and they MUST receive the immunisations. Home Based Carers can check that the immunisations have been given by looking at the chart. If they have not, they may counsel the parent/carer about the importance of immunisations and refer the child to the local clinic. Prophylaxis Prophylaxis is the use of drugs to prevent certain infections Severe Opportunistic Infections like PCP Pneumonia, Toxoplasmosis Acute severe bacterial infections may be prevented using Co-Trimoxazole (Bactrim) prophylaxis 18. Ask trainees to explain what is meant by prophylaxis. There are some severe opportunistic infections which are known to affect children with HIV but which can be prevented using specific drugs. These have transformed the prognosis for children with HIV who now have significantly reduced risk of developing these debilitating, distressing and life-threatening conditions. Cotrimoxazole (Bactrim or Trimethoprim- Sulfmethoxazole) has been found to be very effective at preventing PCP Pneumonia, Toxoplasmosis and severe bacterial infections. 24 Paediatric Palliative Care Manual for Home Base Carers

28 Children with HIV need you to: Prophylaxis reinforce the importance of prophylaxis ensure they have enough medication for child assess whether they are giving the medication and giving it correctly refer any concerns monitor for allergy to Bactrim 19. Although it is not within the scope of practice of most Home Based Carer Givers to administer medication, they have an important role to play in ensuring that the child is actually receiving Bactrim. If the child is not, he is at great danger of developing these severe opportunistic infections. Any concerns should be referred. It should be noted that whilst allergy to Bactrim is not common, it is possible. Any child receiving Bactrim who develops a skin rash or ulcers should be referred immediately to the prescriber. It is important that Home Based Carers are aware of this possibility as they may be the first to observe it. This will be discussed further in Module 10: Skin Problems. Bactrim Regimen Children with HIV should take Bactrim daily, 5 days a week They should be continued until 15 months old when a decision is made: If HIV uninfected, Bactrim is stopped If HIV-infected but asymptomatic, Bactrim is stopped If symptomatic HIV, Bactrim is continued for life If CD4% > 20% for 6 months, bactrim can be stopped 20. The Bactrim regimen will be written clearly on the set of instructions for the child. It is usually prescribed daily, 5 days a week (i.e. Monday to Friday). Latest research has shown that Bactrim should be continued until 15 months of age when the prescriber will then make a decision as to whether it should be continued or not. If the child is HIV negative, there is no need for the child to take it any longer. If the child is HIVpositive, Bactrim will only be continued if the child is symptomatic. If the child is on ARV therapy then the bactrim can be stopped once CD4% above 20% for 6 months. Regular Monitoring Children with HIV need you to monitor them regularly in order to: Assess and promote good nutrition Identify delays in growth and development Educate carers about the importance of clinic checks Provide support to the child and carer Identify and address emotional needs Identify and address social needs Identify infections as early as possible Refer any concerns to the Professional Nurse 21. As stated earlier, Home Based Care Givers may be the main or only contact that the child and family have with health and support services. The child needs regular monitoring in order to ensure that any problems are identified as early as possible and managed appropriately. This is important for ensuring that the child remains well and symptom-free for as long as possible and that any symptoms are controlled effectively. Home Based Care Givers are central to the identification of issues and referral for management. Paediatric Palliative Care Manual for Home Bases Carers 25

29 Recognising & Treating Infections Infections in children with HIV are usually more severe more difficult to treat than uninfected children Children get very sick much more quickly than adults Early recognition & treatment of any infection is essential! 22. As discussed in Module 1: HIV in Children, children with HIV experience more severe, more persistent forms of infection than uninfected children. These are often extremely difficult to treat and symptoms may be particularly painful and distressing. In addition, children get sick much more quickly than adults and complications can be life-threatening (e.g. a child with diarrhoea may die from dehydration within a few hours or days). Early recognition and referral is essential if the child is to be treated effectively and symptoms are to be managed. The Home Based Care Giver may be the first or only point of contact where such infections may be identified. Recognising & Treating Infections Children with HIV need you to: Listen when the carer is worried Educate care givers about signs and symptoms Encourage care givers to call for help Assess an emergency and take appropriate action Identify infections as early as possible Refer promptly where appropriate Assist with management of common signs & symptoms ensure regular follow up 23. The role of the Home Based Care Giver in recognising and treating infections is listed here. Above all, it should be stressed just how important it is to listen to the carer. They know the child better than anyone and provide invaluable information regarding the child s condition. Home Based Care Givers have an important role in education, support, assessment, referral, management and follow up of the child with infection. Signs and symptoms of common infections will be discussed in other modules within this training programme. Symptom Management Children with HIV experience a wide range of distressing, debilitating symptoms throughout the course of their illness, impacting greatly on quality of life Children with HIV need you to: Anticipate painful, distressing symptoms Recognise symptoms as early as possible Refer problems promptly for appropriate management Ensure symptoms are being managed appropriately Support and assist their care giver Follow up to ensure management has been effective 24. Similarly, the Home Based Care Giver has an extremely important role to play in ensuring that the child s symptoms are controlled effectively. Through an awareness of the variety of symptoms the child may experience, being able to recognise these and refer as soon as possible for appropriate management, they may have a direct effect on improving the child s quality of life. Importantly, Home Based Care Givers are in a position to follow up the child and ensure symptom control has been effective then refer again if necessary. Symptom control will be discussed later in this training programme. 26 Paediatric Palliative Care Manual for Home Base Carers

30 Working With Carers The child s carer knows the child better than anyone Ask them if they have any concerns about the child! Hear their concerns! Carers needs lots and lots of support and encouragement Teach the carers: How to help keep the child healthy for as long as possible To recognise and refer problems To give the medicines the child needs 25. The child s parent/carer must be central to any care for the child. They know the child better than anyone and can provide invaluable information about the child s condition. If they have concerns, these must be heard and respected. Parents/carers of a child with HIV are not only faced with the burden of HIV on the children but have significant, complex needs themselves. Work with the carer to support and help them. Not just physical support! Children with HIV need much more than just physical care They also have immense emotional, social and spiritual needs And so do their families! Addressing these is essential if quality of life is to be improved for the child and Family Liaise with social and community services 26. The psychosocial needs of children with HIV have already been introduced earlier in this module. Home Based Care Givers do not only have a vital role in meeting the physical needs of children with HIV but also the emotional, social and spiritual needs of the child. Importantly, it is not only the child who needs this but their families too. The families face overwhelming challenges in their lives. Home Based Care Givers can help to alleviate the burden of some of these challenges. These issues will be discussed later in the training programme. The Arrival of ARVs! Children with HIV can now expect: Reduced number of Infections Improved quality of life and Longer life BUT they still have considerable needs as: ARVs will not cure children with HIV Children on ARVs need immense support and monitoring 27. ARV drugs will have profound implications for palliative care in South Africa as they have transformed AIDS from a progressively fatal disease to a chronic illness in many countries. However, whilst alleviating HIV-associated symptoms, ARV drugs have significant challenges of their own, impacting on quality of life. They are not a cure. These drugs will therefore by no means make palliative care obsolete for these patients. In many ways, the principles of palliative care become even more important. The Arrival of ARVs! Children taking ARVs need you even more than before: To help them take the ARVs so they can get full benefit from the drugs for as long as possible To help them understand why they need to take the medicines To monitor the effect of the drugs To identify side effects To refer any problems 28. Palliative care will be as vital as ever if quality of life for children on these drugs is to be promoted for as long as possible. Home Based Care Givers have extensive experience within the communities they serve, having established, trusting and supportive relationships with children and families. They have an essential role to play in the future care and support of children taking ARVs. This will be discussed in greater detail in Module 16: ARVs. Paediatric Palliative Care Manual for Home Bases Carers 27

31 End Of Life Care A team of professionals may decide that continuing with further treatment will cause undue distress to a child The decision to provide the child and carer with End of Life or Terminal Care is thought about extremely carefully Every child will be different, depending on their condition 28. Palliative care is a continuum from diagnosis to end of life and beyond to bereavement support. Yet when does end of life care begin? This is an ethical dilemma and is full of moral and emotional challenges. Every child with HIV will eventually require terminal or end of life care where care is focussed on symptom control prior to death. The circumstances of every child and their family will be different and any decisions regarding where and how the child will be cared for will be made by a team of designated professionals, led by the wishes of the family and with the best interests of the child in mind at all times. End of Life Care The expertise and support of Home Based Carers make it possible for Children to die as comfortably as possibly in their own home and Care givers to be supported during the final stages of the child s life This should be encouraged, as long as the parents or carers are able to cope 30. In the same way that Home Based Care Givers have transformed end of life care for adults with HIV and other terminal illnesses, the importance of the role of Home Based Care Givers in end of life care for children cannot be emphasised enough. The expertise and support of Home Based Care teams means that children may die comfortably in their own home, with their family around them. This should be encouraged wherever families are able to cope and full support and symptom control is available through a Home Based Care Team. Bereavement Support Your role does not end when a child dies Any death is traumatic but none more so than the death of a child within a family We must be sympathetic, understanding of their loss and support them through their grieving process 31. The final stage of the continuum of care is bereavement support for the child s family. Bereavement support in the event of a child s death is particularly challenging as families struggle to come to terms with the death of one so young. Grief may be associated with intense feelings of guilt and anger. Parents/carers will all be different whilst some may benefit from fairly minimal support, others may require much more intensive, prolonged support as they come to terms with the death of the child. In contrast to the death of a child with other terminal illnesses such as cancer, the death of a child with HIV rarely stops there - others within the family may have already died or face death themselves. Home Based Care Givers may well have established a strong, trusting relationship with the family and can offer great support. The need for support for Home Based Care Givers themselves must never be underestimated either and provision for this must be made within the Home Based Care Team. 28 Paediatric Palliative Care Manual for Home Base Carers

32 Your Role in the Future There are many, many children infected with HIV who need your care and support now Across the continuum of care But this is just the beginning! Over the following years, there will be more and more children needing your expertise 32. This module has provided an introduction in to the broad role that Home Based Care Givers have to play in palliative care for children with HIV. It is a challenging role, involving a variety of different needs across the continuum of care they require. This module and the modules that follow aim to equip Home Based Care Givers with the knowledge, skills and confidence to meet some of these needs as the number of children with HIV continues to increase. The HIV pandemic in children is like the hippo in the water. As we see it now, it is extremely worrying. Yet, in the same way that there is even worse to come from under the water, the HIV pandemic in children continues to increase. The expertise and experience of Home Based Givers in the care of children with HIV will be needed more and more over the following years. Paediatric Palliative Care Manual for Home Bases Carers 29

33 Module 3: Impact of HIV on Children Module Objectives To introduce the physical, psychological and social impact of HIV on children To equip trainees with an understanding of the broad range of events impacting on the life of a child with HIV To demonstrate the range of emotions which may arise from these events Slide Presentation: Impact of HIV on Children Impact of HIV on Children Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria, Small Grant Scheme 1. Welcome trainees and introduce your self. Give a brief background in to your area of practice, role and experience of caring for children with HIV. Ask the trainees for their experiences of the impact of HIV on children, challenges they have faced, how they have managed these and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. What concerns do you have for Sipho and Sizwe? Sipho & Sizwe Sipho and Sizwe have HIV Their mother, father and brother are dead They now live with their grandmother & grandfather 2. This case study introduces the impact of HIV on Sipho and Sizwe, two brothers. They are like millions of other children around the world, also infected with HIV and having lost one or more family members. Ask trainees for their thoughts on how HIV has already impacted and will continue to impact on Sipho and Sizwe? 30 Paediatric Palliative Care Manual for Home Base Carers

34 Vulnerability All children are potentially vulnerable BUT HIV makes children extremely vulnerable Children with HIV have enormous stresses in their life This can seriously effect their quality of life 3. Any child is vulnerable as they have not yet acquired the physical, psychological and social abilities required to cope independently with life. Yet a child with HIV is even more vulnerable due to the wide range of stressors impacting on them. These can dramatically affect the child s quality of life. Vulnerability If we are to promote their quality of life we must be able to: Recognise the stressful events in their lives Understand the way children perceive these events Understand their impact on each individual child Understand the way individual children cope Support and help children to cope 4. As the focus of palliative care for children with HIV is on improving their quality of life, trainees need to have an understanding of the range of physical, psychological and social stressors which make children with HIV vulnerable. If trainees are able to recognise and understand these, they may help to alleviate their impact, thus improving quality of life for that child. HIV Infection They are infected with a terminal disease, and experience numerous painful, debilitating illnesses 5. The primary stressor impacting on their life is HIV infection itself. Having been infected either from birth or since birth, they are living with a condition for which there is no cure. Whilst the child may remain well for a period of time, he/she will inevitably have to cope with opportunistic infections and symptoms which are painful & debilitating. The pictures are just a few examples of such conditions (left to right: herpes simplex, oral candidiasis, parotitis and shingles). HIV Infection Children with HIV may not understand why they are sick? Why am I sick more often than my friends? Why do I have to take lots of medicines? Why do I have to have lots of painful blood tests? What have I done wrong? Why do people bully me? 6. As a result of HIV infection, the child will experience numerous events which would be distressing to an adult but are even more so to a child. Unlike adults, a child will not usually understand why these are happening. The illnesses themselves, the need to take lots of medicines or having to cope with medical procedures may be extremely traumatic. Children start to think they have done something wrong. They may also be stigmatised against when their HIV status is known or assumed by others. Paediatric Palliative Care Manual for Home Bases Carers 31

35 Caring for a Sick Parent Usually when a child is sick, their parent provides the care and love the child needs Children with HIV are not so lucky Usually, it is the child who is caring for the parent 7. A child with HIV does not only have his own condition to cope with. The majority of children infected with HIV have an HIVpositive parent and this parent may be extremely sick. Contrary to normal tradition where a sick child will be cared for by their parent(s), a child with HIV may not be so fortunate. Instead, he may be caring for his sick parent(s). Ask trainees if children in their care are in this position and the impact it may be having on the child. Caring for a Sick parent A sick parent often has less time and energy for the child due to: Sicknesses Thoughts of their own death Worries for the future of their children Guilt about their child s diagnosis 8. All children need a lot of love and attention. This is particularly so when they are sick. However, a parent with HIV may be forced to invest the time and energy they have in to coping with their own illness and prognosis and planning what will happen to their child(ren) in the event of their own death. The parent may have feelings of guilt as a result of having passed the virus to their child. All this places immense psychological strain on a child. Caring for a Sick Parent A child who cares for a sick parent may be: Forced to carry out adult household work when sick himself Unable to attend school Malnourished due to loss of household income (and increased risk of infection) Forced to beg for food and other basic needs Orphaned On top of all that, the child may then lose one or both parents And his brothers and sisters 9. There are also physical and practical implications. The child may be relied upon for carrying out household chores. This may beyond his ability, particularly when sick. This reliance on the child may also mean he cannot attend school. Apart from the need for education, a child with HIV needs to lead as normal a life as possible. A loss of household income commonly results in less food a child with HIV is already at risk of malnutrition, which in turn makes him more susceptible to infections. 10. On top of the physical, psychological and social impact of HIV infection itself and the common need to care for a sick parent, the child may then lose one or both parents. And it may not stop there if brothers and sisters have also been infected, they too may die. UNAIDS estimated that about 660,000 children in South Africa had become orphans due to AIDS (UNAIDS, 2002a). The HSRC estimates that 13% of 2-4 year old South African children have lost at least one parent. Ask trainees what is happening to orphaned children in their communities? 32 Paediatric Palliative Care Manual for Home Base Carers

36 When a parent dies, the children may be cared for by elderly grandparents or divided among family members If there is no extended family, the child may be forced on to the streets On the streets, a child with HIV will become sick very quickly Orphaned 11. The extended family system often ensures that orphans may continue to be cared for by family members who know and love him. Yet elderly grannies may not have the energy or good health to care for the child and thus become exhausted. Extended families are being overwhelmed by the number of children orphaned by HIV and siblings may be forced to separate, living in different communities from one another. Others may be forced on to the streets. Child-Headed Households A child with HIV may be: caring for siblings or being cared for by a sibling This a burden of responsibility too heavy for a child Particularly if the child has HIV It is also against their rights! 12. There may be no extended family to care for children orphaned by HIV. Children are therefore being forced in to childheaded households, caring for one another, with no adult to care for them. The burden of bringing in enough food and water, carrying out household chores and ensuring good hygiene is an immense burden for a child. This is even more so where the child is sick. Plenty of good food and good hygiene is extremely important for a child with HIV. Too much, Too Young! Children with HIV commonly experience traumatic events, loss or loss of control. These make them feel helpless and overwhelmed Own illness Death of parent(s) Medical tests Medication Sent to stay elsewhere Decisions made by others The Impact Helplessness 13. Like adults, HIV has an enormous impact on children. Adults and children face many of the same physical, psychological and social stressors yet these are exacerbated greatly in children. A child is unable to make sense of the many traumatic events happening around them. A child is dependent on others for love, care and support. The impact of HIV may result in a number of different emotions in children which will now be discussed. Trainees will be asked to draw on their own experiences in order to enhance learning. 14. Ask trainees to consider a time in their lives during which they felt they had no control over what was happening to them. How did it make them feel? A child with HIV may frequently experience feelings of helplessness due to events in their lives (such as those listed in the slide). This picture of a child lost in the desert aims to depict a feeling of complete helplessness. Paediatric Palliative Care Manual for Home Bases Carers 33

37 Fear and Anxiety Will my mother die? Who will look after me then? What is happening to me? Will I keep getting sick? Will I keep having to have painful tests? I hate that medicine! Will I die too? What happens when I die? 15. Ask trainees to consider a time in their lives when they have felt afraid or anxious. How did it make them feel? Numerous events occur in the life of a child with HIV which may make them feel afraid or anxious. These usually result from not understanding what is happening to them. The picture aims to depict one of the many ways that fear and anxiety may be expressed. A child with HIV needs so much love! One or both parents may be dead Other family or friends may not have time or want to have contact with the child Loneliness 16. Ask trainees to consider a time in their lives when they have felt lonely. How did it make them feel? All children need to feel safe and loved by others. In particular, a child with HIV may experience a great deal of traumatic events, as discussed in earlier slides. He/she has a profound need for love and security in order to not feel alone. This picture aims to depict the child feeling alone. The child may be grieving the loss of one or both parents and his siblings too He may be have been sent away to be cared for by others. The child may realise he too will die Sadness 17. Ask trainees to consider a time in their lives when they have felt sad. How did it make them feel? As children with HIV commonly have sick or deceased relatives, this can lead to great sadness in their lives. This may be compounded by having been sent away to live elsewhere. It is known that even young children can have a basic understanding of death. They may realise that they too, like their relatives who were also sick, may die. Confusion Adults often think children do not need to know what is going on! But, children DO need to be helped to understand in their own way Why did Mummy leave me? Why do they do all these nasty things to me? Why do I have to drink that disgusting drink every day? Why is Daddy so sick? Who looks after me now? Who will love me now? 18. Ask trainees to consider a time in their lives when they have felt confused. How did it make them feel? Confusion often arises from an inability to make sense of things. How is a child to understand why his parents are no longer able to care for him or to love him? Children are even more likely to become confused when different adults give different explanations for things that have happened, as a result of being unsure what to say to the child. 34 Paediatric Palliative Care Manual for Home Base Carers

38 A child may feel that someone else is to blame for the death of their parent(s), brother or sister They may feel angry with God for taking their loved one Anger 19. Ask trainees to consider a time in their lives when they have felt anger. How did it make them feel? A common stage of grief is anger and a need to blame someone for the death of a loved one. Like adults, children may also experience this, particularly as they may not have been given any explanations for the death of their parent or sibling. In addition, children may not know how to express this anger. Abandonment Children may feel abandoned when a parent is unable to care for them any more or has died Why does Mummy not want to take care of us any more? Why have we been sent here to live? Who will look after us now? 20. Ask trainees to consider a time in their lives when they have felt abandoned. How did it make them feel? All children need a great deal of love and a sense of security. Sick parents may have no choice but to rely on another to care for their child. One of the major concerns for children who have lost a parent is Who will look after me now? For a child, who needs nothing more than to feel loved and secure, these events may lead to a feeling of abandonment. Mistrust Adults are commonly reluctant to tell children the truth about: The child s own sickness The parent s sickness But, children often know when something is wrong! If they are not told the truth: they imagine something else they lose trust in adults Changes in Behaviour Sadness, anxiety and fear are often expressed in behaviour change Bed wetting Aggression Self-harm Clinging Regression 21. Finally, ask trainees to consider a time in their lives when they have felt mistrust for someone or something. How did it make them feel? Understandably, adults have a strong desire to protect children and therefore withhold information that may hurt them. Yet children can be extremely perceptive and quickly sense when something is being held back. Children need to be able to trust adults in their lives. Mistrust can be very damaging. If children are not told the truth, they may imagine or fantasise something that is far worse. 22. All these different emotions may be expressed in different ways, which may be misunderstood. When caring for children with HIV, we need to be aware of the way some of these may be expressed. Then we can try to understand why a child may be behaving as he is, how he may be feeling and how we may help him. For example, an aggressive child may be extremely afraid and that his way of expressing this fear. Paediatric Palliative Care Manual for Home Bases Carers 35

39 Worrying Signs Some general signs indicate that a child is in need: Seems sad and without spirit Does not play with other children Does not appear interested in what is going on Seems weak and without energy Does not stand up straight or walk tall Appears unwashed and malnourished 23. Certain signs should alert us to the fact that a child may be experiencing difficulties coping with all that is happening to him. For example, a withdrawn child may be experiencing a lot of emotions. He may be feeling sad and lonely or afraid of what is happening in his life. An awareness of these may help trainees to identify a child who is in need of help. Sipho & Sizwe What stressful events may Sipho and Sizwe have had to cope with? What stressful events may Sipho and Sizwe have to cope with in the future? How may Sipho and Sizwe be feeling? 24. Returning to Sipho and Sizwe, the case study from the beginning, ask trainees to draw on what they have learnt from the presentation to answer the questions. Encourage them to share their thoughts on how they may apply what they have learnt to children in their care. 36 Paediatric Palliative Care Manual for Home Base Carers

40 Module 4: Helping Children to Cope With HIV Module Objectives: To review a variety of factors which influence the way that children cope with stressful events in their lives To review the way that different children communicate To describe the different levels of child development and the way this influences understanding of illness and death To introduce the concept of resilience and methods for encouraging resiliency To stress the importance of an individualised approach to understanding and helping individual children cope with the events in their lives Slide Presentation: Helping Children to Cope With HIV Helping Children to Cope Paediatric HIV Home Based Palliative Care Training Programme Funded by British Small Grant Scheme 1. Welcome trainees and introduce your self. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of helping children to cope with the impact of HIV, how they have managed it and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. The Impact of HIV HIV Infection Caring for a Sick Relative Orphaned 2. As discussed in Module 3: The Impact of HIV on Children, a child with HIV faces enormous stressors in his young life. These include the primary stressor, HIV infection itself. The child faces a terminal diagnosis, along with recurrent illnesses throughout the course of the disease. In addition, they may be caring for sick relatives, the physical and emotional burden of which is overwhelming for a child. They may then be orphaned, losing one or both parents and even their siblings. Where are they then to live and who is to care for them? Paediatric Palliative Care Manual for Home Bases Carers 37

41 Sadness Fear & Anxiety Loneliness Abandonment Anger Mistrust Confusion The Impact of HIV 3. Drawing on what they learnt in Module 3: The Impact of HIV on Children, ask trainees to summarise some of the emotions that children with HIV may experience as a result of these events. This module will address the issue of helping children to cope with the events impacting on their lives and in turn, to try to prevent or alleviate some of these emotions. In turn, the child s quality of life may be improved. All Children are Different A child s ability to cope with these events depends on: Stage of development Prior experiences Ability to Understand Events Sense of control Resilience Love and Sense of Security 4. Not all children react to events in the same way. It is of paramount importance to understand that all children are different. The way children cope with events in their lives depends on a number of factors as listed in the slide. The role of each will be discussed throughout this presentation as these help us to understand how individual children will cope and how we may be able to help them appropriately and effectively. Stage of Development When a child is born, he starts a long journey of great change 5. The child s stage of development is one of the most important factors affecting the way a child will cope. Age itself is not a reliable indicator of the way a child thinks and behaves. It is more accurate to think of their developmental age. This will be explained now using the analogy of a train journey. All children are on a journey of great change, from the day they were born right through to adulthood. Child Development A lot of new things happen to a child as he travels on this journey! He will start to watch, listen and learn He will learn to sit, stand, walk and run He will decide what he likes and what he dislikes He will start to talk and to ask questions At different points in this journey, a child will Think differently about the world around him Have different understanding about events affecting him 6. All children are heading in the same direction on this journey to adulthood. On the journey, a lot of new things happen to the child. As they develop, they start to learn new things and behave in new ways. Examples are listed on the slide. Decades of experience has shown that a child starts to learn new things in a typical order and at typical ages (e.g. can sit without support by 6-7 months, then stand supported at 8-9 months). These are called milestones. However, not every child will reach these milestones at exactly the same time - others may be later than others. Importantly, on this journey, it is not only the child s physical abilities that develop but the way they think, understand and behave. 38 Paediatric Palliative Care Manual for Home Base Carers

42 Children & HIV Understanding the way children develop helps us to understand: the ways different children think the ways different children communicate what illness means to a child what children understand about death This helps us to understand how different children with HIV: respond to illness and death how they cope how we can help them 7. If we are able to understand the way children think, understand and behave at different stages of development, then we may be in a better position to understand how children with HIV respond to the events in their lives. How do children think about things? How do they tell us what they feel? What does illness or sickness mean to them and what do they understand about death? All Children are Different Although all children are developing along the same journey Some children may travel quickly Some may travel more slowly Some may reach the destination with no problems Some children may get held up on the way Some may experience stressful events on this journey Children with HIV often have delayed development 8. As has already been stressed, all children are different. Children develop along this journey at different speeds. One 2 year old may be slightly ahead on this journey than another 2 year old. For example, his speech may be better and he is therefore more able to express himself. One 3 year old may fear monsters whilst another has learnt that they are only imaginary. Some children may progress through their development meeting all the expected milestones at the expected times. Others may be held up or delayed, and this is often due to stressful events which prevent the child from continuing on their journey. Children with HIV tend to have developmental delay, either as a result of HIV infection itself, recurrent illnesses or the psychological trauma of events impacting on them. Dependent on parents Expre sse s himself through non-verbal communication Re sponds to adult nonverbal behaviour Birth to 2 Years 9. The following slides will describe the way children usually think, understand and communicate at different stages of development. Slides 9 to 20 have been based on the work of Mallman (2002) and REPSSI (2003). Note that none of the slides state exact ages but periods of time. From birth to 2 Years, a child is totally dependent on parents/carers for food, warmth, hygiene, love and security. He cannot talk but uses non-verbal communication such as cries, smiles and vocalizations. He responds to adult non-verbal behaviour such as touch, smiles and the sound of the carer s voice. Paediatric Palliative Care Manual for Home Bases Carers 39

43 Birth to 2 Years Cannot understand what has happened when someone has died Will miss the love, touch, voice, smell and security of parent who has died May show behaviour change (cries, irritable, not sleeping) or regression 10. In relation to death, children at this stage can not understand death itself. Death means the loss of the love, touch, voice and smell with which they are so familiar. This can cause great distress to the child and may be expressed through behaviour change. The child may be crying, irritable and difficult to console. He may not sleep. He may even regress, where milestones that have already been achieved may be lost (e.g. a child may have started to crawl or walk yet he can no longer do this). 2 to 4 Years Mainly concerned with themselves and their own needs Learning about objects and people Still cannot understand concepts like life, death or friendship Still not able to fully express feelings Need short, simple sentences 11. A toddler is almost totally egocentric, i.e. he is concerned with himself and all matters that affect him. He is learning more about the things around him and in particular, how they impact on him. He is unable to understand the concept of life and death and although speech and language is developing, he cannot fully express himself. This is often frustrating for the child. The child needs simple explanations and descriptions if he is to understand what is being said and to be able to respond. 2 to 4 Years Can begin to understand something about death Dead bird no movement, breathing, no eating It is not sleep as it cannot wake up Think the dead person will come back 12. Although a child of this age cannot fully understand the concept of life and death, even young children can have basic ideas using tangible events in their lives. For example, a 4 year old child drew the picture in the slide. She had been watching flowers growing in the garden and knew that there needs to be a seed in the ground before it can grow. With lots of water, the seed will grow in to a beautiful flower. This will go brown after a while though as the flower dies. The seeds from the flower fall in to the ground and another will grow. This is a basic idea of the cycle of life and death but is an example of the way children s experiences and current understanding can be used to help her. For other children, death may mean a dead bird on the road or a dead goat. Neither will wake up but they are not sleeping. A toddler will not understand that a dead person will not come back. 40 Paediatric Palliative Care Manual for Home Base Carers

44 2-4 Years Aware of changes in the way they are cared for May feel abandoned Cry, throw tantrums, cling to others, refuse to be touched Need to know the truth about family and friends who have died Behaviour changes (clingy, bed-wetting, insomnia, anger) 13. Death to a toddler means a change in the way they are cared for. They may feel abandoned and as if they were not wanted anymore by their parent or carer. This may be expressed in behaviour change, much of which may be misunderstood or be particularly challenging for those caring for the child. In the event of a death, even young children need honest information in ways that they can cope with in order for them to try to understand and cope. 4 7 Years Start to explore the world outside their immediate environment Develop a feeling for who they are Understand about belonging to a family and having friends Can now talk about their thoughts and feelings Non-verbal communication must still be encouraged Need simple, honest explanations and reasons Must be allowed to ask questions Imaginations develop Threat to body or possessions causes great anxiety 14. From 4 to 7 years, children are thinking less about themselves and more about the world around them. They are developing a sense of identity and as their language and speech advances, they are better equipped to express themselves. However, it must never be assumed that because they can talk clearly that they do not have difficulties in expressing their emotions. Creative, nonverbal methods should be still be used. Children at this stage have many questions as they try to make sense of the world around them and they need honest, open replies if they are to gain that understanding and try to cope. If this is not done, their imagination may lead them to the wrong explanation which may be far worse than reality (e.g. they have been naughty and that is why my mother went away). Any threat to their body (e.g. tests, investigations) or possessions may cause great distress and they need explanations in order to reduce anxiety. 4-7 Years May still find it difficult to understand death that is forever depending on prior experiences May repeatedly ask How and Why a person died Longing, sadness, grief & anger are normal Fears about death (may not want to be alone, have lights off) Anxiety or fear for care giver or self dying too Able to believe in God Death should be openly discussed, in ways understood Regression and helplessness are common 15. Children at this stage still find it difficult to understand that death is permanent and the person will not come back. They need more information and explanations about How and Why someone died. This may be particularly challenging for relatives as they may not be ready or know how to answer the child s questions. Children commonly experience intense emotions associated with grief and may also begin to fear death themselves. They are able to believe in God which may help them, particularly where spiritual beliefs and support are important within the family as a whole. It is extremely important that death is discussed honestly and openly in ways that the child can understand in order to help him cope. Paediatric Palliative Care Manual for Home Bases Carers 41

45 7-9 Years Much more ability to understand things clearly Looking for meaning in the events of their lives Eager to learn Learning new skills boosts their self-esteem 16. At this stage, children have increased ability to understand things clearly, and need to put meaning to the events affecting them. They want to learn more about why things are as they are. This increases their self esteem and confidence. Disappointed if unable to manage new challenges Need lots and lots of acknowledgement, constructive criticism and praise 7-9 Years Need to know more facts about death ( death makes body shut down, do not breathe, talk or eat) Need to know all the causes of death Now understand that death is forever the person will never come back to them Sadness and a sense of helplessness are most common May still feel responsible for death Fear another close adult to themselves may die 17. A child with HIV needs more detailed explanations about Why am I sick?, Why did she die? They want to understand more about death and the causes of death. Again, this can cause anxiety for others. Common emotions are sadness and helplessness as a result of feeling they have no control over the events in their lives. They blame themselves for the death of others (e.g. Did I do something wrong? ) and fear that others they are close too may also die Years Now understand that death is fully irreversible Can understand what causes death and results of death Abstract thoughts like heaven are clear Generally knows difference between fantasy and reality This leaves child helpless and out of control Mourn in similar ways to adults May deny death or look for a reason for it (blame, anger) Need meaning to be given to the death to 12 year olds understand not only that death is irreversible but many of the causes too. They can use abstract thought (i.e. they do not just have to be able to see things) to understand heaven which may help them. Most children can distinguish between fantasy and reality (e.g. the reality that the parent will not return to them). If children are not supported well this can be overwhelming and leave them feeling helpless. They experience grief in similar ways to adults (e.g. denial, sadness, anger) and need a great deal of support to help them understand why the person died if they are to cope with it Years Developing personality and sense of purpose in life Transition from childhood to adulthood Wants to belong and be accepted by peer group Fear isolation Preparing themselves to get involved in life 19. Teenagers are complex. They are no longer children but have not yet acquired the skills to cope with adulthood. They are going through a period in which their personality is developing. Above all, they want to conform to their peer group and the last thing they want is to be different for any reason. They may fear being alone. This stage involves preparing themselves and making decisions about their life ahead. 42 Paediatric Palliative Care Manual for Home Base Carers

46 13-18 Years Recognise death as final and irreversible Idea that life may be limited or ended by disease is very threatening Great fear and insecurity when faced with pain and death May pity themselves May talk about death and loss openly and appropriately May appear confused, suppress feelings, show disbelief and denial 20. With that in mind, the concept of death can be particularly threatening to them. Adolescents are preparing for life ahead of them and death causes great anxiety and fear. They have a good understanding of death, recognising it as final and that the person will not return. Adolescents will differ greatly. Those who feel confident and able to trust others with their feelings may discuss them openly whilst others may feel that no one will understand them and attempt to deal with these emotions alone. Adolescents need enormous support. They will not only be dealing with the diagnosis and death of their parent(s) but their own mortality too, at a time when they should be looking ahead to developing their own life and relationships. Sense of Control A child with HIV experiences lots of events in which he has no sense of control Loss of parents Sicknesses Painful tests Sent away to live with others All these lead to emotions such as helplessness, confusion, anger A child will cope better if he feels in control Where possible, involve the child so that he feels in control 21. Developmental stage is not the only factor which influences a child s ability to cope with events. The child s sense of control is extremely important. If children feel they do not have control over something affecting them, this may lead to feelings of helplessness. As discussed in Module 3: Impact of HIV on Children and listed in this slide, there are many events which may give rise to such a loss of control for children with HIV. Every effort must be made to involve children, listen to their views, give them choices and make them feel important. This can help children to cope better. For example, a 6 year old boy on Bactrim prophylaxis cannot be given a choice about whether he takes medicine or not. However, he can be in charge of his own calendar in which he marks when he has taken them. This will increase his sense of control over the need for him to take medication. This is only one example in which creative strategies may be developed to help increase children s sense of control. Such strategies may appear to have minimal impact to us but have significant impact for children where all decisions are usually made for them. Paediatric Palliative Care Manual for Home Bases Carers 43

47 Resilience The ability to bounce back after stressful and potentially traumatising events (Tolfree, 1996) Resilient children are better able to cope with life s adversities All children have the potential to be resilient but it must be developed Resilience should be encouraged and developed in all children affected by HIV 22. Resilience is the term used to describe the child s ability to bounce back. Refer to Mallman (2002) for more information on this. The concept of resiliency is underpinned by the understanding that all children are different, stating that some children are more resilient than others. Resilient children are better equipped to cope with stressful events and resiliency must be encouraged in all children to help them cope with the stressful events in their lives. Developing Resilience Provide them with Love & Security Most effective way of helping children to cope with all that is going on around them! Children with HIV may experience lots and lots of different emotions All the drugs and technology in the world could never replace showing a child that they will always be looked after, With lots and lots of love! 23. So how is resiliency encouraged and developed? Above all, children need to feel loved and secure. All children need this but children with HIV have a profound need due to the impact of their condition. Most of the emotions children may feel such as sadness, loneliness, abandonment, anger, fear and anxiety may be alleviated with a lot of love and ensuring that the child feels safe and secure. Developing Resilience Spend time with the children Listening to them instead of talking about them Show an interest in them and what they do, think and feel Play helps them to develop Answer their questions knowledge is empowering Encourage them to discover new things and new interests 24. Developing resiliency involves spending time with the children. Adults need to be committed and prepared to invest time and energy in to understanding the individual child and making him/her feel important. If a trusting, open relationship can be established, the child will feel he can ask the questions on his/her mind. These must be answered honestly and the child will be able to cope better due to a better understanding and sense of worth. Developing Resilience Teach them to Express Themselves Children need opportunities to express how they are feeling, throughout the course of their illness Emotions may vary from one visit to the next May be unable to express their emotions through talk alone Many other ways may be used in which children can express themselves very effectively 25. Adults tend to express themselves through direct talk with others. However, children require other means of expressing themselves. As described earlier, time and creative thought can result in the development of some powerful tools to help children express themselves. They can be adapted for each individual child and their individual needs. 44 Paediatric Palliative Care Manual for Home Base Carers

48 Expressing Themselves Stories Art Play Music Memory Work 26. Whilst adults can usually articulate how they feel about events impacting on them, children have not yet acquired the skills to do this. Instead they need opportunities to express themselves in ways that are appropriate to them. Creative activities often enable children to express themselves in greater depth than through speech. A 5 year old, HIV positive girl was asked to draw herself. The picture demonstrates that she perceives herself as lying sick in bed whilst a nurse visits her with medicines. This clearly demonstrates that being sick and taking medicine is having an impact on her. These issues may now be explored further. There is always someone there for the child to talk to and who will listen They can tell God all their worries and fears They will feel less lonely Prayer 27. Even young children are able to pray and to be taught that God will always listen to them and be there for them. When children feel alone, they may gain great comfort from this. They can express themselves in their own way and feel understood. They will know God will always love them and take care of them and their loved ones Remember! We often think we know what is best for a child In many ways, children do need us to help them But children know best how they are feeling and what they can and cannot tolerate only they can tell you what is bothering them 28. As children have yet to learn about much of life, they do need adults to make decisions on their behalf. However, only a child can tell us how he is feeling. If we are to help children to cope with events impacting on them, we need to understand how they perceive these events and what it means to them. Every child is different Respect their point of view Then we can : Gain a true understanding of how the child is feeling Provide them with a sense of control in events affecting them Work out how best to help them cope with the events they face Summary 29. No child is the same. Different children respond differently to different things. Children with HIV have to face a variety of issues at a very young age that many adults hope not to face. It is essential that we respect their point of view if we are to have any hope of gaining an understanding of how they are feeling, and then to help them cope in ways that are appropriate for them. Whilst we cannot change the child s diagnosis or bring back deceased loved ones, we can try to alleviate the impact of associated events through enhancing their ability to cope with them. Paediatric Palliative Care Manual for Home Bases Carers 45

49 Module 5: Talking with Children about HIV Module Objectives To demonstrate that children with HIV require information about their condition in order to help them cope better with events affecting them To introduce the concept of Sharing Information with Children about HIV To equip trainees with an understanding of the processes involved in talking with children about HIV To demonstrate the importance of an individualised, family-centred approach for every child and family Slide Presentation: Talking with Children about HIV Talking With Children about HIV Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children with HIV. Ask the trainees for their experiences of talking with children about HIV, challenges they have faced, how they have managed it and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Disclosure At what age should we tell them they have HIV? 2. Ask trainees for their views on this question. It is one of the most commonly asked questions by those involved with HIV positive children. Although infected children in sub-saharan Africa commonly die within the first few years of life, there are also older, infected children too (e.g. slow progressors, children infected since birth). Also as children have increasing access to ARVs, they will be living for much longer. The issue of disclosure is a growing concern. 46 Paediatric Palliative Care Manual for Home Base Carers

50 Disclosure is the act of informing people about HIV status Adults commonly decide a child with HIV should not be informed until: The child is much older The adult has decided it is time to tell 3. The term disclosure refers to the actual act of informing people about HIV status. Around the world, adults often feel that disclosing the child s HIV diagnosis to that child should be delayed until the child is much older. Adults will decide the best time to tell them. Ask trainees for their thoughts on delaying disclosure to a child until they are older. Opinions on this are commonly influenced by cultural perceptions of childhood, illness and death. Why Wait? Child will not understand or be able to cope To protect the child from knowing they will die To protect the child from stigma and discrimination It will take away the child s hope and will to live Parent is not ready to face questions Not sure how to explain it to a child 4. There are a variety of reasons why people believe it is best to wait before disclosing to a child. Trainees may have expressed their own in addition to those in the slide. The majority of reasons are based on an overwhelming, understandable desire to protect the child. Equally, parents also need protecting (e.g. the parent may have concealed their diagnosis for many years; the child may not understand the need for secrecy). I want my mother to be well again but I don t know how to Why didn t they want me anymore? Why does everybody I love, die? I must have been very, very naughty Why do I need these medicines? My mother has gone but I don t know where? What did I do wrong? Maybe my mother and father didn t love me any more? My mother was sick too and she died. Maybe I will die soon too? 5. However, delaying disclosure to a child also has a great deal of implications. In Module 3: Impact of HIV on Children, we discussed the variety of traumatic events impacting on a child with HIV and the range of emotions they may lead to. The slide shows just a few examples of the way children feel when they do not understand what is happening to them. Not Talking..makes a child more vulnerable! Unable to make sense of what is happening Has no sense of control Imagines things have happened/will happen Blames himself Unable to trust adults 6. Whilst waiting to talk to children about their illness is widely believed to protect them, it actually makes them even more vulnerable. Traumatic events such as the need to take medicines, have blood tests, cope with distressing symptoms and even the loss of a parent do not make sense to the child. This can lead to negative emotions which dramatically affect the child s quality of life. Paediatric Palliative Care Manual for Home Bases Carers 47

51 So He may not need to be told he has HIV But He does need to know what is happening to him and in the world around him Only then can he: Understand it Try to cope with it Become less vulnerable 7. So whilst the child may not need full disclosure of HIV status, he still needs to be able to understand events impacting on him. In other words, HIV does not need to be named, great detail about the illness does not even need to be given. But some information is required to help the child understand and cope with events impacting on him. Not About Disclosure 8. So those involved with caring for children with HIV should be thinking less about a set age for telling a child he/she has HIV. At what age should we tell them they have HIV? Sharing Appropriate Information with the Child What information do they need at this stage to help them understand and cope with the world around them? 9..but more about What information should we be sharing with that individual child, to help him cope with circumstances around him? How can we help to reduce the impact that HIV is having? HIV need not be named. In this way, the child is not being told more than he cope with but just enough appropriate information to help him understand the events affecting him. Not a one-off event! An ongoing process Every Child is Different Sharing Information Gradual provision of developmentallyappropriate explanations for: why they are ill why they need medicines why parents are ill or have died 10. This sharing of information is a process it is NOT a one off event in which the child is told everything about his condition. It takes place gradually over time, providing the child with appropriate information in ways that he is able to understand and cope with. As the picture depicts, it is a long road ahead. Every child is different and these differences dictate what information the child needs, how much they need and when it is needed. 48 Paediatric Palliative Care Manual for Home Base Carers

52 Sharing Information Not just to be considered when difficulties arise Should be incorporated in to everyday practice of those providing care for children with HIV 11. This sharing of information should become an integral part of care for the child and not just when difficulties arise. Incorporating it in to every day practice can help to prevent difficulties arising in the first place. For example, it can become very distressing for families when a child starts refusing medication. This is certainly a sign that the child needs more information about why the medicine is necessary. This struggle may have been avoided if the child had been given information earlier. Sharing Information about HIV 5 important points to consider: Why do children need to know? When is the best time to tell? Who should tell? What should they be told? How should they be told? 12. When sharing information about HIV with children, there are 5 important points to consider: Why?, When?, Who?, What? and How? Remember to stress to trainees that although we talk about sharing information about HIV, this does not necessarily mean naming HIV or giving great detail about the illness. It is only what information may be helpful to the child at that point in time. The following slides describe an approach to Sharing Information with Children about HIV as written by Bodger et al (2002). Why do Children Need to Know? It is their right! Allows them to make informed decisions Allows Participation in their care Increases Sense of control Reduces anxiety Increases self esteem Helps them to develop coping strategies Promotes more effective management of HIV 13. Earlier slides have referred to this. It is the right of every child to be able to express their views and choices and to be heard (UN Convention, 1994). Sharing appropriate information helps them to make informed choices, to participate in care and increases sense of control. If it is not shared, children may imagine or fantasise what is wrong which may be worse than reality. Sharing information helps families to develop coping strategies together. When is the best time to tell them? Commence process following diagnosis Consider developmental stage of individual child Allow for parents/carers readiness to share information Respond to child's questioning Ongoing, regular talks 14. Ideally, the process should begin following diagnosis, with the level of explanations being guided by the child s developmental age and the parents readiness to share information with their child. The first step should be to explore how parents feel about sharing information and how much they are ready to share. There should be on-going dialogue with the parents who need immense support, right from the beginning when a child is diagnosed to much later on when the child knows his/her diagnosis. Paediatric Palliative Care Manual for Home Bases Carers 49

53 More Information? Indications that a child may need more information or a different kind of information include: Child asking questions Refusal to take medication Admission to hospital 15. During this gradual process of sharing information, there will be indications that the child is in need of more information if he is to understand events affecting him. A child will often show this directly through asking questions (e.g. Why do I need these medicines?, Why do I need the blood test?). Refusal to take medication is commonly the child s way of expressing he does not understand what is happening to him. More information may help a child when admitted to hospital as this can be a time of great distress for a child. When NOT to Share Information There may be times when sharing information may not be appropriate and should be delayed Reluctance of parent/carer Family problems Child or Parent are unwell Times of loss or social change Inadequate support for the child and family The rights of the family must be respected whilst acting in the best interests of the child at all times 16. There are times when it may be detrimental to share information. Most importantly, the parent/carer must be ready. If they are not ready and information is shared, this could be extremely damaging to the parent/child relationship, not to mention professional/parent relationship. This process should be led by the parent, and their wishes must be respected. Although more information may help some children during times of difficulties (e.g. illness), there may be occasions when additional information would be too much for the child to cope with. Every child is different and should be managed accordingly. Who should tell them? Parents/carers The Ideal A great deal of support is required Initial information is usually little problem More detailed information and actual disclosure is more difficult Children may have lots of questions which parents/carers need help answering Professionals Doctors, Nurses, Psychologists, Social workers In partnership with parent/carer 17. A number of professionals may be involved in supporting the parents and thinking about what information to share with the child. Yet, ideally, it should be the parent or carer who actually shares the information. Commonly, parents feel confident explaining initial information (e.g. germs, illnesses) but need more support and advice as explanations become more detailed. Preparing parents for questions from the child should begin very early on after the child has been diagnosed so that they are confident with what they want to say. Children tend to ask questions when least expected if the parent is unprepared they may confuse the child or resort to lying. 50 Paediatric Palliative Care Manual for Home Base Carers

54 Caution! Different people telling the child different things could lead to more problems Information shared in the wrong way, at the wrong time by people not trained to do it, could be harmful to the child and family Sharing Information with Children about HIV should be handled very carefully by an identified group of people They MUST liaise over what will be said, what has been said and how the child and family are responding 18. Children with HIV commonly have a variety of different people involved in their care. There is a danger that different people may be providing the child with conflicting explanations about their circumstances, leading the child to be more confused than before and even resulting in mistrust of those trying to help. Regular liaison between professionals involved can help to avoid this, through agreement of what has been said, what will be said and by whom. The parent(s) and their wishes should be central to these discussions. What should they be told? Information driven by child's questions Depends on developmental stage Depends on current knowledge, beliefs and understanding of: - The body -Sickness - Infections - Medication - Death 19. There can be no set age at which certain information should be given. Conversations need to be driven by the child s questions or concerns and proceed at their own pace. Every child s needs are different and depend on their developmental age and their own individual circumstances. Whilst one 9 year old may need a great deal of information and the parents are ready to share this, an 11 year old may appear to be coping quite well with more basic information. 2-4 Year Old Need simple explanations about Why people are doing the things they are doing You are not sick because you were bad or naughty Germs cause colds Medicine helps you get better 20. Younger children tend to need simple explanations about why people are doing the things they are in relation to their condition. For example, children may think they have done something wrong and they need reassurance that the blood test or medicines are not because they were bad or naughty. Explanations need to be concrete and linked to things that are happening to them (e.g. Germs cause colds; When you get sick, these medicines help you to get better again). 5-7 Year Old Need more specific details of illness Warriors and baddies in the blood Warriors fight off the germs Need to link illness to treatment Medicine helps the warriors fight off the baddies Your warriors are not as strong as some peoples, so you need medicines to help your warriors fight the baddies year old children tend to need to know more about what is happening. They need more specific details of illness, linking the illness to treatment. Locally appropriate analogies should be used (e.g. Warriors in the blood must be strong if they are to fight off the germs. Some people have warriors that are not so strong and they need medicine to help them ) Paediatric Palliative Care Manual for Home Bases Carers 51

55 Need to know why things are happening and what it means Blood tests and clinic appointments Keep themselves and others safe and healthy Eventually need to be able to name the condition They can then be involved in decisions about their own care 8-11 Year Old 22. Older children need to know Why things are happening and What it means. They need to know how to keep themselves and others safe and healthy. Eventually they need to be able to give a name to their condition so that they can be involved in decisions about their treatment and make appropriate decisions and choices from an informed position. Have a right to know their status Can make informed choices about their own care Adolescents Need to be aware of their status so that they can protect themselves and others when sexually active 23. Adolescents have a right to know their status and to have access to appropriate information so that they may make informed choices about the care that they receive. The need to fully disclose may be prompted by an adolescent s sexual development and sex education. This can be challenging when parents are still not ready to disclose their child s HIV status. Parents need a great deal of support whilst also considering the best interests of the adolescent. How Should they be Told? Together, in partnership with family Dependant on: Age Developmental level Family circumstances Environment 24. Information must always be shared in partnership with the family and ideally, by the parent/carer themselves. How to share the information depends on a number of factors as listed in the slide. Every child will be different and the environment within which it is carried out and the actual process will depend on these factors. How Should they be Told? Use of appropriate language Manageable amounts of information Repeat information Never tell lies!! Concept of private information and who they can share this with Keep records of discussions Plan for follow-up and ongoing discussions 25. Words and terms that the child is familiar with must be used (e.g. germs not virus). This is an on-going process so do not give too much new information the child needs time to take it in, think about it and come back with questions. NEVER tell lies this is usually done out of desperation and not knowing what to say. However lying only leads to problems in the future when the child discovers he has been lied to (e.g. Why should he believe that ARVs must be taken regularly if he has been lied to about other things?). The child needs to be clear who he can talk about his illness with children usually need someone to tell and identifying 52 Paediatric Palliative Care Manual for Home Base Carers

56 a person that it is safe to talk to helps them and the parent. If possible, make a record of what has been discussed with the child and how things were explained to ensure future sessions are consistent. Always make a plan for the next session. Listen! Make the child feel the most important thing to you at that time Be attentive & responsive, making eye contact at all times Show you care and understand about what they are saying Look at things from the child s point of view Use positive body language 26. An ability to listen to the child is essential. He must know and trust that his thoughts and feelings are important to you. Listening enables us to try to understand how he perceives events in his life, the impact HIV is having and what information he requires to help him understand and cope better. Looking at these events from the child s point of view is the only way we can get this right! Listen NEVER Judge the child Look bored Show surprise or shock Interrupt or disagree End conversations abruptly Finish without resolving issues 27. If a child feels judged, misunderstood or as if the adult is not interested, he will not want to express his thoughts and feelings. Not only will this compound any emotions he already had (e.g. this may make him feel more lonely and helpless), but it is then impossible to fully understand the effect his illness and events in his life are affecting him. It is then very difficult to help the child. Be Prepared! When the time comes to name the actual condition, the child may well have already guessed, have had an idea, or be completely shocked Commonly asked questions include: Will I die? How did I get it? Who else has it? Why was I not told before? Who else knows I have got it? Answers may vary depending on the child s circumstances Always respond openly and honestly! 28. Every child is different some children may have no idea about their diagnosis. Others may have strong suspicions. Whichever, they will commonly have lots of questions and it is essential that parents are prepared and confident with what they want to say. They will need a great deal of support and this should start very early on in the process. These may be questions that the parent themselves is still coming to terms with. Paediatric Palliative Care Manual for Home Bases Carers 53

57 Don t Stop There! The child and family now need on-going opportunities to ask questions and discuss issues further if they wish Monitor the child changes in behaviour or sleep pattern may be a sign that the child is having difficulty coping 29. In many ways, naming the diagnosis is only the beginning. The child will usually have lots of questions as they come to terms with their diagnosis. The child AND family need immense support and it is vital that the child and family feel able to access such support. The child should be monitored closely as a difficulty in coping with the diagnosis may be expressed through behaviour change, and this is an indication that more support is required. Remember! Always provide the child with opportunities to express themselves 30. As discussed in Module 4: Helping Children to Cope with HIV, there are a variety of methods for helping children to express themselves. These can prove extremely powerful tools and just require some creative thinking. As discussed in Module 4, this picture in the slide has been drawn by a 5 year old girl with HIV she has drawn herself lying down in bed as she is sick. The nurse has come to give her the medicines she must take. The Ideal End Point! the child has full knowledge and understanding of his condition after a process of sharing information over a number of years in partnership with the family 31. The ideal end point of this process of sharing appropriate, relevant information is that the child has full knowledge and understanding of his/her HIV infection. Yet this should be the result of perhaps many years in which the child has been given more and more information, as and when it is needed, in a way that he can cope with. It should have been led by the parent/carer, with a great deal of support from professionals. Alex Alex is 9 Years Old He is HIV positive His mother is worried as Alex is asking lots of questions about why he needs to take medicine What would you advise his mother? 32. Ask trainees to consider what they have learnt from this module and apply it to the case study of Alex. What are the issues and how may they help Alex and his mother? Alex is at an age where he may well require more detailed information about his illness. He has clearly expressed this himself through his questions to his mother. The first step is to discuss with his mother what Alex already understands about his medicines and how she feels about sharing more information with him. These will both direct the next stage. 54 Paediatric Palliative Care Manual for Home Base Carers

58 Summary Sharing Information with Children about HIV helps them to cope better with events in their lives It is a gradual process, often taking years It is always done in partnership with parents/main carers As a child s understanding and development advances, more detailed explanations may be given Natural opportunities usually arise eg child asking questions 33. Whilst disclosure implies a one-off event and this is often delayed until later years, children with HIV actually require information prior to that in order to help them cope better. Sharing Information may take place over a number of years, gradually providing more detailed information as and when the child needs it and can cope with it. It MUST be done in close partnership with the parent/carer, ideally being led by the parent. Summary Knowing and understanding the child is very important Sharing Information must be handled extremely carefully by an identified group of people Always talk openly and honestly with children Provide opportunities for children to express their feelings Listen to them! ALWAYS follow up the child 34. Sharing information well can dramatically improve a child s quality of life. Sharing it badly can be disastrous! It should be handled very carefully by people trained to do it. These people need to communicate regularly regarding what is to be said to the child, always respecting both the wishes of the parents and the best interests of the child. Create opportunities where children are able to ask questions and express themselves. Children s questions must be answered honestly. NEVER LIE! Paediatric Palliative Care Manual for Home Bases Carers 55

59 Module 6 Nutrition in Children with HIV Module Objectives To demonstrate that children with HIV are at risk of malnutrition To ensure trainees are able to recognise children with malnutrition To discuss feeding options for babies of HIV positive mothers where the child s HIV status is not known To review feeding recommendations for children with confirmed HIV infection To discuss barriers to good nutrition and strategies for dealing with these Slide Presentation: Nutrition in Children with HIV Nutrition in Children with HIV Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of nutrition in children with HIV, challenges they have faced and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Small Grant Scheme HIV and Malnutrition Children with HIV are more likely to become malnourished than other children 2. Children with HIV are at risk of malnutrition. Ask trainees which of these children in the slide are malnourished. Do they see children like this? All three children have severe malnutrition. The children on the left and on the right both have marasmus and the child in the middle has kwashiorkor, two different types of malnutrition. These will be discussed in the following slides. 56 Paediatric Palliative Care Manual for Home Base Carers

60 Recurrent illnesses Diarrhoea (prevents body from absorbing nutrients) Loss of appetite Mouth Infections Poor access to nutritious foods? Ability of carer to prepare nutritious foods Loss of household income due to death of parent Why? 3. Ask trainees why children with HIV are more likely to become malnourished. The reasons are many and varied as listed on the slide. Recurrent infections lead to reduced oral intake or loss of nutrients (e.g. diarrhoea). The symptoms of HIV and infections commonly make it difficult or painful to eat. Access to nutritious foods or preparation of nutritious meals may be poor and this is exacerbated where family members are sick or deceased. Increased nutritional needs reduced intake and increased loss of nutrients HIV and Nutrition Poor Nutrition HIV Poor ability to fight HIV and other infections Increased vulnerability to infections, poor health, earlier and faster progression to AIDS National Department of Health, South Africa, This diagram demonstrates the cycle of poor nutrition faced by an HIV-positive individual. Moving clockwise from the top, poor nutrition decreases the individual s ability to fight HIV and opportunistic infections. They therefore acquire infections and their immune system and overall health deteriorates further. Due to the infections, the individual has increased nutritional requirements yet has reduced oral intake (e.g. oral problems, decreased appetite) and increased loss of nutrients (e.g. diarrhoea). In turn, this leads to poor nutrition. And the cycle continues. Malnutrition and Diarrhoea Malnutrition can make diarrhoea more severe If a child is malnourished, he cannot digest food properly and the stomach wall is weakened Food is therefore not absorbed properly and lost a s diarrhoea 5. Not only will diarrhoea lead to malnutrition but malnutrition itself will make diarrhoea more severe. This is a vicious cycle. A malnourished child cannot digest food properly and the stomach wall is weakened. Consequently, the nutrients which the child desperately needs are not absorbed in to the body and are lost as diarrhoea. This in turn leads to malnutrition. Psychological Changes 6. Malnutrition has extremely serious, lifethreatening implications but it also causes immense psychological changes in a child too. The 2 year old boy on the left of the picture is malnourished. He was admitted to hospital with diarrhoea, loss of weight and oedema in his legs. The picture shows him lying down, withdrawn, not smiling, playing or interacting. The boy in the picture on the right is the same boy after a few weeks of treatment for malnutrition. He is now sitting up happily, smiling and interacting. Trainees need to be aware of the importance of both the physical signs and the psychological signs of malnutrition. Paediatric Palliative Care Manual for Home Bases Carers 57

61 This Child is Not Fat! Note!! Kwashiokor Appears fat due to oedema The child is actually wasted Moon face and muscle wasting in shoulder muscles Thin hair, falls out easily 7. Ask trainees to comment on the 19 month old boy in the picture. He may appear to some as fat and well nourished. However, this little boy has kwashiorkor. He has not had enough of the right foods, particularly protein. Kwashiorkor is characterised by oedema (swelling), especially in the legs, feet and face. The oedema is often confused with fat. Not all the fat is lost so they do not appear as thin as marasmic children but the muscles become wasted. This can usually be seen in the shoulders and tops of the arms. Skin often becomes cracked and peels. Hair becomes reddish and thin. Kwashiorkor typically occurs later than Marasmus, between the ages of 18 and 48 months. Severe Kwashiorkor Child 1: Flaking paint rash Skin very thin and weak Child 2: Flaking paint rash Sores on face Sunken eyes & loss of skin Oedema has cleared with dehydration Child 3: Skin sores following diarrhoea 8. The skin of children with Kwashiorkor is extremely thin and weak. A flaking paint rash may occur as shown in Picture 1. The skin cannot grow and repair itself normally. Picture 2 shows the perineum of the same child as picture 1. The child in picture 3 also has a flaking paint rash. The skin on his hips has peeled off leaving sores. He also has sores on his face which are common where children are deficient in nutrients. The child in picture 2 does have kwashiorkor but is also severely dehydrated. He has sunken eyes and loss of skin elasticity on skin pinch. There is no oedema due to the dehydration but this may return when the child is rehydrated. Road To Health Chart 9. Ask trainees if they are familiar with this chart. Every child should have a Road To Health Chart. This documents the child s weight at different ages, head circumference and the dates of immunisations. Every time the child is weighed (check local policy for how often this should take place) the weight should be recorded on the chart. On the left of the chart is the weight. On the bottom of the chart is the age. The first point (far left) is the child s weight at birth. The two solid black lines are called centiles and represent the average weights for children at different ages. The child should follow one of these lines (i.e. not necessarily match the line exactly but follow the curve in the same pattern). The child will then be gaining weight as expected for his age. However, if the child does not follow these lines (e.g. the lines starts falling or flattening) this is a sign that the child is not gaining weight and may be malnourished or at risk of malnutrition. The chart in the slide 58 Paediatric Palliative Care Manual for Home Base Carers

62 shows the line was following the curve for the first few months - the child was gaining weight well. However, then the line started flattening, there was no weight increase and the line eventually dropped. The line increases again once the child received treatment. However, concern for this child should have been raised much earlier when the line started flattening and interventions could have been made then. These charts are essential tools for monitoring the child s growth and anticipating growth failure or malnutrition. Mid Upper Arm Circumference Arm circumference is the same between 1 and 5 years Useful measure of malnutrition More than 13.5 cm = well nourished Picture 2 = child is malnourished MUAC 10. MUAC is one method of assessing wasting, an important sign of malnutrition. A child may be wasted without looking very thin or marasmic. Wasting can develop very quickly. Measuring Mid Upper Arm Circumference or MUAC is a cheap, useful way of assessing this. It uses the principle that a child s arm circumference does not alter much between the ages of 1 and 5 years. If a child s arm circumference is more than 13.5cm, the child is probably well nourished. If it is less than 13.5cm he is probably mildly undernourished. If it is less than 12.5cm, he is probably severely undernourished. MUAC is a good tool but those using it must be trained to do it properly if measurements are to be reliable. Nutritional Support for Children with HIV Essential throughout the course of illness Should start as early as possible To prevent them getting infections To help them recover from infections To promote the child s growth To improve quality of life 11. Children with HIV need nutritional support throughout the course of their illness. The importance of good nutrition cannot be emphasised enough. Trainees have an essential role to play in providing families with such support and education. Food Hygiene A child with HIV will get sick very easily if food is not prepared in a hygienic way. Always counsel carer about: Hand Washing Clean surfaces and utensils Cook food thoroughly Avoid contact between raw foodstuffs and cooked foods Serve food immediately after preparation Only store cooked foods in fridge or cool place Store in fridge for one or two days only) 12. As already stated, one of the major causes of diarrhoea is unhygienic preparation and storage of food. This poses a great risk to anyone, but particularly children with HIV. They are unable to fight the infections and the complications of infections. These may be lifethreatening. This and the next slide list various strategies for ensuring good food hygiene. Paediatric Palliative Care Manual for Home Bases Carers 59

63 Food Hygiene If food is reheated, do so at a high temperature Wash fruits and vegetables before serving Use safe water that is boiled or filtered Clean cups and bowls 13. These principles of food hygiene should be taught to families in the home. They are important not only for the protection of the child with HIV but for the whole family. These principles should be being adopted by all. Never use bottles for feeding babies unless the bottles and teats can be thoroughly sterilised Protect foods from insects, rodents, and other animals Store non-perishable foodstuffs in a safe place No food available If there is no food available in the house Refer to the Social Worker Ensure local schemes and grants are accessed and received by carer When food supplements are given, ensure carer knows how to use them properly 14. Where there is no food available in the home, it is essential that the child and family are referred urgently to the Social Worker. Here it is useful for trainees to be made aware of local grants and food schemes/programmes and the referral process. They may then be able to refer children and families who are eligible. Good Foods for the Immune System Important Vitamins and Minerals Vitamin A Vitamin C Vitamin E Selenium Zinc Best Food Sources All yellow, orange and green fruit and vegetables, especially melon, mangoes and paw paw; milk, garlic, egg yolk, liver Sweet peppers, raw leafy green vegetables, all fruits, especially guava, baobab pulp, grapefruit and tomatoes Cold-pressed vegetable oils, nuts and seeds, whole grains, eggs, legumes, dark green vegetables, wheat germ Brown rice, nuts, seafood, liver, egg yolk, onions, garlic, meat, whole grains, milk Functions To make white blood cells; for vision, healthy skin, teeth and bone development; protection against infection; antioxidant Builds healthy bones, teeth and gums; helps fight infection; antioxidants; Vitamin C helps the body to take up iron in the blood Increases disease resistance; protects fats and vitamins A and C from oxidation; prevents ageing; treats scar tissue; antioxidant Prevents oxidation and breakdown of fat and other body cells; antioxidant Protects the immune system; needed for leafy, green vegetables, oily fish, nuts, digestion and enzymes; prevents HIV locking meat, whole grains, egg yolk, garlic, on to CD4 cells, promotes wound healing; Vit A chicken) metabolism Adapted from Francis, 2003) 15. Whilst it is important to know the nutritional value of local foods and understand the concept of a balanced diet, the diet may be greatly enhanced through an understanding that certain foods are particularly good for the immune system. Examples are listed in the slide and many of these may be grown by families themselves. Breastfeeding and HIV HIV may be passed from an HIV positive mother to her child during breastfeeding So, if the baby has not already been infected during pregnancy or during delivery, he/she may be infected during breastfeeding HIV positive mothers therefore need counselling about feeding options for their babies 16. If a child has been born and escaped infection during pregnancy and delivery, the child may then be infected during breastfeeding. This has led to great debate and confusion surrounding feeding options for mothers. After years of promoting Breast is Best, health professionals have faced dilemmas in recent years as to what to recommend now. Women need counselling about the different options, the pros and cons of each and they may then be in a position to make a choice according to their own individual circumstances. 60 Paediatric Palliative Care Manual for Home Base Carers

64 Counsel the Mother Breast feeding Formula Feeding Increases the risk of passing HIV to her baby Provides the baby with nutrients and protection against other infections Provides comfort and close bonding between mother and child Free and readily available! HIV cannot be passed by exclusive formula feeding Does not provide the same nutrition or protection against infections Increases the risk of other infections from dirty water, unhygienic preparation of formula milk 17. The slide lists the pros and cons of breast feeding versus formula feeding. Breastfeeding does increase the risk of HIV transmission IF THE BABY HAS NOT ALREADY BEEN INFECTED DURING PREGNANCY OR DELIVERY. However, breastfeeding offers the best nutrition for the child and, importantly, antibodies for protection against infections. It provides comfort, aids bonding, it is free and it is readily available. Formula feeding has the advantage that HIV can not be transmitted to the child through formula feeding. However, it does not offer the same nutrition and protection and is expensive. Importantly, where formula feeds cannot be prepared in a sterile manner, there is an extremely high risk of the child acquiring diarrhoeal disease. Counsel the Mother Mothers must be counselled so that they can make their own decision There is some evidence that Mixed Feeding increases the risk of HIV infection Mixed Feeding = breast feeding AND any other fluids ie formula, juice etc 18. It is clear that there are pros and cons to both options. It is important to stress that the mother should be given all the information and support she requires so that she can make her own decision. For example, a mother may understand that formula feeding will prevent the risk of passing HIV to her baby yet knows she has no money for formula milk and no access to clean water to prepare the formula. Another mother may decide that whilst her money is limited, she would have enough to buy formula and sterilisation fluid. There is some evidence that the greatest risk of transmitting HIV to the baby is through mixed feeding. If a child is breastfed for some feeds and bottle fed for others, HIV is more likely to be transmitted. This is because the formula feed affects the lining of the gut, making it more absorbent. When breast milk is then ingested by the baby, any HIV in the milk is much more likely to cross in to the blood stream. If a baby is breast fed, it must be EXCLUSIVE breastfeeding i.e. NO OTHER FEEDS. When the mother decides to stop breastfeeding, it should be stopped at once. The baby should be changed to formula or other feeds and breastfeeding should never be carried out again. Paediatric Palliative Care Manual for Home Bases Carers 61

65 Counsel the Mother Mothers with HIV should be advised to either: Exclusively breast feed up to 6 months of age DO not give other foods or fluids Rapid change from breast milk to none at 4-6 months OR Exclusively formula feed No breast milk at all Give formula feed or modified cow s milk Counsel the Mother For a child who is being breastfed: If at 4-6 months, it is confirmed that the child has HIV, the mother may continue to breastfeed There is no danger of her passing HIV to her child through breastfeeding as the child is already infected Counsel the Mother We also know that the risk of passing HIV to the child through breastfeeding may be increased by: Sore, cracked nipples Mastitis Thrush Breast abscesses Oral thrush in the baby High levels of virus in the mother New infection in the mother A breastfeeding mother needs counselling on preventing/treating all of the above Some General Principles A child with HIV needs: More food than other children, particularly when he is ill A variety of different foods (once foods introduced) Family foods more nutritious, healthier and cheaper To drink more when they do not feel like eating 2-3 glasses of fresh milk over 1 year of age At least 3 glasses of clean water every day Margarine and oil added when cooking food 19. So in order to reduce the risk of HIV transmission through breastfeeding, mothers should be given the information then counselled to either exclusively breast feed or exclusively formula feed. It is essential that mothers understand this although the practical implications are great (e.g. if the mother has switched from exclusive breastfeeding to exclusive formula feeds but the baby then refuses to settle, he must not be put back on the breast). 20. If the mother chose to exclusively breast feed her baby and at 4-6 months, it is confirmed that the baby has HIV, the mother may continue to breastfeed. The baby already has HIV and there is therefore no need to try and prevent transmission. Breastfeeding poses no risk to the child and the child can benefit from the nutritious, sterile milk from the mother. Conversely, the babies of HIV-positive mothers whose diagnosis is not known at 4-6 months should now be weaned and breastfeeding stopped straight without going back to it. 21. The risk of HIV transmission through breast feeding is increased by the other factors associated with the mother s health. Examples are listed in the slide. Any infection of the breasts increases the chance of HIVinfected fluid being passed to the child during breast feeding. If the child has oral thrush, sores in the mouth serve as entry points for HIV in the breast milk. If the mother is unwell or has been newly infected she will have high levels of HIV in her blood and breast milk. This increases the chance that HIV may be passed through breastfeeding. For this reason, any of these conditions need rapid attention in order that they may be treated appropriately and the risk of transmission is reduced. 22. This slide and the next list some general principles which should be applied to promote a good nutritious diet. In practice, they may not all be realistic in the homes which trainees visit. These issues should be discussed and efforts made to resolve them in ways that are locally appropriate. In general, families should be encouraged to adopt a balanced diet using a combination of locally available foods, enhanced with foods that are known to enhance the immune system. Protein is usually the most significant component of a balanced diet which is lacking. 62 Paediatric Palliative Care Manual for Home Base Carers

66 Some General Principles At least one portion of fish/chicken/meat/dry beans/eggs/peanut per day Sweets, chocolates and crisps should not replace food Dry beans have the same nutritional value as meat and can be eaten as often as possible Bread, pap, samp, rice, mealies as much as the child wants, provided they are mixed with meat/beans/fish/ chicken/sour milk/peanut butter Plant a vegetable garden Eat at least 1 fruit or vegetable (not potato) every day Make food look and taste good 23. The South African IMCI guidelines (2002) makes feeding recommendations for children with HIV. These are listed over the next 5 slides and trainees have an extremely important role to play in educating parents/carers about these general principles, the different types of food and the quantity of food that children need in order to ensure good nutrition. Using their knowledge of locally available, nutritious foods and the importance of a balanced diet, Home Based Carers can assist parents/carers in promoting good nutrition for their child. Up to 6 Months of Age Breastfeed as often as the child wants, day and night Feed at least 8 times in 24 hours Do not give other foods or fluids IMCI, 2002) 24. The issue of breastfeeding versus formula feeding has already been discussed. This and the following slides now outline the IMCI recommendations for children with HIV. As it has been confirmed that the child has HIV, the child should now ideally be breastfed up to 6 months of age. Other foods or fluids should be avoided at this stage. Breast milk will provide the nutrition the baby requires, if fed at least 8 times in 24 hours. 6 to 12 Months (HIV Confirmed) Continue to breastfeed as often as the child wants Give 3 servings of nutritious complementary foods ALWAYS mix margarine, fat, oil, peanut butter or ground nuts with porridge Also add: Chicken, egg, beans, fish or full cream milk Or Mashed fruit and vegetables, at least once each day IMCI, 2002) 25. Between 6 and 12 months, the child who is known to be HIV infected should ideally continue to breastfeed but now also be receiving nutritious complementary foods. Breastfeeding alone is not enough. Children at this age commonly become malnourished if they remain solely breastfed. These are described in slides 22 and 23 under general principles but this should be enhanced by discussion on the nutritional value of foods used locally. Adding margarine, fat and oil are an effective way to ensure fat in the diet whilst peanut butter or ground nuts are rich in protein - assuming these are available Months If baby is not breastfed, give 3 cups (3x200ml) of full cream milk as well If baby gets no milk, give 6 complementary feeds per day 26. The South African IMCI (2002) recommends that if the child is not breast fed, the diet be enhanced with full cream milk, if available. Where there is no milk in the diet, 6 complementary feeds should be given. IMCI, 2002) Paediatric Palliative Care Manual for Home Bases Carers 63

67 1 2 Years Continue to breastfeed as often as the child wants Breast milk is still an important food at this age and helps prevent infections Give at least 5 adequate nutritious feeds Increase the variety and quantity with family foods: Mix margarine, fat, oil, peanut butter or ground nuts with porridge Give egg, meat, fish or beans daily Give fruit or vegetables twice every day Give milk every day, especially if no longer breastfeeding Feed actively with her own serving IMCI, 2002) 27. Between the ages of 1 and 2 years, breast feeding should be continued. The breast milk is particularly important for a child with HIV in order to help prevent infections. This is another risky period for a child as the mother may now have another child. The new child is now breast fed instead. The same principles apply at this age, with the need for a balanced, mixed diet with plenty of protein, fruit and vegetables but the quantities need to be increased. The child needs more and more food to ensure he grows well and to make his immune system strong. 2 Years and Older Give the child his own serving of family foods 3 times a day 28. At 2 years and beyond, the child should be eating family foods with the family. A mixed, balanced diet is essential. In addition, give 2 nutritious snacks such as bread with peanut butter, full cream milk or fresh fruit between meals Continue active feeding IMCI, 2002) During Illness Remember to encourage feeding during illness and to advise an extra meal a day for one week after an illness 29. Drawing on what they have learnt so far, ask trainees why all children, but particularly children with HIV, need more food during illness. During illness, a child needs more energy in order to help him fight the infection itself and to cope with the effects of the infection. He is at great risk of malnutrition. In Module 13: Diarrhoea and Dehydration, the risk of malnutrition with diarrhoea will be discussed further. A sick child is at great risk of malnutrition. Trainees need to encourage parents/carers to be giving more food to the child during illness but also for one week afterwards in order to help the child regain the weight that was lost. 64 Paediatric Palliative Care Manual for Home Base Carers

68 A child with HIV commonly has a poor appetite Plan small frequent meals Give milk rather than other fluids except where there is diarrhoea with some dehydration Give foods with a high energy input Give snacks between meals Check for and treat oral thrush & mouth ulcers Poor Appetite 30. There are several conditions which pose particular threat to the promotion of good nutrition in children with HIV. The first common one is that children with HIV often have a poor appetite and are reluctant to eat. This can be distressing and frustrating for carers who are concerned for the child. Strategies are listed here which may help to encourage the child to eat. The child and family need a great deal of support. Nausea and Vomiting The child must eat! Give food that he likes Small regular meals and rest after eating Drink fluids between meals and not with meals Cold foods may be better than warm cooked foods Eat bread, porridge and rice without gravies 31. Nausea and vomiting are not only common due to HIV infection itself but due to opportunistic infections and the side effects of drugs. Contrary to popular belief, a child with HIV who is nauseous and vomiting MUST eat. This is extremely important if they are not to become malnourished which would then place them at increased risk of infections which they cannot fight. Various strategies are listed here and on the next slide. Nausea and Vomiting Drink extra fluids ORS Eat before taking medicines Dry toast, rusks and dry crackers may help to relieve nausea Avoid fatty, sweet food 32. In addition to the strategies listed here, the child may also need symptom control using anti-emetics. A child with nausea and vomiting needs extremely close monitoring and referral to the doctor, not only to promote nutrition but to ensure the child s symptoms are controlled and dehydration is prevented. Avoid tea and coffee, milk and milk products, spicy food Mouth Sores Give paracetamol 30 minutes before feeds Do not give acidic (sour) cold drinks like orange juice Sour milk and porridge are allowed Soft and mashed food is easier to eat (eggs, mashed potatoes, pumpkin, avocado Avoid spicy, salty and rough foods Chop foods finely and give cold drinks or crushed ice, if available 33. As will be discussed in Module 10: Oral Problems, children with HIV commonly experience extremely painful oral problems. Ask trainees to name some of these and to describe their experiences of children with oral problems. A child with painful oral problems may be reluctant to eat or drink. This can often be managed well by ensuring the child receives adequate pain relief 30 minutes prior to food. This may not be easy as children do not always eat at regular times. However, giving the child analgesia regularly would be even more effective as this will achieve better, all-round symptom control and encourage oral intake. Trainees need to be able to advise parents/carers about the types of foods to avoid and which to encourage as listed in the slide. Paediatric Palliative Care Manual for Home Bases Carers 65

69 Diarrhoea Drink enough fluids and ORS every time the child has to go to the toilet The child must eat! Bread, rice, pap and porridge good DO not give the child the skin and pips of fruit or vegetables (eg peas and beans) DO not give food left over from previous day 34. A child with diarrhoea is at great risk of malnutrition as the nutrients in the food are not absorbed as they pass through the digestive system. In the same way that a child with nausea and vomiting must eat, so must a child with diarrhoea. It is extremely important that parents/carers understand this and are advised which foods to give the child. Some nutrients will be absorbed even though it appears it is all lost as diarrhoea. This will be discussed further in Module 13: Diarrhoea and Dehydration. Monitor the child s feeding skills May have to change texture and consistency of food Modify eating techniques and utensils Refer to speech therapy for assistance with feeding Encephalopathy 35. Children with HIV may develop neurological problems, affecting their physical and mental ability. Some children may regress, where they lose milestones or abilities that they had already achieved. For example, a child may lose the ability to feed himself. Other children may lose muscle tone and be unable to swallow or eat properly. Children may develop spasticity or rigidity. These will be discussed further in Module 14: Neurological Problems. These may make it difficult for the child to eat. The child s dependence on the carer may increase greatly. Feeding the child may be difficult and time-consuming. Children and families need a great deal of support generally but particularly with regard to nutrition. Ideally, the family will be referred to a neurologist to explore the extent of neurological problems. Also, social workers to explore ways of working with any impairment and access to financial assistance. Poor Weight Gain Counsel the mother about feeding practices used Advise mother about foods to give as per recommendations already outlined Give the child an extra meal each day Offer snacks that he likes Ensure child is weighed again in 14 days 36. As discussed earlier, children with poor weight gain are commonly malnourished or at risk of malnutrition. The Road to Health Chart provides extremely useful information about the child s weight and weight gain. This should be checked regularly to identify poor weight gain well before the child becomes malnourished. Parents/carers need support and practical advice about which foods to be giving the child as already discussed. An additional meal a day will help yet will depend on the availability of food in the home. Children should be referred to social workers for grants or the Protein Energy Malnutrition Scheme as discussed next. 66 Paediatric Palliative Care Manual for Home Base Carers

70 Protein-Energy Malnutrition Scheme Administered by local authorities Part of Integrated Nutrition Programme Provides food supplements to those children underweight (below 3 rd percentile on the Road to Health Chart) All children are eligible to benefit from the PEM scheme Should not be administered in isolation Also refer to existing community support agencies 37. Access to the Protein Energy Malnutrition scheme will vary depending on the location of the Home Based Care Team. Variants may exist in which the local authority supports childhood nutrition. Trainees need to be aware of any local schemes to which they may refer a child with malnutrition or at risk of malnutrition. This should cover the criteria for referral and the referral process itself. Remember! If a child is sick, he not only needs more food but also more fluids If child is breastfed, breast feed more frequently and for longer at each feed Increase other fluids ef give soft porridge, amasi, SSS or clean water If the child has diarrhoea, giving extra fluids can be life-saving 38. In addition to requiring more food, a sick child also needs more fluids. This will be covered in detail in Module 13: Diarrhoea and Dehydration but an introduction to the module s recommendations are included here on the slide. A child with fever is also at risk of dehydration as will be discussed in Module 11: Fever. Breast Feeding Problems Common reasons why mothers add other feeds or stop breastfeeding: Problems with Positioning and Attachment Not Enough Milk Sore or Cracked Nipples The Baby Feeds often or cries a lot Usually, mother has enough milk but lacks confidence that it is enough Observe feeding practice and advise on attachment and Positioning Offer support and encouragement 39. Breastfeeding provides children with nutritious milk but women all over the world are stopping breastfeeding or adding top-up feeds for a variety of reasons as listed here. These are usually related to the mother s lack of confidence and misconception that she does not have enough milk. These issues need to be addressed in order to resolve the problems women are experiencing, thus helping them to continue with breastfeeding. Safe Preparation of Formula Milk Always use a marked cup or glass and spoon to measure water and the scoop to measure the formula powder Wash your hands before preparing a feed Bring the water to the boil and then let it cool. Keep it covered while it cools Follow te instructions on the tin, ensuring the scoops of powder are LEVEL and the powder and water are MIXED WELL Feed the baby using a cup Wash the utensils 40. Formula milk is carefully calculated to ensure that the child receives the correct nutrients in the correct proportions. If formula milk is not prepared properly, the child will not receive the nutrition he requires and is at risk of becoming malnourished. It must be ensured that parents/carers who have chosen to bottle feed are fully aware of how to prepare the formula milk accurately and in a clean, sterile manner. If the milk is not prepared in a sterile manner, the child is at significant risk of diarrhoeal infections which will also result in malnutrition. A child with HIV is unable to fight these infections and they may be very difficult to treat. Paediatric Palliative Care Manual for Home Bases Carers 67

71 How to Feed a Baby with a Cup Hold the baby sitting upright or semi-upright on your lap Hold a small cup of milk to the baby s lips - tip the cup so the milk just touches the baby s lips - the cup rests gently on the baby s lower lip and the edges of - the cup touch the outer part of the baby s upper lip - the baby becomes alert and opens his mouth and eyes Do not pour the milk in to the baby s mouth. Just hold the cup t his lips and let him take it himself When the baby has had enough he closes his mouth and will not take any more 41. Ideally, children should be fed formula milk using a cup. Even very young babies can take milk in this way and the risk of infections from non-sterile feeding bottles is significantly reduced. Increasingly, parents/carers are using this method but it will take time and education before it is widely adopted. It may take some practice before parents/carers feel confident doing this so they will need support and encouragement. Counsel the Mother If the mother or main carer is sick or malnourished, she will be unable to care for the child Counsel the mother to keep up her own strength and health Advise her about her own nutrition and the importance of a well balanced diet to keep herself healthy 42. If the mother or main carer of the child is sick herself, she will be unable to care for the child. In addition to the advice given about feeding the child, the mother must also be counselled in how to ensure good nutrition for herself. Stress that she needs a balanced diet, meaning that she gets a combination of good foods. Give advice on the nutritional values of different, locally available foods and their preparation. So How Can You Help? You have a vital role to play in identifying potential problems and preventing malnutrition. Check the Road to Health Card Explain the importance of weight checks to the carer Advice the carer about the foods required by the child Counsel the mother about food preparation and availability Refer any concerns! 43. Ask trainees to summarise what they have learnt during this session. A variety of issues have been raised, all within which the trainees have a vital role to play. Good nutrition is one of the most important factors in promoting the well being of children with HIV. The complications of poor nutrition are distressing and may be life-threatening. There are numerous challenges to ensuring good nutrition, particularly within rural communities where Home Based Carers may commonly be working. However, there is a tremendous need for education and counselling for families, close monitoring of children in order that problems are prevented or identified early and finally referral of the child for appropriate management. Home Based Carers can help with all of this! 68 Paediatric Palliative Care Manual for Home Base Carers

72 Module 7: Medicines for Children Module Objectives To discuss the different types of medicines required by children with HIV To explore with trainees the variety of pharmaceutical drugs, local remedies and traditional medicines used for children with HIV To ensure trainees have an understanding of essential considerations involved in the safe delivery of medicines to children To equip trainees with practical ideas to help parents with administration of medicines to their children To demonstrate that trainees have a fundamental role in ensuring children receive the medicines they require in a safe manner, even though direct administration is not within their scope of practice. Slide Presentation: Medicines for Children Medicines for Children Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience in giving medicines to children. Encourage trainees to share their own experiences and parents /carers experiences of giving medicines to children, any difficulties they may have had and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Children with HIV Need to prevent infections Need to treat infections Need to manage symptoms May need to manage side effects of drugs So, they usually need lots of medicines 2. Throughout the course of their infection, children with HIV need a variety of different medicines, all of which are extremely important. Some are medicines which are essential for preventing particular infections and help to keep the child healthy for as long as possible. Others are required to treat the infections themselves or to alleviate suffering through management of symptoms or drug side effects. Paediatric Palliative Care Manual for Home Bases Carers 69

73 Types of Medicines Preventing Infections Bactrim, Vitamins, Immunisations, ARVs Treatment for infections Antibiotics, Antifungals Symptom Management Analgesia, Anti-pyretics, Anti-diarrhoeals, Anti-emetics, 3. Now ask trainees if they can give examples of pharmaceutical medicines used for a) preventing b) treating infections and for c) management of symptoms and side effects. They should see that the classes of drugs used for children are the same as for adults, with which they may be familiar. Management of Side Effects Antihistamine, Anti-diarrhoeals, Anti-emetics Other Types of Medicine Home Remedies? Traditional Medicines? Herbal Remedies? 4. Ask trainees to share their experiences of other types of medicine used in the local communities. It must be stressed that whilst many local medicines are extremely valuable, some are known to interact with pharmaceutical medicines. There is also a risk that use of local medicines may lead to a delay in seeking medical attention in an emergency or where the child s condition is not improving. This manual cannot address the wide variety of traditional remedies - the suitability of individual local remedies and any concerns must be addressed by local specialists. Medicine Chain Prescription Certain medicines can be prescribed by Doctor only Some Professional nurses may prescribe with special training Di spensing Prescription is prepared by a pharmacist Ensure s correct drugs, dosage and timing of dose s is in a labelled container for patient Administering Professional nurses may administer drugs to patient Care givers may only do this under supervision of Profe ssional Nurse 5. It is essential that trainees understand the statutory issues surrounding pharmaceutical drugs in order to practice safely and within their scope of practice. The medicine chain describes who is trained and covered by law to prescribe, dispense and administer pharmaceutical medicines. This serves to protect the patient from being given medicines by people who have not be trained to do so. Scope of Practice Your scope of practice means you will not usually be administering pharmaceutical medicines, but you have a vital role! Children MUST get the medicines they are prescribed If they don t they can t work! Check the child has access to and is getting the drugs Assess whether carer knows how to give them correctly Refer any concerns to the Professional Nurse Ensure any side effects are reported immediately Reinforce the importance of completing the course to the carer Support the carer in giving the medicines 6. Review the trainees scope of practice with them. Whilst most Home Based Carers will not be trained to administer medicines, they can still play a vital role in ensuring that children receive the medicines prescribed. When visiting homes, Home Based Carers are in a position to assess whether medicines have been collected from the pharmacy or are being given to the child. Are they actually being given? Have they run out? Is the parent/carer having any difficulties giving the medicines? Any side effects? Any concerns can then be referred to the professional nurse. 70 Paediatric Palliative Care Manual for Home Base Carers

74 Medicines which are not used correctly can be dangerous The sale, prescription and dispensing of medicines is controlled by law All medicines which are sold to the public must be tested and registered with the Medicines Control Council Caution 7. All medicines are heavily investigated to ensure that they are safe before being given to the general public. Every medicine is different, having very strict instructions as to how it should be used. If these instructions are not adhered to, this could be extremely dangerous. For this reason, the sale, prescription and dispensing of medicines is controlled by law. Only those medicines registered with the Medicines Control Council can be considered safe, if used as instructed. Medicines Control Council Schedule 1 and 2 Aspirin, Vitamins, Milk of Magnesia Can be bought at supermarkets and cafes Schedule 3 Can only be bought by an adult from a pharmacy Schedule 4 Can only be obtained on the prescription of a doctor from a pharmacy Schedule 5,6 and 7 Must be prescribed by a doctor, dispensed by a pharmacist and prescription renewed every time (Department of Health,1997) 8. The Medicines Control Council classifies medicines in 7 different groups, according to the potential harm they may have if used incorrectly. (NB ALL medicines cause harm if used incorrectly). The schedule assigned to a medicine determines how that medicine may be obtained. For example, Schedule 1 drugs may be bought at supermarkets (e.g. Aspirin) whilst access to Schedule 5, 6 & 7 drugs (e.g. morphine) is heavily controlled. Side Effects Be aware of the more common side effects of medicines You need to be able to: Recognise them if a child experiences them Refer the child for appropriate management Teach the carer about common side effects of the medicines Teach her when to seek advice Ensure the side effects have been managed appropriately Refer again if they have not 9. Every medicine has a long list of known side effects. Many of these are extremely rare whilst others may be more common. If a child experiences side effects, these must be identified and managed as early as possible in order to prevent distress, harm or parental/child reluctance to continue with the drug when it is actually safe to do so. Home Based Carers can play a vital role in prompt identification and management if they are aware of some common side effects of a child s drugs. Medicines are all marked with a date They MUST be used before that time or they may be harmful or of no use Expiry Date 04Jul If a child is given a medicine that has passed its expiry date, then the drug may be of no use or may be harmful to the child. Trainees should be checking that families are only using drugs that are in date. The risk of families using expired drugs increases where medicines have not been completed and are stored for future use. Paediatric Palliative Care Manual for Home Bases Carers 71

75 Adherence If the medicines are to work, they must be taken All medicines must be taken in exactly the way they have been prescribed This is known as adherence You have a vital role in assessing: Assessing whether the child is adherent to the medication Identifying any causes of non-adherence Supporting the carer Referring any concerns 11. If a medicine is to work properly, it must be taken exactly as instructed. This means the right medicine, in the right way at the right time. This is known as Adherence. It is not sufficient to only ask a carer whether they are giving the medicine. Instead, carers should be asked how much they are giving and how often; are they experiencing any problems giving the medicine to the child. Carers need a great deal of support and any concerns must be referred to the professional nurse for further attention. Causes of Non-adherence A child is dependent on the carer. If the carer: Does not understand the importance of the medicines Does not know which medicines to give to the child and when Does not know how to give the medicines to the child Is unable to remember to give the medicines Does not believe the child should have them Is unable to collect the medicines Is unable to get the child to take the medicines Thinks the child is better now so stops the medicines The child may be non-adherent! 12. Whilst there are some exceptions, most children will only get the medicine they need if it is given by their carer. Therefore it is essential that trainees understand the variety of factors contributing to nonadherence (i.e. the child not receiving the medicine exactly as instructed). If these are understood, the trainee is more able to identify causes of non-adherence, counsel the carer or refer to the professional nurse. The right patient The right medicine The right dose The right route The right time (Department of Health, 1997) 5 Golden Rules 13. These rules apply to all people taking medicine and trainees should be familiar with these. For various reasons, they are even more important when giving medicines to children as will be discussed over the next few slides. These apply to everybody but They are even more important when giving medicines to children! The Right Patient The only person who should receive the medicines prescribed by the doctor, dispensed by the pharmacist and administered by the professional nurse is the child whose name is on the bottle/box/bag 14. As discussed earlier, when any medicine is prescribed, the prescriber has to decide whether it is safe for that person and what is the correct dose for them. Prescribers are trained to do this, making sure only the right medicines are prescribed for the right people. However, they are not able to control that in the home. Home Based Carers are in a position to reinforce with parents/carers that the prescribed medicine should only be given to that child. Many adult drugs are not safe to give to children! 72 Paediatric Palliative Care Manual for Home Base Carers

76 The right medicine If the wrong medicine is given to a child, this could also be very dangerous The wrong medicine may not treat or prevent infection, manage symptoms or side effects Some medicines should not be given to children The child may be allergic to that drug 15. Similarly, if the wrong medicine is given to the child, this could be dangerous. (e.g. the child may be allergic to that drug; it may only be safe for adults; it may interact with other HIV drugs that the child is already taking). Families may have old medicines in the house which they feel may help the child. This too is dangerous for similar reasons but also because a child with HIV may find it very difficult to recover from infections and get sick quite quickly. If the wrong medicine is being given for that infection, the child may deteriorate and it will then be more difficult to treat the infection. The Right Dose Children are much smaller than adults Their bodies have different ways of coping with medicines Drug doses are extremely carefully calculated for children so: Drugs achieve their aim but do not harm the child Doses are calculated by weight (and sometimes height) Children grow quickly so need regular monitoring of weight 16. Drug doses are one of the main differences between medicines for children and those for adults. A child s body processes drugs differently to adults. Prescribers are trained to make sure that the child gets the dose required to produce the desired effect (e.g. treat an infection) without being too much drug for that child to cope with. Children cannot be given adult doses and paediatric doses are prescribed by someone trained to do so. They are calculated by weight and occasionally height. This is a particular difference to adult dosing where, usually, one dose suits all. One child may need a different dose to another child, depending on their age, weight and height. The Dose You MUST give an accurate dose! NEVER guess the amount to give NEVER just pour syrup in to the child s mouth This could be dangerous for the child: - He may get too much medicine - He may get too little medicine 17. Parents often approximate doses, particularly when a child has been prescribed syrups, (e.g. pouring drugs directly in to the child s mouth from the bottle, without measuring the dose). The dose on the medicine s instructions is there for a reason too much medicine may make the child very sick whilst too little medicine may mean the infection or symptoms are not treated. This can also make the child even sicker. Paediatric Palliative Care Manual for Home Bases Carers 73

77 Measuring The Right Dose Different methods may be used to measure accurate doses of syrups or liquids before giving them to the child Droppers Marked Medicine Cap Medicine Cup Syringe Spoon 18. There are a variety of different ways of ensuring that the child receives the correct dose, as listed in the slide. These usually accompany the medicine when it is dispensed. Trainees must ensure that they are familiar with these in order that they may effectively teach the carer. Ideally, have examples of these available in the classroom, plus any other reliable measurement tools used locally. The Right Route Medicines must always be given by the correct route Medicines may be administered in the following ways: By mouth Under the tongue On the skin In to the eye Into the nose In to the rectum By injection By inhalation 19. Medicines are given in different ways. The instructions included with each medicine state how it should be given. If they are given in the wrong way, this could be extremely dangerous or the medicine may not work. Home Based Carers are in a position to check the instructions and ensure that the carer is giving the medicine via the right route. The Right Route The route by which drugs are given to children is extremely important Children do not like medicines May cause trauma and distress to both the child and the carer If the child cannot/will not take the medicines, they cannot work The way medicines are given can have a great impact on a child s quality of life 20. The route by which medicines are given to a child affects their quality of life. Whilst there may not always be a choice (e.g. a medicine must be given intravenously), medicines are generally given orally where possible as they tend to be less traumatic for children. However, even oral medicines can be distressing for many children. Prescribers should be considering the potential trauma to children when deciding which route to give medicines. Medicines By Mouth Most medicines given to a child will normally be given by mouth They come in the form of: Pills and tablets Capsules Suspensions/mixtures Syrup Drops 21. Although oral drugs are increasingly available in child-friendly formulations, many remain difficult for children to take. The size of pills and tablets may make it difficult for some children to swallow them. The enteric-coated capsules are often easier. Syrups are easier for babies and young children but these may not be tolerated well in large volumes. Suspensions may need to be made up in the home and carers must be taught how to do this and made aware of the expiry date. Drops are for eyes, ears, mouth and nose. 74 Paediatric Palliative Care Manual for Home Base Carers

78 Helping the Child Take Medicine If the medicines are to work, the child must be able to swallow them A child may have been dispensed medicine that he cannot swallow This causes unnecessary distress for the child and the carer The child will not get the medicines he needs 22. One of the greatest challenges in ensuring children get the medicine they need is whether they can actually swallow it. Even adults have difficulty swallowing tablets, and they know they have to do it! Occasionally, children may be prescribed inappropriate formulations as the prescriber is used to prescribing for adults. If trainees identify that a child is having difficulties, it is often worth checking whether the drug is available in another form (e.g. syrup). Such a change may transform the whole process of medicine-taking for the child and family and help to ensure he gets the medicines he needs. Giving Medicines to a Child If the medicines are to work, the child needs you to make regular assessments Does he like the taste of the medicine? Is he able to swallow the tablets? Can he tolerate the volume of syrup? 23. Whilst Home Based Carers may not be administering medicines, they are able to make regular contact with the child and family to assess whether there are any difficulties associated with medicine-taking. These may then be referred back to the professional nurse or prescriber. If these issues are not dealt with, the child may not get the medicine he needs, which usually has severe implications. Giving the Medicine Medicine Cups Syringes (1ml, 2.5ml, 5ml, 10ml) Feeding Bottle with a cross Spoon Plastic dropper 24. A number of different implements may be used to administer medicine to children. What is actually used in practice will depend on what is provided by the pharmacy or clinic and what parents find easy to use. The implement used must ensure that the child gets all of the medicine required for that dose. For example, oral syringes are an effective way of delivering the medicine but only if the medicine is not squirted in so quickly that the child vomits; whilst the practice of adding medicines to a feeding bottle can help the child to take the medicine, the bottle may not be finished and it is then impossible to know whether all the medicine was taken. Paediatric Palliative Care Manual for Home Bases Carers 75

79 Giving the Medicine Need to prevent aspiration Hold child in semi-reclining position Place medicine in spoon, plastic cup, plastic dropper, plastic syringe (without needle!) Place medicine along side of infant s tongue Administer slowly Wait for child to swallow 25. Giving medicine to a child can take practice but the key is to take things slowly. People commonly want to get it over and done with, and the medicine is given too quickly. The baby may then choke, inhale the medicine (aspiration) or vomit it straight up. The child should be elevated rather than lying down as this helps to prevent aspiration. Demonstrate to trainees the practice of putting a syringe in to the cheek, alongside the infant s tongue. This gives the child time to swallow the medicine properly rather than it being given straight in to the back of the child s throat. Handy Hints! Some medicines are only available as tablets or capsules Handy Hints for Children! Crush tablet if possible/allowed Mix with jam, porridge Divide tablet if scored Empty capsule and sprinkle contents on jam (only allowed for some drugs!) 26. Although pharmaceutical companies are improving at making child-friendly formulations, some medicines are only available as large tablets or capsules. A few practical measures can help children to swallow their medicines or even enable parents/carers to give it without the child knowing about it. Crushing tablets with the back of a spoon and/or mixing them with a favourite jam can help. Ideally, tablets should only be split if the tablet is scored. Otherwise it can be very difficult to break a tablet exactly in half, meaning the child gets the wrong dose. Capsules can sometimes be emptied out but this MUST be checked with a pharmacy as it may affect the way the drug is absorbed. Talking with the Child Taking Medicines Together Sticker Charts Play Therapy Handy Hints! 27. Whilst giving medicine to a child can sometimes be a big battle, it can often be resolved using simple techniques. The first step should always be to talk with the child as this can help him to understand further (as discussed in Modules 3, 4 & 5). Children who have refused medicine can often be perfectly happy to take it once they have had even very simple explanations. Children also respond well to taking medicines at the same time as another as they are not alone or different. Sticker charts allow the child to reward him self every time he takes medicine, encouraging a sense of control. They can also remind carers what to give and when. Play therapy can also be very powerful. 76 Paediatric Palliative Care Manual for Home Base Carers

80 Nasogastric Administration Oral medications may be given via NG tube Removes distress of giving medicines Does not disturb the child Medicines in liquid form or safe to crush only Risk of clogging the tube Always flush tube with clean water 28. Nasogastric (NG) tubes are a useful method of administering medication by people who have been trained to use them. The child is not disturbed which is particularly valuable for children who are too unwell to be disturbed or to swallow. The major concern with this method is that tubes can easily become blocked if tablets are not crushed finely enough or syrups are too thick. The child will then need a second tube passing which is extremely distressing. NG tubes must be flushed well with clean water. Thick syrups must be given slowly with regular flushes of water. Rectal Administration Useful for children unable to take anything by mouth Sedatives, analgesia, anti-pyretic, anti-emetics, anticonvulsants Often absorbed more quickly and quicker response Faeces may delay absorption Unsuitable for child with diarrhoea 29. Some medication may also be given rectally, providing another useful route when medicines cannot be taken by mouth. Rectal administration is particularly useful for 1) anti-convulsants 2) anti-emetics when the child can not keep anything down and 3) anti-pyretics and analgesia which often work more quickly when given rectally as they are absorbed more quickly than through the stomach. Local policies and availability of rectal preparations will determine whether these are an option. Eyes, Ears & Nose Not usually painful but drugs can cause unpleasant sensation Usually distressing for a child Difficult for carer to gain child s cooperation Infant and young child need to immobilise head Older child needs explanation and direction The Right Time Medicines must be given at the right time or they will not be effective Medicines may be ordered 4 hourly (06h00, 10h00, 14h00, 18h00, 22h00) 6 hourly (06h00, 12h00, 18h00, 24h00) Daily (in the morning, after breakfast) Every evening (at bed time) Three times a day (usually after meals) Twice a day (after breakfast and supper) Medicines must never be given more often than prescribed as this could be dangerous for the child 30. Infections of the eyes, ears and nose commonly require topical drops or ointments. These can be distressing for the child and parent and the child commonly needs to be held in order that they may be administered. The ideal is to give the drug whilst causing minimum distress to the child but this can be difficult! Two people make life easier as one can hold the head whilst the other administers the medicine. Explanations can help older children understand and they may then be more cooperative. 31. Every medicine comes with instructions as to when it should be given. These MUST be adhered to if the medicine is to work. Giving the medicine too soon may be dangerous as it is too close to the previous dose. Giving the medicine too late or missing doses means there will be a period of time when the body is missing that medicine so it may not help the child to get better. Paediatric Palliative Care Manual for Home Bases Carers 77

81 The Right Time Note! Some drugs must be taken on an empty stomach or with food These instructions MUST be adhered to Otherwise the drugs will not work or may be harmful to the child The importance of this must be explained to the carer This can cause difficulties for carers when children want to eat / do not want to eat 32. The instructions are extremely important if the medicines are to work. However, parents/carers may need help in understanding the instructions. Different drugs may have different instructions and this can become confusing (e.g. one may be twice a day on an empty stomach, another may be three times a day). Dietary instructions can be very challenging for parents as babies and children tend to want to feed or eat when they are hungry waiting may be difficult! Summary Working within your scope of practice, you are not usually involved in administering of medicine But You have a vital role in ensuring the children are receiving their medicine, safely and accurately and that any problems are referred 33. The scope of practice of the trainees means they will not usually be involved in direct administration of medicines. However, children with HIV require a lot of medicines and it is extremely important that they get these safely and properly. Trainees may be able to support families, assess any difficulties that the child and family may be having and can then refer any concerns. In this way, they can play a vital role in ensuring children receive the medication which may help to prevent them from getting infections, recover from infections or benefit from symptom management. 78 Paediatric Palliative Care Manual for Home Base Carers

82 Module 8: Pain Module Objectives To demonstrate that children with HIV are likely to experience pain, both throughout the course of their illness and at the end of life To describe why the assessment and management of pain in children is different to that of adults To equip trainees with the knowledge and skills to assess and refer children in pain To provide an overview of the management of pain in children To demonstrate the importance of the Home Based Carer in effective management of children in pain Slide Presentation: Pain Pain Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grants Scheme 1. Welcome trainees and introduce your self. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of assessing and managing pain in children, how they have managed it and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. HIV/AIDS affects every dimension of a person s life and causes not only physical pain but social, emotional and spiritual pain as well The same is true in children Total Pain 2. HIV/AIDS is not only a physical condition but a social, psychological and spiritual one too. It places immense strain on every dimension of a person s life. Similarly, pain is not only experienced physically - those infected with HIV suffer from many types of pain as the disease continues to impact on different aspects of their life. This concept of total pain not only applies to adults but to children too. Paediatric Palliative Care Manual for Home Bases Carers 79

83 Pain is one of the most important factors affecting the quality of life of a child with HIV throughout the child s illness It is NOT just experienced at the end of life! Physical Pain in Children with HIV HIV causes pain in two main ways: It directly damages various parts of the body It leads to a wide variety of different infections At various periods during the course of HIV infection, children are likely to experience pain Pain may be mild or severe, acute or chronic 3. Pain and pain control is often associated with end of life care. However, like adults, children with HIV experience episodes of pain throughout their illness. Pain is often one of the most significant factors impacting on the quality of life of a child with HIV. An understanding of the way children perceive and experience pain and an ability to assess and manage pain within their scope of practice is vital if trainees are to deliver compassionate, effective palliative care to children with HIV. Whilst Modules 2, 3 & 4 have already addressed social and psychological issues, this module will now focus on the assessment and management of physical pain in children with HIV. 4. Children with HIV experience physical pain for two main reasons. Firstly, HIV causes direct damage to various parts of the body. Secondly, HIV leads to opportunistic infections and associated symptoms, of which pain is extremely common. So as stated previously, children are likely to experience periods of pain throughout the course of their illness and not only at the end of life. The severity and duration of pain experienced varies greatly. Causes of Physical Pain Procedures Skin Breakdown Skin Infections Diarrhoea Abdominal Pain Sores/Abscesses Headaches Limb pain Joint pain Oral infections Nerve Pain 5. The causes of physical pain in children with HIV are extremely varied, yet the result is the same. Ask trainees to name some potential causes of pain. The pictures are just a few examples: an abscess in the neck (left), oral thrush (top right) and shingles (bottom). Medical procedures such as blood tests, dressing changes and injections may be very painful and are often required throughout their illness. Infections involving any part of the body may be responsible for pain (e.g. Neurological, Gastrointestinal and Respiratory systems) 80 Paediatric Palliative Care Manual for Home Base Carers

84 An adult Will tell you he is in pain Can describe the pain Can locate the pain Can tell you how severe it is Pain in Children A child May be unable to talk May be unable to express himself verbally May find it difficult to describe or locate pain May be afraid to tell you It just hurts 6. Ask trainees how the assessment of pain in children differs from that of adults. How do they know an adult is in pain? How do they know a child is in pain? Compare and contrast the two tables in which it is demonstrated that an adult not only has the ability to inform others that he has pain but is usually able to describe and locate the pain. In contrast, a child may be unable to talk or express clearly that he is in pain, let alone describe or locate it. A common response to asking a child to locate the pain is that it just hurts. A child often knows it hurts but is unable to describe more than that. Who is in Pain? 7. Ask trainees to identify which of these three children is in pain and then to explain why. It is commonly stated that a) the child on the right is not in pain because he is smiling and happy - True. b) the child on the bottom left is in pain because he is crying True, crying is his way of expressing pain c) the child on the top left is not in pain because he is lying quietly, contently False! Children in pain do not always cry out and often prefer to lie quietly, undisturbed. Crying or movement makes pain worse so children withdraw from the world. These children s pain is often neglected. This will be discussed further. Children and Pain Children s nervous systems do perceive pain Children do experience pain Children do remember pain Children are not more easily addicted to morphine 8. It is believed by some that children do not feel pain. Ask trainees for their views and discuss this. It should be stressed that children s nervous systems perceive pain in the same way as adults. Importantly, not only do children experience pain but they remember it. A painful experience will make a deep impression on a child and the event will be remembered, often for many years! Paediatric Palliative Care Manual for Home Bases Carers 81

85 Children and Pain All Children are different! Experience of pain may depend on: Developmental stage Past experience of pain Fear/Anticipation of pain Sense of control Understanding of events Emotional and physical condition of child and carer Pain is what the child says it is! 9. The way a child will experience pain or a painful event cannot easily be predicted. All children are different. Factors influencing the child s experience are varied. Their developmental stage (not their actual age) is important. Past experiences of pain may enhance the pain (unless it was managed well in the past which may help to reduce pain). Loss of control tends to enhance pain whilst an understanding of events (e.g. why the blood test is required) tends to reduce pain. If the child or carer is fragile, physically and emotionally weak, pain may be far worse. Above all, those caring for children must respect and understand that if the child says he is in pain, he is in pain! Preventing Pain Children should not suffer with pain! This is possible in the majority of cases, through the ability to: Understand how children experience pain Anticipate when pain may occur Recognise a child in pain Assess the nature, severity and potential cause of the pain Take prompt, appropriate action to alleviate pain Monitor the child to ensure pain is alleviated All of this may be achieved within your scope of practice! 10. Preventing pain from occurring in the first place is often possible but requires skills in understanding children and anticipating potentially painful events. Pain prevention strategies may then be implemented, thus enhancing a child s quality of life (e.g. teaching carers that giving Paracetamol to a child with oral thrush 30mins before mealtimes may help to reduce pain on eating). When pain is anticipated, children need referring for analgesia (e.g. shingles is known to cause extreme pain and a child who is developing shingles should be referred for analgesia as soon as possible). Skills in recognising and assessing a child in pain can be used to help prevent existing pain from progressing further. Pain prevention strategies must then be monitored for their effectiveness. Assessing Pain: Posture A child in pain will hold themselves very tightly Curled up, foetal position Movement makes the pain worse A child who is comfortable will sleep in a more relaxed and open position May move all but part of body in pain (arm/leg) 11. A child with no pain will lie, sit and run openly and freely. However, children in pain tend to protect or guard the area which hurts. They may lie in a foetal position and avoid movement of the area which causes them pain. Observing the child s posture often provides useful signs that the child is not comfortable, even though he has not expressed this verbally or vocally. Pearce, Paediatric Palliative Care Manual for Home Base Carers

86 Assessing Pain: Behaviour Child in pain will remain distressed or upset after the wet nappy is changed and they have been fed May be hard to console May get worse when held and moved Pearce, A distressed child often needs a nappy changing, is hungry or just wants to be held. However, if all these have been tried and the child remains distressed and difficult to console, this is an indication that the child may be in pain. In fact, attempting to console the child may even make him more distressed. This can be distressing not only for the child but also for the carer. Assessing Pain: Interaction Child in pain will be less likely to focus on the carer Will not maintain eye contact May be withdrawn Much less likely to have smile in response to the carer s voice Ask the carer if they have noticed any change in the child 13. The child s level of interaction is a useful indicator of pain. Most contented children will respond positively to their carer yet a child in pain may not. Limited interaction, signs of withdrawal or lack of eye contact are often signs that the child is distressed with pain. The carer is often the one to identify pain in their child as they observe the child is not interacting or behaving in his/her usual way. Pearce, Assessing Pain: Vital Signs Fast Breathing Fast Heart Rate Low Blood pressure Whilst the child is at rest And/or There is no other identified cause May be signs of pain and distress 14. If a child is resting and there is no other obvious cause, breathing quickly (tachpnoea), an elevated heart rate (tachycardia) or low blood pressure (hypotension), may suggest that the child is in pain. For example, a child with fast breathing and no signs of respiratory infection may be in pain and distress. Pearce, Assessing Pain: Ability to Play Children love and need to play A child in pain may continue to play with mild-moderate pain But observe them whilst they play How easy it is for them to play? Pearce, Observing children at play can provide an indication of the child s level of pain. Never assume a child at play has no pain as some children will continue to play with mildmoderate pain. However, their mobility and ease whilst playing may be reduced (e.g. they may be guarding one part of their body or not moving about so freely). Assessment of the child s ability to play not only gives an indication of pain levels but also the way in which the child is coping with the pain. Paediatric Palliative Care Manual for Home Bases Carers 83

87 Assessing Pain: Involve the Child All too often we think we know better than the child But, only the child can tell you: How he is feeling What he can tolerate What would make him feel better Involving the child and giving them a sense of control helps them to cope better with pain and distress 16. Observation of the child provides a great deal of useful information in the assessment of pain but the only true way to assess pain, its severity and how it is affecting the child, is by asking the child himself. Pain is what the child says it is! Remember children sometimes deny that they are in pain as they are fearful of medicines and injections. Children need to be informed of the ways in which pain may be resolved (e.g. syrups, no injections!) and to trust the person telling them. Assessing Pain: Involve the Child Body Charts Face Scale Numeric Scales Diaries Colour Tools 17. However, as discussed earlier, children may find it very difficult to describe the pain they are experiencing. There are a variety of tools which can be used to help children express pain as it means to them (see Appendix iv: Pain Rating Scales for Children) These do require a little creative thought and time but this commitment to involving the child can improve assessment and management of the child s pain. Acute and Chronic Pain Acute Sudden onset Mild, moderate, severe Short duration Usually express pain verbally or through vocalizations (cries, scream) Chronic Long duration Mild, moderate, severe May appear quiet, withdrawn, lack interest in activities or surroundings, reluctant to move, more clingy, difficulty sleeping 18. Pain can be considered in two different categories - acute and chronic. This is essential for understanding the nature of children s pain, and ensuring appropriate assessment and management. The two tables demonstrate that acute pain and chronic pain are different in the way they occur. Acute pain occurs suddenly and has a short duration (e.g. blood test) whilst chronic pain has long duration (e.g. shingles rash). Both can range in severity (e.g. a blood test and a lumbar puncture may both cause acute pain but differ in severity). The way children express acute and chronic pain also differs. Assessing Pain Think about the possibility of pain Consider how the child may express pain Observe the Child Talk to the Child Listen to the Child Use pain assessment tools Use the child s own language (hurt, sore) Talk to the carer Listen to the carer 19. So assessment of pain in children involves a number of different factors. Firstly, an awareness of what may cause a child pain and how he may express that pain is important. Secondly, observing the child (e.g. behaviour, posture, interaction and ability to play) are important in pain assessment. Thirdly, most importantly, the child must be involved. It is their pain and only they can tell us how they are feeling and how it is affecting them. Finally, the carer not only needs a great deal of support as a child in pain will be extremely distressing, but they are able to provide essential information about whether the child has been in pain and how he is coping with it. 84 Paediatric Palliative Care Manual for Home Base Carers

88 Principles of Pain Management Treat underlying cause of pain If possible Plan Ahead: Don t wait for pain to start or get worse! Unnecessary distress for child and carers Harder to get pain under control once it has started If pain is not controlled then children may demand more medication than is needed to be sure they will have their pain controlled Loss of trust between child and carer Consider and assess factors contributing to pain Developmental stage, Understanding of events, Sense of control Past experience of pain, emotional & physical condition 20. The slide shows the first three of six principles of pain management. 1) Management must begin with the treatment of any underlying cause. This will not always be possible but trainees have a crucial role in referring children (e.g. referring a child in pain for treatment of oral thrush). 2) Planning transforms the management of pain (e.g. ensuring the parent has Paracetamol in the house and has been taught how and when to give it). 3) Remember every child is different and various factors will influence how individual children experience pain. Principles of Pain Management Use pharmaceutical AND non-pharmaceutical methods Distraction therapy Use the least distressing route of administering medicine Involve the carer Knows the child best Need lots of support Discuss management of pain with them Give regular medication (by the clock) Pain is managed much more effectively Child does not experience so much pain Builds trust 21. The slide shows the second three of six principles of pain management in children. 1) Use of pharmaceutical methods alone denies the child the potentially enormous benefits of non-pharmaceutical methods. 2) Carers provide essential information and must be involved (e.g. they may know what seems to alleviate the child s pain most or what the child appears to be able to tolerate/not tolerate). They need to know how to give the medication and where to refer to if it is not helping. 3) Regular administration of medication is essential for effective pain control. If one dose is given it may control pain for a period of time but the pain will return. Giving medication regularly until it has finally resolved means the pain will be kept under control for the duration. Non-Pharmaceutical Approaches A child s work is to play! A child is happiest when playing Play can distract the child from pain Play can be used by children of all ages, even when they are too weak to get up 22. There are powerful ways to help reduce the pain a child experiences which do not involve pharmaceutical drugs. Distraction therapy involves anything that occupies the child s mind from the pain they are experiencing. Examples include the use of play, story telling, reading, singing, playing instruments, and painting. Using such methods, children with mild-moderate pain can be distracted for periods of time. The pain may not be resolved but its severity may be reduced and the child s ability to cope enhanced. Clearly, some children may be in too much pain or be too weak or sick for such activities but they should be given the opportunity to decide for themselves. Paediatric Palliative Care Manual for Home Bases Carers 85

89 Pain is managed using an analgesic ladder If pain is not managed at one stage, treatment must move to the next step! Stage 1: Mild Pain Stage 2: Moderate Pain Stage 3: Severe Pain WHO, 1998) Managing Pain Stage 1: Mild Pain Give a dose of paracetamol (Panado) for pain relief Available as tablets, syrups, solution, suppositories Tastes OK Safe doses for pain can be slightly higher than fever Repeat every 6 hours if pain persists Teach the carer how to measure the correct dose and administer the medicine Within your scope of practice! Stage 2: Moderate Pain Children with HIV may well have pain that is not controlled by paracetamol alone. Move to Stage 2 management Start treating the child with regular (not prn) paracetamol In older children, half a paracetamol tablet can replace 10 ml syrup If the pain is not controlled, add regular (not prn) codeine Start codeine on the lower dose, gradually increasing depending on the child s response, to the maximum dose Within your scope of practice! 23. The World Health Organisation (1998) Analgesic Ladder considers pain in three stages, increasing from mild pain through to moderate and then on to severe pain. Recommendations are made for management of pain at each stage and if these are not sufficient, the individual moves to the next stage and is managed accordingly. Although more flexible approaches are often used by prescribers who have been trained and who have a range of drug options available, this ladder provides a useful framework for Home Based Care. IMCI (2002) guidelines for Pain Management are also based on this ladder and will be used here for the purposes of training Home Based Carers. However, it is recognised that individual teams will have local policies in place and the training will need to be adapted accordingly. 24. As for IMCI (2002), Stage 1 recommendations are for Mild Pain, in which Paracetamol alone is used. The advantages of this drug are not only its effectiveness and safety but its availability as tablets, syrups, solution or suppositories. Whichever the child tolerates best or is available can be used. The scope of practice of the trainee will dictate whether they are able to actually administer the Paracetamol or not. However, parents should have been taught previously by a professional nurse or dispenser how to measure doses and administer this safely. For chronic pain, repeat the paracetamol every 6 hours in order to maintain pain control. 25. Where Stage 1 (paracetamol alone) is not controlling pain adequately then Stage 2 recommendations for Moderate Pain must be applied. Children with HIV will commonly require this management as the severity of pain is commonly beyond Stage 1. Paracetamol is given regularly, every 4-6 hours but no more than 4 times a day. If this does not control the pain, then regular codeine is given in addition to the paracetamol. This needs to be prescribed and the Home Based Care team will need to have referred the child for this where Paracetamol is not proving effective. Carers will need to have been taught how much codeine to give and how often. If the Paracetamol and Codeine doses are staggered (i.e. both given 6 hourly but alternating) then there will always be crossover of the pain relief. 86 Paediatric Palliative Care Manual for Home Base Carers

90 Pharmaceutical Approaches Weight 2 - <3kg 3 - <5kg 5- <8kg 8-<12kg 12-<16kg 16-<20kg IMCI, 2002) Age (only if you do not know the weight Under 2 mths 2 to 6 mths 6 to 12 mths 1 to 3 Years 3 to 4 Years Over 4 Years Pain Stage 1 Paracetamol 6 hourly 2 ml 2.5 ml 5 ml 7.5 ml 10 ml 12.5 ml Pain Stage 2 Add Codeine Phosphate syrup (25mg/5ml 6 hrly) Initial Dose Maximum 0.2 ml 0.3 ml 0.5 ml 1.0 ml 1.5 ml 2 ml Next Step! Children with severe pain may require more than paracetamol and Codeine Morphine is a very effective drug but must be managed extremely carefully by professional nurses and doctors It may be given orally or intravenously Side Effects of Morphine & Codeine 1.0 ml 2.0 ml Constipation Should be addressed by doctor/professional nurse before it occurs with stool softeners or laxatives Itching Can be quite distressing, particularly for a child May require antihistamine and/or topical relief Refer itching for appropriate treatment and management Sedation Some patients may benefit from sedative effects May be reduced with some medication if desired Carers must be warned of sedative effects and supported 3 ml 5 ml 6 ml 8 ml 26. This table is taken from IMCI (2002) guidelines. It sets out doses for children according to age or weight at Stage 1 and Stage 2. Only those trained to administer these drugs should be doing so, in line with their scope of practice. This table is included here in recognition that some trainees may have been trained to administer medication. Ideally, weight should be used for calculating doses yet in practice this is commonly not possible and age may be used. Note that codeine doses have a lower and upper range and this will be adjusted by the prescriber according to its effectiveness. NB Prescribers may choose to add adjuvant drugs at Stage 2 but this is at the discretion of the individual prescriber, local policy and available drug choices. This is not included in IMCI. 27. Where pain is not controlled at Stage 2, the next step on the ladder is Stage 3 for Severe Pain. A strong opioid (e.g. morphine) is used. Children who are not being adequately managed on paracetamol and codeine (in addition to any other drugs that may have been prescribed) should be referred for further management. Again, morphine can only be prescribed by those trained to do so. It can be given orally or IV depending on the severity of pain and the child s ability to tolerate oral medication. Children requiring morphine are often in an overall condition which demands more intensive care and support. A decision will need to be made by the professional team and family with regard to how best to meet the needs of the child/ family. 28. Unfortunately, whilst morphine and codeine can be extremely effective in the management of pain, they are also commonly associated with side effects. These too need managing if symptoms are to be alleviated and suffering reduced. Constipation, itching and sedation may cause great distress to the child and family and Home Based Carers can play a vital role in supporting the child and family and making a referral for appropriate management. Paediatric Palliative Care Manual for Home Bases Carers 87

91 Giving Medicine to Children Remember the 5 Golden Rules: The Right Child The Right Medicine The Right Dose The Right Route The Right Time Monitoring Any child in pain and requiring pain management must be monitored very closely Has the pain been alleviated? Has the pain increased? Has the child s overall condition deteriorated? Is the care giver coping? Is the care giver managing to give the analgesia? Does the child require referral for further treatment? Is the child experiencing any side effects to the medication? Summary Children with HIV are very likely to experience pain Both during the course of their illness and at the end of life Whilst it is not usually within your scope of practice to administer medicines, you have a vital role to play in: Preventing, recognising and Managing pain Doing everything possible to ensuring the child is comfortable and not distressed Ensuring the carer is supported 29. Drawing on the issues discussed in Module 7: Medicines for Children, ask trainees to describe what is meant by the 5 Golden Rules for giving medicines. Medication used for pain management in children can be extremely dangerous if not used properly. The prescribed medicines should only be given to the child, in the right doses, in the right way and at the right time. These will all be written clearly on the instructions for the individual drug. Carers may need a great deal of support however if they are to understand and ensure that these instructions are adhered to. 30. Effective pain management relies on monitoring of the child. It is not sufficient to know that medication has been taken by the child. Home Based Carers are commonly the only contact a family has with health services. If a medication that has been prescribed has not been effective and the child continues to be in pain or the child is experiencing side effects or the carer is struggling to cope, this can only be identified through follow up of the child. Referrals can then be made accordingly in order to ensure new strategies are implemented to control pain. 31. Ask trainees to summarise what they have learnt from this module and how it may help them in addressing pain in children. As summarised on the slide, children with HIV have an extremely high risk of experiencing pain throughout their illness. Trainees have a vital role within their scope of practice of assessing pain by understanding how children perceive, experience and express pain. They may then refer children for pain management and support the child and family in the home to ensure it is being managed effectively. In this way, trainees will have an enormous impact on the quality of life for the child and family. 88 Paediatric Palliative Care Manual for Home Base Carers

92 Module 9: Skin Problems Module Objectives To review the most common types of skin problem experienced by children with HIV To equip trainees with an understanding of potential complications of skin problems in children with HIV To review the treatment and management of skin problems To demonstrate that trainees have a vital role to play in preventing and managing skin problems through education, assessment, management and referral Slide Presentation: Skin Problems Skin Problems Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of caring for children with skin problems, how they have managed them and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Skin Problems Common in children with HIV Often conditions common in all children but more severe Often first sign of HIV infection / HIV disease progressing Include: Rashes Slow Healing Itchy skin Boils or abscesses Painful sores Drug reactions Dry skin 2. Skin problems are common in children with HIV, many of which are conditions seen in uninfected children. Yet in HIV-positive children, these are usually more severe, more prolonged and more difficult to treat. The risk of developing skin problems increases as disease progresses and the immune system weakens. They are therefore a sign that disease may be advancing. They may often be the first indication of HIV disease. Signs and symptoms vary greatly. Paediatric Palliative Care Manual for Home Bases Carers 89

93 Issues for a Child Hygiene dependent on carer Pick up infections Distressing symptoms Secondary infections (scratching, picking) May infect others Increased risk of skin infections as HIV disease progresses 3. Children are more susceptible to skin infections than adults they are dependent on the carer for ensuring good hygiene (e.g. bathing, hand washing). As children develop, they explore and are unaware of unhygienic practices they will play with anything! The symptoms of skin infections can be particularly distressing, particularly for children. They do not understand the risks of scratching and picking sores and children s skin problems tend to become secondarily infected, particularly as children s nails may not be clean. In the case of contagious skin problems, play mates or carers may also be infected. The risk of children acquiring skin problems increases with disease progression. Preventing Skin Problems Daily washing with soap and water Dry skin well Moisturise skin Wash nappies and clothes regularly Keep Nails short and clean Expose skin to sun and air when possible 4. Prevention is better than cure. All children, but particularly those with HIV, should be washed daily with soap and water to remove germs from the body which may lead to skin infection. Dry skin may crack and breakdown which allows germs to enter. This may be prevented through thorough drying and the use of moisturisers. Nappies and clothes need to be washed regularly otherwise these will harbour infection. Nails are a perfect breeding site for germs and nails should be kept short and clean. Sunlight and fresh air is extremely important for the maintenance of healthy skin and can help to prevent infections thrive on damp, dirty conditions. Thrush Extremely common in children with HIV Caused by Candida infection Commonly found in nappy area or skin folds May be painful for a child May lead to secondary infection 5. Ask trainees to describe what they see in the picture and what they think is the cause. The bright pink skin in the fold of this baby s neck is due to candidiasis or thrush. It is extremely common in children with HIV. It is caused by the same fungus which causes oral thrush, Candida albicans. It is most commonly found in the nappy area or skin folds, is a vivid pink/red rash with a clearly demarcated border. It may be painful for the child and may become secondarily infected. 90 Paediatric Palliative Care Manual for Home Base Carers

94 Expose skin to sun and air Clean area with water Gentian Violet or Nystatin Pain relief (Paracetamol) Managing Thrush Wash nappies and clothes well Refer for medication if no improvement 6. Ask trainees how they would manage thrush. The skin must be kept clean and dry and ideally exposed to the sun and air. Covering the thrush with nappies and clothes will not help and may even make the thrush worse. Gentian Violet or Clotrimazole ointment should be applied until the rash resolves. Nappies and clothes must be washed and dried well to prevent reinfection. If the thrush does not improve, the child should be referred for oral medication. Pain may be helped with regular Paracetamol. Seborrhoeic dermatitis Infection/ Inflammation of the skin Highly suggestive of HIV infection Thick, yellow scales on scalp, face, nappy area, behind ears May be itchy and sore May become secondarily infected 7. Ask trainees to describe what they see in the picture. The child has seborrhoeic dermatitis which occurs frequently in children with HIV. It is usually more severe than seen in uninfected children and is highly suggestive of HIV infection. Thick, yellow scales occur on the scalp, face, nappy area and behind the ears. It may be very distressing for children and scratching may lead to secondary infection of the dermatitis. Managing Seborrhoeic Dermatitis Ensure child has clean, short nails Wash skin using aqueous cream Moisturise skin Pain relief (Paracetamol) Refer for Chlorpheniramine maleate Refer as antibiotics or steroids may be required 8. Management involves hydrating the skin, symptom relief and preventing secondary infections. Parents/carers should be taught and encouraged to moisturise the child as often as possible which helps the skin to heal and prevents breakdown. Short, clean nails are essential to minimise the chance of secondary infection and skin damage during scratching. Paracetamol and Chlorpheniramine maleate can be very effective at relieving symptoms. Parents should be warned that Chlorpheniramine maleate may make the child sleepy. The child should be referred where skin is infected or there is no improvement with the above measures. Paediatric Palliative Care Manual for Home Bases Carers 91

95 Tinea Infections Known as Ringworm Flat, round, scaly, dry patches Commonly found on face, trunk, extremities and head (with loss of hair) May become severe, large, pusfilled patches Common and highly infectious CDC/Dr Georg 9. Ask trainees to describe what they see in the picture and how they would manage it in the community. Tinea (also known as Ringworm) are fungal infections, most of which grow in the form of a ring. They may appear on any part of the body but most commonly on the face, scalp, between the fingers and toes and the trunk. They usually itch and may become secondarily infected. Ringworm is seen in ALL children but is more common and more severe in HIV-infected children. It is highly infectious, and will be passed amongst groups of children in close contact with one another. Management of Ring Worm Wash infected area with soap and water Ensure thorough hand washing Apply Whitfield s Ointment Refer for oral Griseofulvin treatment (1-3 months!) 10. Washing the infected area with soap and water daily may help but children with HIV will probably need more than this. Clotrimazole cream should be used if available. Whitfield s ointment is cheaper, although less effective. Parents must be informed that the ointment will need to be applied for some time before the ringworm will improve. Oral Griseofulvin is the ideal but needs to be taken for 2-3 months! Thorough hand washing is essential to prevent ringworm from spreading. Dry Skin and Itching Extremely common in children with HIV May be very distressing to child May lead to skin infections Avoid use of soaps Bath child in bath oils Moisturise skin with emulsifying ointments in stead Keep child s nails clean and short 11. Children with HIV commonly get dry, itchy skin. This is not fully understood but may be due to an inflammatory reaction to HIV itself. Symptoms of pruritis (itching) are not only distressing to the child but result in scratching. Dry skin easily becomes cracked. Both result in infections. The child needs regular moisturising and bathing in bath oils. Avoidance of soaps can help to prevent drying out the skin. Local creams may have been found to be effective in alleviating symptoms. As discussed earlier, the child s nails should be short and clean to prevent infections whilst scratching. 92 Paediatric Palliative Care Manual for Home Base Carers

96 Chicken Pox Caused by Varicella Zoster virus Rash, developing to crusts Found all over body, particularly on trunk Commonly itchy and painful Highly contagious (spread by contact with sores and secretions) Much more severe than usual chicken pox CDC/J.D. Millar 12. Ask trainees to describe what they see in the picture. Like all children, HIV-infected children can get chicken pox. Caused by the Varicella Zoster Virus, it is characterised by a vesicular rash all over the body. The vesicles then develop in to crusts. It is commonly extremely itchy and painful. Chickenpox can be very severe indeed in HIV infected children and has dangerous complications which will be discussed. Both the sores themselves and secretions (e.g. coughing, saliva) are highly contagious and this poses a great risk to other vulnerable people in the household (e.g. young babies, elderly, pregnant women and HIV positive people. Managing Chickenpox Pain relief Thorough hand washing Keep child away from young, sick, or elderly people Acyclovir treatment Symptom relief with Chlorpheniramine maleate, Calamine Wash clothes well Antibiotic treatment if infected 13. Symptom relief and infection control are central to managing a child with chickenpox. Paracetamol, Chlorpheniramine maleate and Calamine are usually effective although stronger analgesia and sedation may be required in severe cases. Local topical remedies may also have been shown to have soothing effects. Infection control must be taught to parents/carers, particularly where vulnerable people are in contact with the child. Ideally, the child should not be in contact with these people. HIV-negative children are not usually treated for chickenpox but HIV-positive children require Acyclovir due to their immune suppression and the severity of the chickenpox. Children with secondary infections will require antibiotics. Complications of Chicken pox Complications may occur Secondary bacterial infections Haemorrhagic chickenpox Pneumonia Encephalitis Refer to Clinic/Hospital depending on presence of danger signs 14. In extremely severe cases of chickenpox, complications of chickenpox may occur. Any child with Danger Signs as discussed in Module 15: Danger Signs, must be referred to a clinic or hospital immediately. Paediatric Palliative Care Manual for Home Bases Carers 93

97 Shingles (Herpes Zoster) Child has had chicken pox before If immune system weakens, the chicken pox virus returns a s shingles Extremely painful blisters, in cluster or line along the line of a nerve Usually down leg, arm, neck, chest, face, may involve eye Suggestive of HIV in a child Management of Shingles Analgesia (Paracetamol, Codeine) Oral/IV acyclovir Isolate child from sick, young, elderly Hand washing For itch: Calamine, Chlorpheniramine maleate If infected: Antibiotic treatment (Amoxycillin / Flucloxacillin Scabies Common in all children Very itchy bumps all over body Caused by tiny mites which tunnel under the skin Commonly between fingers and toes, in wrist-folds, around waist, on genitals, palms & soles of feet Scratching causes infection, producing sores with pus Symptom relief with Calamine, Chlorpheniramine maleate 15. Ask trainees to describe what they see in the picture and what causes it. Both pictures show children with shingles, having vesicular rashes across the arm (top picture) and chest (bottom picture). Infection with the Varicella Zoster virus most commonly causes chicken pox in children. When the child recovers, the virus stays in the body, remaining dormant in the nerves. If the virus is reactivated at a later date, it can cause shingles which is characterised by painful ulcers along the line of a nerve and do not cross the midline. The virus may be reactivated when the immune system is weakened. Therefore, whilst shingles is not usually seen in HIV-negative children, HIVpositive children who have had chickenpox before can get shingles. Shingles in a child is strongly indicative of HIV. 16. Shingles can be extremely painful and analgesia must be central to its management. Paracetamol should be given regularly and the child may need Codeine in addition. The pain is due to nerve involvement and can therefore be very severe and difficult to treat. The pain can continue after the vesicles have disappeared. Sometimes the child will need medicine called carbamazepine to help this pain. Treatment for shingles is with oral Acyclovir or with IV Acyclovir for children with severe cases or who are unable to take medication by mouth. Infection control is essential as although contact with the vesicles will not cause shingles, it may result in chickenpox. Antibiotics may be required for secondary infections. 17. Scabies is common in all children but occurs often in children with HIV. It is caused by a tiny mite (Sarcoptes scabei). The female burrows under the skin to lay her eggs which hatch into larvae within a few days. A few weeks later, intense itching occurs when the mites are plenty in number! Itchy papules occur, never above the neck. Scabies is passed through close personal contact with infected people. Where a child is itching, trainees should ask whether others in the house are also itching as this usually suggests scabies. Parents/carers must be encouraged to complete the child s medication which is topical benzyl benzoate lotion. Ideally, the whole family should be treated. All clothes and bedding should be washed thoroughly. 94 Paediatric Palliative Care Manual for Home Base Carers

98 Abscesses Children with HIV commonly get absce sses Any child with an abscess must be referred for inve stigation and treatment 18. Ask trainees what they notice about the children in the pictures. Both have large abscesses on the neck (left) and scalp (right). Children with HIV may suffer from recurrent or multiple abscesses and these are suggestive of HIV infection. The abscesses are usually very painful. Children should be referred to the clinic or hospital for further investigation and correct management which may involve antibiotics and/or incision and drainage. This should only ever be done by those trained to do it and use of strict infection control measures is vital. Flesh-coloured, dome-shaped growths Vary in size from 3mm 1cm Often indicate advanced HIV disease Molluscum Commonly occur on the face and can be extremely disfiguring Refer child 19. Molluscum contagiosum is a viral infection. Flesh-coloured or pearly growths occur in different sizes. Whilst these may sometimes itch, children are not usually disturbed by them. However, the growths may become widespread, large in size and extremely disfiguring. Children may be stigmatised against as a result. Molluscum is usually associated with a weak immune system and advancing disease. The child should be referred for appropriate treatment Drug Reactions Children with HIV take lots of drugs A child may react to these drugs: Exfoliating skin rash Fever Severe pain Risk of dehydration and malnutrition More common in infected children: Taking Co-trimoxazle Taking anti-tb therapy Starting ARVs (eg Nevirapine, Abacavir) Refer immediately. 20. Ask trainees to describe what they see in the picture. This child has Stevens- Johnson Syndrome, a severe drug reaction characterised by exfoliating skin and fever. It is extremely painful and the child is at great risk of dehydration. This child had taken medication for TB although other drugs may cause it too. The child needs immediate referral. Drug reactions may not always be this severe but children with any drug reaction need referring for management of the rash and a decision as to whether to stop or continue the drug. This should never be decided in the home but by professionals in the clinic/hospital. Most children can be referred to paediatric outpatients but a child with a rash like that in the picture needs to be referred urgently to hospital as they are seriously ill. Paediatric Palliative Care Manual for Home Bases Carers 95

99 Skin Breakdown Children with HIV are are more likely to get skin breakdown Due to: Malnutrition Immobility Skin infections This can be prevented through: Good nutrition Regular turning and good skin care for immobile, bed ridden children Treatment of skin infections Picture of Skin Breakdown 21. Malnutrition, immobility and skin infections place children with HIV at great risk of skin breakdown which results in pain and/or further infection. Good nutrition plays a major role in keeping skin healthy and preventing breakdown. Parents/carers need teaching about the importance of turning immobile, bed ridden children and preventing pressure sores. Skin infections need treating appropriately as early as possible to prevent further breakdown. Kaposi s Sarcoma Most common type of cancer affecting people with HIV Less common in children than adults but still seen Pink, red, purple or brown/black, painless, lesions May start on face, mouth, gums, palate or penis 22. Ask trainees to describe what they see in the picture. This 4 year old boy has Kaposi s sarcoma. He is very thin and ill, with a widespread rash with purple plaques and spots. He also has a swollen abdomen. Although not as common as seen in adults, children with HIV can get Kaposi s sarcoma. It is a malignancy, characterised by red/purple/brown plaques and spots, often all over the body. Kaposi s sarcoma May lead to skin infections and painful ulcers May spread to: GI tract ( assess for blood in stool or abdominal pain) Lungs (assess for dry, productive cough) Care is usually palliative ARVs may be of benefitt 23. Kaposi s sarcoma plaques may become infected or develop as painful ulcers. It may also affect the internal organs. It has a poor prognosis. Care is usually palliative although there is some evidence that ARVs can be of benefit. A child with Kaposi s sarcoma is at risk of discrimination due to its association with HIV/AIDS. Plaques are usually less obvious on dark skin. Management of Skin Problems Good Hygiene Symptom Relief (Paracetamol, Calamine, Chlorpheniramine maleate) Antibiotic and Antifungal treatment Prevent secondary infections (short nails, Gentian Violet) Treatment for secondary infections 24. Ask trainees to describe the general management of skin problems in children, drawing on the issues raised in this module. Discussion points should include Infection control, Symptom relief, Treatment for the infection itself and Prevention/Management of secondary infections. Trainees are in a position to teach parents/carers how to prevent skin problems, refer children with for appropriate management and support parents/carers, assessing whether symptoms are controlled and the condition improves. 96 Paediatric Palliative Care Manual for Home Base Carers

100 Summary Children with HIV commonly get a wide range of skin problems These can cause intense itching, pain and distress Preventing skin problems through good hygiene and care is extremely important Delaying treatment for skin problems makes treatment more difficult and complications may occur 25. Children with HIV are susceptible to a wide variety of skin problems. Many of these are seen in uninfected children but occur with greater severity and prolonged duration in infected children. Prevention is essential through good nutrition and good hygiene. Parents/carers need to be taught how to ensure this within their home. Symptoms of skin problems may be very distressing to the child and effective symptom control is essential not only for alleviating suffering but for preventing further infections through scratching. Skin problems must be dealt with as soon as possible with appropriate treatment as they may be difficult to treat, damage the immune system further and complications may occur. Paediatric Palliative Care Manual for Home Bases Carers 97

101 Module 10: Oral Problems Module Objectives To review the most common types of oral problem experienced by children with HIV To equip trainees with an understanding of the complications of oral problems in children with HIV To review the treatment and management of oral problems in children To demonstrate that trainees have a vital role to play in preventing oral problems and their complications through education, assessment, management and referral Slide Presentation: Oral Problems Oral Problems Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of caring for children with oral problems, how they would manage them and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Oral Problems Oral problems are common in children with HIV Often a sign that HIV disease is progre ssing Type, frequency and severity of problems depend on the child 2. Children with HIV commonly experience oral problems. Not only are these painful and distressing to the child but they have various complications. Oral problems are more likely to occur as the immune system weakens so they are therefore a sign that disease is progressing. Yet they may often be the first sign of HIV infection. They vary greatly in type, frequency and severity. 98 Paediatric Palliative Care Manual for Home Base Carers

102 Oral problems are commonly painful and distressing for a child A child may refuse to drink or eat Children are therefore at risk of dehydration and/or malnutrition Early diagnosis and treatment is essential to prevent complications Issues 3. Oral problems in children with HIV are a great concern for a number of reasons. They are commonly painful and cause distress. Eating or drinking may be extremely sore or cause a burning sensation. As discussed in Modules 6 & 13, children with HIV are already at risk of malnutrition and dehydration and oral problems further increase this risk. The key to managing oral problems and preventing suffering or complications is early diagnosis and treatment. If trainees are familiar with some of the signs and symptoms of common oral problems and possible complications, they may play a vital role in referring and managing children. Common in children Caused by candida infection White patches on roof of mouth, inside cheeks, back of tongue or throat May be very painful May be in corners of mouth or in throat Oral Thrush 4. Ask trainees what they see in this picture, if they can name this condition, how often they see it and how they would manage it in the home. The child in the picture has a white coating on her tongue and the mucosa of her mouth. She has severe oral thrush (candidiasis). Oral thrush is common in all young babies but less common after 6 months of age. It is very common in HIV infected children and is usually more severe and more difficult to treat than in uninfected babies. It is often associated with severe immune suppression and symptomatic HIV disease. It can sometimes be confused with milk in the mouth but thrush cannot be easily scraped off like milk and there may be bleeding when trying this. Thrush may also be in the oesophagus (the tube from the mouth to the stomach). In this case the child may complain of difficulty swallowing. Pain is distressing for child May be difficult to swallow Oral Thrush Child may not want/ be unable to eat or drink May lead to dehydration and/or malnutrition If severe, recurrent or in throat, suggestive of HIV 5. The picture shows another child with severe oral thrush. Oral thrush can be extremely painful and distressing for the child. The child may find it painful and difficult to swallow and is therefore at risk of becoming dehydrated and malnourished. Children can die quickly from dehydration. A child with HIV may already be malnourished and thrush may make this more severe. Malnutrition will make the child even more susceptible to infections which he may not be able to fight. Severe, recurrent cases of oral thrush or oesophageal thrush are highly suggestive that the child has HIV. Paediatric Palliative Care Manual for Home Bases Carers 99

103 Management of Oral Thrush Wash hands Wet a clean soft cloth with salt water and use to wash child s mouth Refer for: Daktarin oral gel (4-6 hourly x 7-14 days) and /or Nystatin 6 hourly Try both if severe/persistent If N/A, paint with Gentian Violet Avoid feeding for 20 minutes after medication 6. Ask trainees how they are managing oral thrush in their communities. Local remedies are commonly used (e.g. paw paw). Early, appropriate management of thrush is essential if it is to be treated effectively and complications are to be prevented. Hands must be washed before and after contact with the child s mouth as thrush is highly infectious. Salt or bicarbonate of soda solutions help to keep the mouth clean and prevent further infection. Miconazole gel and Clotrimazole suspension is effective but may not be available locally. Gentian Violet is less effective but much cheaper. It should be painted on to the lesions twice daily. It is important that parent/carers are taught to avoid feeding for 20 minutes after medication otherwise the medication will be washed down and be of little help. Management of Oral Thrush If breast fed, check mother s breasts for thrush If thrush present, treat breasts with nystatin or Gentian Violet Advise mother to wash breasts after feeds If bottle fed, change to cup and spoon 7. If a child is breast fed, it is extremely important to check whether the mother has thrush on her breasts. Otherwise, a child who has been treated for thrush may be reinfected during breastfeeding. The thrush may also be painful for the mother and sores may become secondarily infected. Stress to trainees that this is a potential route of HIV transmission too - children whose HIV status is unknown have an increased chance of being infected through breastfeeding if the breasts are infected with thrush. The mother must be treated as soon as possible and be advised to wash breasts after feeds. If only one breast is infected, the other breast should be used for breastfeeding (she should continue to empty the other breast). Feeding bottles may well be harbouring candida so these should be changed to a cup and spoon. Management of Oral Thrush Ensure regular pain relief to relieve discomfort and encourage drinking/eating Encourage small, frequent drinks and food to prevent dehydration & malnutrition 8. As stated earlier, thrush can be extremely painful and regular pain relief should be given not only to reduce suffering but in order to make it easier for the child to eat and drink. Dehydration and malnutrition may be prevented in this way. Pain relief should be given regularly (Paracetamol every 4-6 hours with a maximum of 4 doses in 24 hours), preferably timing doses to be given half an hour before feeds/meals. This can make eating and drinking much less painful for a child. Small frequent sips of drinks and soft food should be encouraged. 100 Paediatric Palliative Care Manual for Home Base Carers

104 Management of Oral Thrush If thrush is no better / worse or swallowing is painful: refer child to clinic for investigations & medication 9. If the child s condition does not improve and/or the child is finding it difficult to eat and drink, the child must be referred for further treatment and investigation. Relapses of severe thrush are common and may need more intensive treatment. It is extremely important that the child gets this. Delaying referral may make the thrush even harder to treat. One major concern with local remedies is that they may not always be sufficient and lead to a delay in seeking drug treatment. If the child finds it difficult to swallow, there may be oesophageal candidiasis although it cannot be seen. The child MUST be referred. Oral fluconazole may be required. Preventing Oral Thrush Thorough washing of bottles, teats, cups, spoons Daily Tooth brushing Breastfeeding Nutritious foods Vitamins 10. Prevention is better than cure. Thrush is very common in children with HIV and there are important steps to preventing it. Trainees have a vital role to play in teaching parents/carers how to prevent thrush occurring in the first place. Feeding bottles are ideal breeding grounds for thrush and MUST be sterilised. In reality, families may not have access to sterilisation fluids and local policies must be encouraged. If sterilisation cannot be guaranteed, feeding with cups should be encouraged instead of bottles and teats, even for young babies. Tooth brushing helps to remove germs which may otherwise cause infection, while nutritious foods, vitamins and breastfeeding all encourage good immune responses. Breastfeeding also avoids use of non-sterile feeding implements. Painful, small blisters or open sores on lips or in mouth May also be around nose May be accompanied by fever Herpes >1 month = AIDS defining condition Herpes Simplex CDC/J.D.Milar 11. Ask trainees to describe what they see and name the condition. Herpes simplex is a virus which causes small blisters or open sores on the lips or in the mouth. Any child may have herpes simplex but it is much more common in HIV-infected children and cases are much more severe and more difficult to treat, as in this picture. In severe cases, the sores may also spread to around the nose. Sores may be accompanied by fever. The sores or blisters are very obvious to others and the child may be stigmatised against. If a child has herpes simplex for longer than one month, this is classed as an AIDS-defining condition. Paediatric Palliative Care Manual for Home Bases Carers 101

105 May be very painful Child may not want/be unable to eat or drink May lead to dehydration or malnutrition May last long time/recur Can be spread from one person to another Herpes Simplex 12. Herpes sores may be very painful indeed. Not only is this distressing for the child but also results in a reluctance to eat or drink. Ask trainees to draw on previous slides and state what their concerns should be. Once again, the child with herpes is at risk of pain, dehydration and malnutrition. Herpes may last a long time in children with HIV and may recur. Herpes is extremely contagious and trainees need to be aware of the importance of educating parents/carers about infection control, especially where other household members are HIV positive. Management of Herpes Paracetemol (Panado) Encourage fluids Hand Washing Soft diet Thorough cleaning of utensils 13. Herpes should be managed in much the same way as oral thrush. Pain relief is particularly important using regular dosing of Paracetamol 4-6 hourly can help to alleviate pain and increase the child s ability to drink and eat. Hand washing is extremely important, particularly where there are young babies, elderly or HIV-positive people living in the house. A soft diet may be easier for the child to eat. Utensils that have been used by the child may well carry herpes virus on them and must be cleaned thoroughly. Management of Herpes Refer for oral Acyclovir May need IV Acyclovir if severe May need antibiotics for secondary infection Child needs clinic/ hospital urgently if: - Child is not drinking - Child is dehydrated - Signs of difficulty breathing, jaundice or behaviour change 14. Whilst HIV negative people may not need medication for herpes simplex, HIVinfected people usually get more severe cases and their immune systems are often too weak to fight it. HIV positive children with herpes must therefore be treated aggressively and need referral for oral Acyclovir. Severe cases may need IV Acyclovir. In some cases, herpes can become secondarily infected and antibiotics will be required. Complications of herpes can be extremely dangerous. As Herpes can spread to the liver, lung or brain the child must be referred immediately if there is jaundice, difficulty breathing or unusual behaviour or fits. 102 Paediatric Palliative Care Manual for Home Base Carers

106 Nutritious Foods Vitamins Hand Washing Preventing Herpes Avoid touching mouth Avoid kissing if herpes present Thorough cleaning of feeding implements and utensils Mouth Ulcers Painful blisters on tongue or in mouth Size 2-3mm to 2-3 cm Occur as single blister or in clusters Occur on roof of mouth, tongue, inner cheek, tonsils Child may be reluctant to eat or drink 15. Like all the infections being discussed, strengthening the immune system can help to prevent cases of herpes and good nutrition and vitamins are extremely important in this. Hand washing is vital if herpes is not to be passed from one person to another. Parents/carers need to be taught this. Touching sores should be avoided although this is difficult to enforce in children. Kissing should certainly be avoided when blisters/sores are present. Again, feeding implements must cleaned thoroughly as they may be harbouring herpes virus. 16. The child s weakened immune system often results in mouth ulcers. These are painful blisters and may occur on the roof of the mouth, tongue inner cheek or tonsils. They vary greatly in size and may be single blisters or occur in clusters. Like other oral problems, they may result in the child being reluctant to eat or drink and this places them at risk of dehydration and malnutrition. Management of Mouth Ulcers Wash hands Wet a clean soft cloth with salt water and use to wash child s mouth Paint mouth with Gentian Violet, twice daily Continue using Gentian Violet until 48 hours after ulcers have been cured Give Paracetemol for pain relief 17. The child s mouth should be cleaned as for oral thrush, using a clean, soft cloth. Hands must be washed before and after in order to protect the child from germs on the carer s hands and the carer from germs in the child s mouth. Gentian Violet should be painted on the affected area, twice daily and continued twice daily for 48 hours. Fluids and diet must be encouraged and regular pain relief given. Inflammation of gums Tooth abscesses Painful May not want to eat/drink Secondary infection Dental Problems 18. Ask trainees to describe what they see in the picture. How many of the children they see have bad teeth? How many of the children they see brush their teeth regularly and what do they use? HIV positive children commonly have bad teeth. The dental problems themselves are concerning but they often lead to secondary infections (e.g. abscesses, tooth decay, gum infections act as entry points for bacteria in to the body). These can be extremely painful. Once again, this causes distress and the child may be reluctant to eat or drink, placing them at risk of dehydration and malnutrition. Paediatric Palliative Care Manual for Home Bases Carers 103

107 Managing Dental Problems Daily Tooth Brushing Water and Salt mouth wash Chlorhexidine mouthwash Dental checks Antibiotic treatment 19. Dental problems can be prevented and managed through daily tooth brushing. Sticks commonly used for cleaning teeth are also effective. Salt or bicarbonate of soda solutions and chlorhexidine mouthwashes help to clean the mouth of bacteria. Children should be having regular dental checks, particularly when teeth show signs of decay, inflammation or infection. Antibiotic treatment may be required for infections - these must be commenced as soon as possible because infections may be difficult to treat. Preventing Oral Problems Regular tooth brushing Vitamins Nutritious foods Avoid sugary foods that will rot teeth Encourage calcium 20. In summary, ask trainees to draw on what they have learnt in this module and describe what they need to consider when helping to prevent oral problems. Regular tooth brushing helps to remove bacteria from the mouth. Vitamins and nutritious foods strengthen the immune system which is necessary to fight germs that are in the mouth. Sugary foods cause tooth decay, particularly if teeth are not cleaned properly. Calcium is essential for strong, healthy teeth. Managing Oral Problems Encourage diet and fluids Pain relief (Paracetemol) Salt and water mouth wash Gentian Violet Chlorhexidine Regular checks 21. In summary, ask trainees to draw on what they have learnt in this module and describe what they need to consider when helping to manage children with oral problems. Prompts should include preventing dehydration, pain management and treatment of the infection. Regular checks and monitoring of the child s condition is essential in order to assess whether the child is improving or deteriorating, assess the risk of complications such as pain, dehydration and malnutrition and then to refer the child needing further management and investigation. 104 Paediatric Palliative Care Manual for Home Base Carers

108 Module 11: Fever Module Objectives To demonstrate why children with HIV are likely to experience fevers To review the complications of fever in a child To equip trainees with the knowledge and skills required to assess a child with fever To review the management of a child with fever and when to refer To demonstrate the importance of the role trainees have to play in educating parents/carers in the prevention and management of fevers. Slide Presentation: Fever Fever Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of caring for children with fever, how they manage it and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Small Grant Scheme A raise in body temperature above 37.5 o C (IMCI 2002) During infections, the body is able to raise its temperature which helps to fight germs So fever is one of the most common signs of infection in ALL children What is Fever? 2. Ask trainees to explain what they understand by fever. Fever is a body temperature of 37.5 o C or above (IMCI, 2002). This fever or raise in body temperature is the body s own way of trying to fight the infection. Fever is therefore not an infection itself but a SIGN of underlying infection. All children can get fevers when they are sick. The slide shows the soldiers (white blood cells or immune system) trying to fight the germs and a raise in body temperature helps this process. Paediatric Palliative Care Manual for Home Bases Carers 105

109 Children with HIV More infections than most children More fevers than most children Fever may be a sign of: Chest infections Ear infections Skin infections Diarrhoea Meningitis Oral infections HIV Infection 3. Due to their weakened immune system (or damaged, destroyed soldiers), children with HIV get more infections than HIV negative children. They therefore get more fevers. If a child has a fever, this could be a sign of a number of different infections, the majority of which may be normal childhood illnesses as listed in the slide. HIV itself can also cause a fever. Fever in Children Fevers may cause discomfort to the child Fevers increases loss of water through the skin This increases the chance of dehydration in children High fevers may lead to febrile convulsion (seizures or fits ) 4. Ask trainees What are the consequences of fever in children?, Why should they concern us? Whilst fever is part of the body s way of fighting off infection, fever can also be very dangerous, particularly for a young baby or small child. Firstly, fever may cause discomfort to a child. Secondly, a child with fever can quickly become dehydrated - like adults, when children get hot, they sweat and lose a lot of water. However, children become dehydrated more quickly due to their relatively greater body surface area. Thirdly, a high fever can lead to febrile convulsions and even severe, permanent brain damage. Signs and Symptoms How would you know whether Sofiso has a fever? 5. Ask trainees to describe how they would assess whether Sofiso has a fever whilst visiting him in the home. Take particular note of whether trainees have access to or are using thermometers in the home. Ideally, Home Based Carers require thermometers if they are to be assessing children with fever yet this will be depend on local resources and practicalities. The next three slides discuss three methods of assessing fever. Has Sofiso got a fever? Touch the Child Forehead, stomach or other parts of body may feel hot to the touch He may or may not be sweating Is his heart rate (pulse) fast? 6. The first of three methods which trainees should be using to assess whether Sofiso has a fever is through touch. Ask trainees exactly where they should touch to feel for a fever. It must be stressed fever should be assessed by touching central parts of the child s body (e.g. forehead, stomach) rather than peripheral parts (e.g. hands and feet). The peripheries actually become cooler during fever. 106 Paediatric Palliative Care Manual for Home Base Carers

110 Has Sofiso got a fever? Look at the Child Is he withdrawn and/or reluctant to move? Is he irritable? Is he breathing fast? 7. Secondly, trainees should be looking at the child. Fever commonly causes discomfort and a child with fever may well be quiet, withdrawn and/or reluctant to move. Parents may report that the child is not himself. Conversely, the child may be irritable and difficult to console. During fever, breathing rate increases. Fast breathing (or tachypnea) may also indicate the child is distressed. Has Sofiso got a fever? Take the temperature Our eyes and hands are very helpful in asse ssing fever But, thermometers are more accurate and may be used to answer: How high is the child s temperature? Has the treatment effectively lowered the temperature? Has the fever risen? 8. Thirdly, a thermometer should be used. Touching and observing the child does give an indication that the child is hot, yet a thermometer is the only way to accurately measure fever. This is not only extremely important for telling us exactly how high the temperature is but also for assessing whether the interventions used for reducing the temperature have been effective or whether the fever has risen even further. This is vital for effective management of fever and ensuring the child s safety. Using Thermometers Try to keep the child calm before taking temperature Wash thermometer with cold soapy water and/or alcohol Shake thermometer hard until reading is below 36 degrees Place bulb end of thermometer well up in to armpit, holding arm down over it and elbow in to baby s side Hold position for 4-5 minutes, whilst singing songs/telling story NEVER leave the child with the thermometer he WILL move! 9. If thermometers are to be relied upon as a measure of fever, they must be used properly. Have one or more available as teaching aids. Trainees need to be confident in the use of thermometers. Although different varieties now exist (e.g. mercury, digital), mercury thermometers have been shown to be the most reliable and accurate. Digital ones also require batteries. Disposable plastic strips exist but these commonly spoil in hot conditions, making them useless. Mercury is poisonous If a thermometer is broken, this is extremely dangerous ALWAYS store a thermometer in a safe place where it will not be broken Remember!! 10. Mercury thermometers are supplied with a plastic case. The thermometer must always be kept within this, in order to protect it from breaking and leaking mercury. The case must then be stored in a safe place where it is unlikely to get knocked around and broken. Mercury thermometers should never be left where children may find them. Trainees need a safe method of transporting thermometers when visiting the communities. Paediatric Palliative Care Manual for Home Bases Carers 107

111 Reading Thermometers Hold thermometer in a good light Rotate until you see a silver line of mercury Line up mercury with numbers, marked in full degrees (36,37,38) and every twotenths degree (.1,.2,.3,.4) Point where mercury ends indicates the temperature Write it down straight away with time taken If the thermometer has been used as described in slide 9, an accurate measurement of fever will have been recorded and this must now be read. This can be a little tricky initially until the individual has seen the mercury and knows what to be looking for. Either now or at the end of this session, ask trainees to practice with the thermometers to ensure they are confident in reading them. Remember, thermometers should be cleaned between use. What to Do? Fever is usually a sign of infection in the child So you need to: Manage the fever Identify what may be causing the fever Any underlying infections can then be treated and managed appropriately 12. As discussed earlier, fever is not an infection itself but a sign of infection. Due to the potential dangers of fever in children, the fever must be managed immediately. In addition, the fever is a sign that the child needs assessment for any underlying infection. If trainees identify a child with fever, they have a vital role to play in a) helping to manage the fever and b) helping to ensure any underlying infection is treated and managed appropriately. Does the Child have Fever? If carer reports history of fever or temperature is 37.5 o C or above: Ask: For how long? If more than 7 days, has fever been present every day? (IMCI, 2002) 13. The IMCI guidelines (2002) recommend this procedure for any child with fever. Having confirmed a fever, trainees should ask the parent/carer for how long the child has had the fever. If they report that the fever has been there for 7 days, it is important to ask whether it has been there every day or intermittently. The answers to these questions are extremely important in order to help the doctor or professional nurse to whom they refer the child. Look and Feel for: Stiff neck Bulging fontanelle Suspected Meningitis if: Any general danger sign OR Stiff neck OR Bulging Fontanelle (IMCI, 2002) Risk of Meningitis 14. One of the greatest concerns for any child with fever is to exclude the risk of meningitis. This is not easy but the presence of a stiff neck and/or bulging fontanelle are associated with meningitis and need excluding. Teaching trainees to do this well is much more effective with a real child and should be included in any ward teaching. According to IMCI (2002), the child should be considered to be at risk of meningitis if there are ANY general danger signs (as discussed in Module 15: Danger Signs), OR the child has a stiff neck OR a bulging fontanelle. 108 Paediatric Palliative Care Manual for Home Base Carers

112 Suspected Meningitis Home Based Carers Administer one dose of paracetamol (Panado) for fever 38 o C or above Refer urgently! Professional Nurses Child needs dose of IM Ceftriaxone Test blood sugar Give one dose of paracetamol (Panado) for fever 38 o C or above (IMCI, 2002) 15. The management of a child with suspected meningitis will depend on the qualification of the Home Based Carer. IMCI recommendations are that the child needs Paracetamol, IM Ceftriaxone and a blood sugar test. This training programme assumes that most trainees are not professional nurses and their role should be to advise the parent to administer a dose of paracetamol (if the child is able to take it) and to then refer urgently. If professional nurses have been trained to do so, they should administer IM Ceftriaxone, Paracetamol and measure blood sugar and ensure the child gets to a clinic immediately. If No Suspected Meningitis Assess the child - Look, Listen, Feel for the following: Sore Throat Ear ache, pus from ear Difficulty breathing, noisy breathing Cough (+/- sputum) Diarrhoea Pain on passing urine Severe headache, neck stiffness, bulging fontanelle Skin Inflammation, sores, rashes Pain in joints Then give Paracetamol (Panado) and discuss with Professional Nurse 16. If the child has fever but no general danger signs, no stiff neck and no bulging fontanelle, other infections are likely. If trainees are able to identify any signs and symptoms, these may give an indication of the underlying infection. This information can be of great benefit to the doctor or professional nurse to whom they are referring the child. The child should be given Paracetamol to help bring the fever down. NB Stress to trainees they must always ask whether the parent/carer has already given a dose of Paracetamol as it may be less than 4 hours since the previous one. Regular administration of medication to: bring temperature down keep temperature down reduce discomfort encourage drinking and eating Managing Fevers 17. Paracetamol can be extremely effective at managing fevers yet the key to successful management is to give it regularly. Whilst a one-off dose may be sufficient for some cases of mild fever, the majority of cases of fever will persist and as soon as the first dose of paracetamol has worn off, the child s body temperature will increase once more. Regular dosing helps to bring down the fever AND keep it down. It also makes the fever easier to keep under control rather than waiting for the fever to get high again. Paracetamol not only brings down the fever but also helps to alleviate discomfort. Regular fluids and diet are also essential. Paediatric Palliative Care Manual for Home Bases Carers 109

113 Giving Paracetamol for Fever Age or Weight 2 months up to 1 Year 1 Year up to 5Years 6-12 Years Syrup (120mg/5ml) ml 5 10 ml ml Tablet (500mg) - - Half to 1 tablet Every 4-6 Hours AND No more than 4 Times a Day! 18. Trainees need to be fully aware of the difference between adult doses of paracetamol and paediatric doses. As discussed in Module 7: Medicines for Children, medicine doses vary according to the weight of the child. It may not always be possible to measure weight in which case age may be used in the case of Paracetamol. Doses in the table are written as a lower range and upper range, depending on the degree of fever. The upper range must never be exceeded. Managing Fevers NEVER wrap up a child with fever Undressing the child allows heat to escape Ensure cool, fresh air or fan the child Apply cloths soaked in tepid water to the child Do NOT let the child start shivering 19. In addition to Paracetamol, there are also important measures which must be taken to help reduce the fever. It is common practice all over the world to wrap up a child with fever as they feel cold. This is extremely dangerous as the heat has nowhere to go and the child will get hotter and hotter. The child needs to be undressed and exposed to fresh, cool air. The heat can then escape. Tepid sponging can be used but NEVER use cold water as the child s temperature will drop too quickly. Shivering places even greater demand on the child s body and energy available. Managing Fevers Encourage the child to keep drinking to prevent dehydration If breast fed, continue breastfeeding For non-brea st fed children, encourage drinks or small, frequent sips 20. As a child with fever is at risk of becoming dehydrated, it is extremely important that parents/carers encourage the child to drink plenty during the fever. Breastfeeding should continue and this will not only prevent dehydration but may also help to console the child if discomforted. For non-breast fed children, fluids such as water, milk, tea or juice should be encouraged unless the child also has diarrhoea when ORS should be given (as discussed in Module 13: Diarrhoea and Dehydration). Small, frequent sips of fluid ensure a steady intake of fluid and may be better tolerated than large volumes. Has it helped? Using these interventions can help to reduce a fever But, you need to be sure they have! Keep checking the child (touch, looking, thermometer) Continue regular fluids Continue Paracetamol (Panado) until you are sure the fever is over 21. The interventions that have been discussed can help to reduce a fever but it is extremely dangerous to assume that they have! A child with fever must be closely monitored to assess whether the interventions such as Paracetamol, undressing the child and exposure to cool, fresh air have helped. Regular fluids and Paracetamol should be continued until it is absolutely certain the fever has subsided. 110 Paediatric Palliative Care Manual for Home Base Carers

114 Febrile Convulsions Children adjust less quickly to high body temperatures Temperature above 38.5 C or a rapid change in temperature may lead to febrile convulsion Most common in children 6 months to 5 years Usually only last 1-2 minutes Signs and Symptoms: Collapse Eyes rolling upward Foaming at mouth Stiffening of the body Uncontrolled jerking movements Breathing difficulty in severe cases Handling Febrile Convulsions Keep calm Reassure care giver Ensure area around child is clear and safe Never restrain the child or place anything in mouth Loosen clothing around neck and body Position child with head lower than body if possible Child may lose consciousness but will usually come round without help If the convulsion lasts longer than 5 minutes, the child needs emergency help After a Febrile Convulsion The child may sleep Ensure child is on his side Give Paracetamol (Panado) if the child is conscious/ able to swallow Apply cool cloths to body NEVER put child in a bath Take child to a clinic for further investigation and treatment of cause 22. The body of a child cannot adjust to high temperatures in the same way that an adult can. One of the greatest concerns with high fevers in a child is that it may cause the child to have a febrile convulsion or fit. These can sometimes leave the child with severe neurological damage. The most common period during which febrile convulsions may occur is between 6 months and 5 years, usually lasting 1-2 minutes. Ask trainees if they have witnessed a child having a febrile convulsion and to describe what they saw. Not all children will look the same during a fit but common signs and symptoms are listed here. 23. Ask the same trainees how they felt during the child s convulsion, what happened and how they managed it. Trainees need to feel confident in knowing what to do for a child having a seizure. Children should be managed in much the same ways as adults. The primary focus is on ensuring the child does not harm himself during the seizure. Ask trainees about local practices which sometimes involve putting objects in the mouth during a seizure. Stress this should never be done. If the seizure does not resolve within 5 minutes, the child must be taken to a clinic as quickly as possible. 24. Children commonly sleep after a fit or convulsion. Parents/carers need reassurance that their child is safe and only sleeping. The child should be on his side to help him breathe well and to prevent him from aspirating (inhaling) if he vomits. The fever must be brought down and paracetamol should be given if the child is awake. Rectal paracetamol is quicker and more effective if there is someone trained to give it and suppositories are available. Tepid cloths can be applied to help bring down the fever but never cold cloths as this will bring the temperature down too quickly. In addition, the cold cloths cause the blood vessels to constrict (close) which pushes the hot blood back in towards the internal organs. Putting the child in the bath would be extremely dangerous for the same reasons and it could lead to more fits. Furthermore, it is extremely hard to protect a child if fitting in a bath and the child could drown. A child that has had a febrile convulsion needs professional assessment and treatment for the underlying cause of the fever. Paediatric Palliative Care Manual for Home Bases Carers 111

115 Note! If a child has a seizure and is not between 6 months and 5 years, this is likely to be caused by something other than fever 25. A fever is by no means the only cause of convulsion in children. As stated earlier, the most common period for febrile convulsions is between the ages of 6 months and 5 years. Trainees should be aware that if a child younger than 6 months or older than 5 years has had a convulsion, it is less likely to be a febrile convulsion but a neurological problem. The child must be assessed and managed appropriately in a clinic or hospital. Care Givers need to be taught how to recognise and manage temperatures in order to: Education Alleviate the child s discomfort Prevent dangerously high temperatures Ensure infections are treated as early as possible 26. Education for parents and carers is vital if children with fever are to be managed appropriately and protected from the potential dangers of high fever. Trainees are in a very important position in that they can help parents/carers to understand the possible consequences of fever, how to alleviate discomfort and prevent dangerously high temperatures. Importantly, trainees can ensure children with fever are followed up for appropriate management of underlying infection. Remember!! Fever is a very useful sign of infection Fevers must be managed properly to prevent distress and complications BUT, the child s behaviour is the best sign of how sick a child is :- A child may have: NO fever with infection eg pneumonia, meningitis (especially in malnutrition) HIGH fever with a mild cold 27. It has been shown that fever is a very useful indicator that the child has an underlying infection which must be treated appropriately. However, fever can be misleading as not all children will have fever with infection. Some children may be extremely sick yet have no fever (e.g. a child with malnutrition does not have sufficient energy in the body to raise its body temperature). Conversely, some children may get a very high fever with only a mild cold. So fever is a good indicator of infection but it should not be the sole indicator and the child s behaviour is the best sign of how well/unwell a child is, as will be discussed further in Module 16: Danger Signs. 112 Paediatric Palliative Care Manual for Home Base Carers

116 Module 12: Acute Respiratory Infections Module Objectives To review the importance of Acute Respiratory Infection in childhood To equip the trainee to recognise the symptoms and signs of Acute Respiratory Tract Infections in children To teach the trainees how to appropriately manage children with Acute Respiratory Infections within the trainees scope of practice Slide Presentation: Acute Respiratory Infections Acute Respiratory Infections Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children with Acute Respiratory Infections. Ask the trainees for their experiences of Acute Respiratory Infections (ARIs) in children, challenges they have faced, how they have managed them and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Percentage of Deaths Causes of Death in Children World-Wide Respiratory Infections Diarrhoea Measles Malaria HIV 2. More children die from acute respiratory illnesses (ARI) each year than from any other single cause. It is estimated that 1 in 5 of the 12 million deaths in children under 5 years old are from ARI. This is 400 deaths per hour. Paediatric Palliative Care Manual for Home Bases Carers 113

117 2.8 million HIV infected children worldwide HIV Infected children born annually in S. Africa HIV infected children are at increased risk of respiratory disease 30-40% admissions CFR=34% CFR=22% 77% deaths in HIV infected infants 3. HIV infected children are at more risk of getting an acute respiratory infection and also more at risk of dying once they have an ARI than HIV uninfected children % of children admitted to Chris Hani Hospital, Soweto are admitted with HIV related acute respiratory infections. 77% of HIV infected infants that died in a Durban study died from respiratory infections. The case fatality rates (number of children that die for every 100 children with a disease) are very high; 34% in Zimbabwe and 22% in Malawi. Children with HIV Get more respiratory infections Get worse respiratory infections Get different respiratory infections Die more often from respiratory infections Die most often from respiratory infections 4. Go over the points in the slide. It is important that trainees know the signs / symptoms of acute respiratory infections so that they can refer the child for care quickly and appropriately. It is important that you can pick an infection up early so it can be treated in time How to Diagnose Respiratory Infections Do you need these? 6. Ask the trainees whether they need a stethoscope and chest X-Ray to diagnose whether the child has a respiratory tract infection. NO. Most can be diagnosed without using the WHO Criteria. SEVERITY CRITERIA MANAGEMENT ANTIBIOTICS No pneumonia Pneumonia Severe Pneumonia Or Very Severe Disease IIMC Cough No tachypnoea Cough Tachypnoea No rib or sternal recession Cough Tachypnoea Chest Wall Retraction Unable to drink Cyanosis Supportive measures Antipyretics No antibiotics Supportive Measures Antipyretics Antibiotics Supportive Measures Antibiotics Oxygen Immediate Referral to secondary or tertiary unit Nil PO Amoxyl Or PO Bactrim IV Ceftrioxone and refer 7. The answer to (6) is NO! The World Health Organisation in its Integrated Management Illness Guidelines (IMCI 2002) has simple guidelines for the diagnosis of ARI and how to identify those children with the severest disease. ARI is graded into 3 levels of severity. Those children with severe and very severe pneumonia (in red) are most at risk and need urgent transfer for secondary level care. If Home Based Carers can identify these children then they can help reduce mortality. 114 Paediatric Palliative Care Manual for Home Base Carers

118 What is tachypnea? Breathing fast Under 2 months: 60/minute 2 months 1 year: 50/minute Over 1 year: 40/minute 8. The term tachypnea means to breath fast. Sick children can breathe fast for many reasons. Children will breathe fast if they have a fever, are septic or if they have a respiratory infection. All of these are serious and so IMCI has criteria to define what is fast breathing and when to refer to hospital. Go over the criteria in the slide for tachypnea. (IMCI 2002) What to ask Is the child able to drink or breastfeed? Does the child vomit everything? Has the child had convulsions? Does the child have a fever? Does the child have a cough? 9. To identify whether the child has an ARI or danger symptoms requiring transfer to hospital the trainees should learn to ask the questions in the slide. IMCI defines any child with a cough and fever as having an acute respiratory tract infection. Has there been difficulty in breathing? What To Do Look at the child generally: Lethargy Unconscious Look, listen, feel Look for cyanosis Look for chest indrawing Look & listen for stridor and wheeze Count the respiratory rate 10. After asking the questions, the carer needs to examine the child for signs which suggest an acute respiratory infection or any signs that would require urgent transfer. The WHO video on how to identify ARI should be shown as part of this module. Decide which sort of acute respiratory infection the child has What you find: Cough Fever No fast breathing No chest indrawing No Pneumonia What to do: Reassure the mother Give panado Encourage fluids If in doubt refer Ensure child is reviewed within 48 hrs. 11. Children who have a cough and fever but no other symptoms / signs are defined as having no pneumonia. The carer should educate the mother to: 1. Give regular anti-pyretics (Paracetamol) 2. Encourage regular oral fluids If the HBC is in any doubt they should refer up to a higher level of care. They should arrange for any child not referred onwards to be reviewed again within 48 hours either by themselves or at the clinic. This is important as children can deteriorate very quickly. It is important that the home Paediatric Palliative Care Manual for Home Bases Carers 115

119 based carer advices the child s guardian what danger signs to look for and to encourage them to seek further health care advice if they are concerned that the child is deteriorating at any time. The Danger Signs to look for are covered in Module 15: Danger Signs. What you find: Cough Fever Fast breathing NO CHEST INDRAWING Pneumonia What to do: Reassure mother Give Panado Refer to clinic Child will receive oral antibiotics. Ensure mum knows how to give them Follow-up in 48 hrs Ensure mum is giving medication If worse, refer hospital 12. Any child with a cough and fever who also has fast breathing is defined as having pneumonia. These children will need oral antibiotics and therefore the Home Based Carer needs to either refer the child to clinic or discuss the child with a professional nurse depending on local policy Severe or Very Severe Pneumonia What you find: Cough Fever Fast Breathing Chest Indrawing Cyanosis (very severe) If able: Give oxygen and IV ceftriaxone and refer to hospital. Under 6 months, add in oral bactrim. Test blood sugar and treat if low If not able: refer to nearest available health centre for stabilisation and transfer Children who have chest in-drawing and / or are cyanosed are seriously ill and need urgent referral to secondary level care. This should be done in accordance with local Home Based Care policy and local IMCI guidelines. If within the Home based Carer s scope of practice, the child should receive intravenous ceftriaxone before referral. Children under 6 months old are at particularly high risk of PCP and should also therefore receive oral bactrim. All children should have their blood glucose checked and rectified if low. Tuberculosis TB is common in both adults and children Children present with: Chronic cough (more than 2 weeks) Weight loss or Failure to thrive Night sweats TB is difficult to diagnose so if you suspect refer to clinic 14. South Africa has very high levels of Tuberculosis. It is one of 22 countries that the WHO has designated as TB Hot Spots. The diagnosis of TB is often difficult to make, especially in children. If the child has any of the three symptoms on the slide then TB must be ruled out. The child should therefore be referred according to local policies. 116 Paediatric Palliative Care Manual for Home Base Carers

120 Module 13: Diarrhoea and Dehydration Module Objectives: To review common causes of diarrhoea in children with HIV To review the complications of diarrhoea, with particular emphasis on dehydration and malnutrition To discuss methods of preventing diarrhoea in the home To equip trainees with the skills and knowledge required to accurately assess, manage and refer children with dehydration, within their scope of practice To demonstrate the importance of the role of the Home Based Carer in preventing dehydration in children Slide Presentation: Diarrhoea and Dehydration Diarrhoea and Dehydration Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce your self. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of caring for children with diarrhoea and dehydration, how they have managed it and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. What is Diarrhoea? Loose or watery stools Above 12 months of age, more than 3 loose stoolsper dayl (Eddleston & Pierini, 1999) Often accompanied by fever, nausea, vomiting, abdominal pain May be explosive or foul smelling May contain blood May be green Different categories of diarrhoea (WHO): Acute, watery diarrhoea for 14 days or less Persistent diarrhoea for longer than 14 days Dysentery: diarrhoea with blood, with/without fever 2. Ask trainees what they understand by diarrhoea. There are many different ideas of what constitutes diarrhoea. It is defined as the passage of abnormally loose or fluid stools more frequently than normal. Above 12 months of age, more than 3 loose stools per day is considered abnormal (Eddleston & Pierini, 1999). Diarrhoea is often accompanied by other signs and symptoms which may be distressing. Colour and consistency varies. Diarrhoea is considered in three different categories as listed. Paediatric Palliative Care Manual for Home Bases Carers 117

121 Remember! Every child s stools and stool pattern differ Ask the care givers what the child s normal stools are like A young, breast-fed baby may have many soft, watery stools in a day This is NOT diarrhoea 3. The definition of diarrhoea as more than 3 loose stools per day may be misleading as every child s stools and stool pattern will be different. This is why it is important to establish from the caregiver what is normal for the child. It may then be decided whether the current pattern is abnormal. Stress that children under 1 year will pass stools more frequently. In particular, the often frequent, soft watery stools of a young breast-fed baby may be confused with diarrhoea. Causes of Diarrhoea Unhygienic food preparation Unsafe storage of food Inadequate hand washing Antibiotics and other drugs Malnutrition No access to clean water HIV itself All images 4. Ask trainees for their thoughts on the cause(s) of diarrhoea. Diarrhoea has many causes. Many of these are linked to poor hygiene (unhygienic food preparation, poor hand washing) and lack of access to clean water. Infections in the food, water and environment are ingested and result in diarrhoea. Other causes include the side effects of drugs (e.g. antibiotic, ARVs); Malnutrition causes diarrhoea as food cannot be digested properly; HIV itself causes diarrhoea through direct damage to the gut. ALL Children are at risk Dependent on others for good hygiene Does not know to wash his hands Puts hands/objects in his mouth as part of his development Will play in/with anything! Their immune systems are still developing 5. Diarrhoea is one of the major causes of death in children around the world. For a variety of reasons, all children are at greater risk of diarrhoea than adults. Children are too young and dependent on others to be responsible for their own hygiene. If a carer isn t bathing them, most children will not be bathed. A child does not know of the importance of hand washing and germs will be ingested. This risk is increased due to the way a child will explore and play with anything! In addition to issues of hygiene, the risk of diarrhoea is increased due to the child s immature immune system which is still developing. Increased risk of Diarrhoea: Children with HIV More susceptible to infections causing diarrhoea HIV damages the gut so food is not absorbed properly Commonly malnourished, increasing severity and frequency of diarrhoea Multiple drugs are being taken which cause diarrhoea 6. Children with HIV have an increased risk of diarrhoea for 4 main reasons. 1) their weakened immune system makes them more susceptible to diarrhoeal disease (e.g. salmonella). 2) HIV itself damages the gut lining so absorption is reduced and food is lost as diarrhoea. 3) Although diarrhoea leads to malnutrition, malnutrition itself causes diarrhoea as food cannot be digested properly and the stomach wall is weakened. 4) Large numbers of drugs are taken, many of which cause diarrhoea themselves. 118 Paediatric Palliative Care Manual for Home Base Carers

122 Preventing Diarrhoea Good personal hygiene Hand washing Improve access to clean water Safe, clean preparation of food Safe storage of food Sterilisation of feeding implements Improve sanitation Good nutrition Breastfeeding Safe disposal of soiled materials 7. Ask trainees how diarrhoea can be prevented in the home. What measures do they encourage within the homes they visit? Examples are listed in the slide yet it is recognised that there are numerous challenges within the communities that Home Based Carers may be working in. For example, there may not be access to clean water or good sanitation; sterilisation fluids are commonly beyond the budget of families; access to nutritious foods may be limited. Discuss the local challenges that trainees are facing and strategies for resolving them. Bury faeces, use latrine Faeces Wash hands after defecation Breaking the Cycle Flies Fingers Cover Food Food Wash hands before eating and preparing food Adapted from Lankester, 2000) 8. The slide demonstrates the cycle of infection contributing to diarrhoeal infection. Food is contaminated in two ways. Firstly, flies land on the faeces which then land on the food. Secondly, fingers contaminated with faeces then come in to contact during preparation of or eating the food. This cycle must be broken. Flies must be prevented from contaminating food by i) burying faeces or promoting use of pit latrines which prevents flies from landing on the faeces and ii) covering food so the flies cannot land on the food. Fingers must be prevented from contaminating food and the mouth by washing hands regularly - after defecation, before preparing food, before eating. Trainees have a vital role to play in educating families of these prevention measures. Effects of Diarrhoea Diarrhoea may cause great discomfort to a child Diarrhoea may also be accompanied by or cause: fever abdominal pain 9. Ask trainees why diarrhoea in children is a concern. There are a number of reasons. The first relates to the pain and discomfort which diarrhoea is commonly accompanied by. Fever and abdominal pain are also common. These may cause great distress and suffering to a child. Paediatric Palliative Care Manual for Home Bases Carers 119

123 Effects of Diarrhoea Diarrhoea increases the risk of skin breakdown A child with HIV is then more likely to get skin infections which may be painful and difficult to treat Skin breakdown and infections must be prevented 10. This pain and distress may be exacerbated by skin breakdown which diarrhoea commonly leads to. Children with HIV tend to have prolonged, severe episodes of diarrhoea and the skin may become raw and extremely painful. Broken skin is likely to become infected due to the child s inability to fight off infections. These skin infections may be painful in their own right, be prolonged and difficult to treat. It is essential that a child with diarrhoea is managed appropriately in order to try and prevent such skin breakdown and infections. Effects of Diarrhoea Children with diarrhoea are at risk of dehydration Children become dehydrated more quickly than adults May occur over days or very quickly indeed Dehydration will lead to death if not managed appropriately and quickly 11. A child with diarrhoea can become quickly dehydrated and this may even lead to death. This may occur extremely quickly in a matter of hours or over a few days, depending on the severity of the diarrhoea, the size of the child and the child s overall condition. It is essential that children with diarrhoea are managed extremely carefully and appropriately in order that dehydration is prevented. The child in the picture is dehydrated and this will be discussed later. Getting it Right! All around the world, children with diarrhoea are dying from dehydration because carers: Stop fluids and food Do not know what fluids to give Do not know the signs of dehydration Do not know how quickly a child becomes dehydrated Do not act quickly enough Have not been taught how to make and use ORS DO not know what to do when the child vomits or refuses to drink 12. Most children who die from diarrhoea die from the loss of water and salts from the body, not from the diarrhoea or infection itself. This dehydration could be prevented with the right knowledge and understanding of i) how to prevent dehydration from occurring in the first place and ii) how to manage dehydration itself. This module aims to equip trainees with the necessary skills for preventing and managing dehydration in children and for teaching parents/carers how to do the same. How Do I Assess Dehydration? Does the child have Diarrhoea? Restless, irritable Sunken eyes Drinks eagerly, thirsty Sunken fontanelle Skin pinch goes back slowly Dry tongue, no tears 13. Ask trainees how they would assess dehydration. There are various signs which must be looked for in the child. These are listed here for discussion but should ideally be followed up by ward-based teaching to ensure that trainees are really familiar with what is meant by these terms and how to recognise them. The child in the picture has sunken eyes. Physical examination reveals a sunken fontanelle and slow skin pinch. Skin pinch in children is ideally carried out on the abdomen. 120 Paediatric Palliative Care Manual for Home Base Carers

124 Signs of Dehydration Not able to drink/ drinking poorly Weak, inactive or unconscious Watery stools Vomiting Ha s small amount of dark urine Ha s stopped passing urine 14. The mother of the child in the picture states that the child has not been drinking well for two days and has watery stools. Physical examination reveals he is very sleepy and difficult to rouse. If the child has diarrhoea AND vomiting, dehydration will occur more quickly. As the child becomes increasingly dehydrated, the urine will become darker and more concentrated and may stop completely. 15. Recommendations for the management of a child with diarrhoea are clearly set out in the IMCI (2002) guidelines. See Appendix v: Management of a Child with Diarrhoea. This table is enlarged in the trainees workbook. The recommendations for Home Based Carers and the management of Diarrhoea and Dehydration in this module are based on these guidelines. Trainees should be talked through the flow chart. It begins with questions for the carer which trainees should be confident in asking. This is followed by examining the chid for signs of dehydration. Ward teaching is extremely important in ensuring that trainees are confident in the assessment of these signs. The diarrhoea is then classified according to the presence, severity and duration of dehydration. Blood in the stool is categorised as dysentery. Whilst this table may appear overwhelming for many, there are some general principles which trainees need to take on board, depending on which category of dehydration the child falls in to. These will be discussed now. Plan A: Treat for Diarrhoea at Home Counsel the mother on the 3 Rules of Home Treatment: Give Extra Fluid Continue Feeding When to Return 16. As shown on the table, children with diarrhoea but not enough signs to classify them as severe or some dehydration should be managed according to Plan A. This involves counselling the mother on the 3 Rules of Home Treatment. 1) It is absolutely vital that the child gets extra fluids in order to prevent dehydration from occurring. 2) The carer must continue to feed the child in order to prevent malnutrition. 3) Finally the carer must be advised when to return to the clinic or when the Home Based Care Team will return to follow up the child (whichever is appropriate). Paediatric Palliative Care Manual for Home Bases Carers 121

125 Plan A: Give Extra Fluid As much as the child will take! Breastfeed frequently and for longer at each feed If exclusively breast-fed, give SSS in addition to breast milk If child is not receiving breast milk or is not exclusively breastfed, give one or more of: Porridge, Amasi (Maas), SSS, ORS 17. Giving Extra Fluids means giving the child as much as he will take. Children with diarrhoea all around the world could be prevented from becoming dehydrated if only parents/carers knew just how important it is to give extra fluids. Even though some may be lost as diarrhoea, some fluid will be absorbed and dehydration may be prevented from occurring. The types of fluids to give are described in the slide. Plan A: ORS and SSS Teach the Mother How to mix and Give SSS or ORS To make SSS: 1 litre boiled (or clean) water + 8 teaspoons sugar + Half a teaspoon salt Used to prevent dehydration ORS: Used to correct dehydration and can be life-saving! 18. Ask trainees if they have received training on the use of ORS and SSS, what they understand by them and their experiences of using them. These solutions have proved one of the greatest success stories of the last century, dramatically transforming the prognosis for people with dehydration. Trainees have an essential role to play in teaching parents/carers how to make SSS and when to use it in order to prevent dehydration from occurring. Always stress the importance of clean water and the need for accurate measurements of sugar and salt. Getting the measurements wrong could make the child even sicker! SSS is made with cheap, commonly available ingredients and may be taught easily. Whilst SSS is used to prevent dehydration, ORS is used to correct it and can save the life of the child. ORS can also be made but it is local KZN policy to give pre-packaged ORS to be made up at home, as shown in the picture. Trainees must be familiar with the correct method of preparing these formulations and teaching the parents/carers what to do. Plan A: Giving ORS & SSS Show the mother how much fluid to give in addition to the usual fluid intake: Up to 2 Years: ml after each loose stool 2 Years or more: ml after each loose stool Tell the mother to: Give frequent, small sips from a cup If the child vomits, wait 10 minutes. Then continue, but more slowly Continue giving extra fluid until the diarrhoea stops 19. Having made the SSS or ORS, parents/carers need to be taught how much to give to the child. This is described here and depends on the age of the child. Frequent, small sips are particularly effective but time-consuming. Encourage carers that this is time and energy well spent as dehydration and even death may be prevented. If the child vomits, extra fluids are even more important as the child is losing more fluid. Advise the carer to wait 10 minutes then recommence with small sips but more slowly. This MUST be continued until the diarrhoea stops. 122 Paediatric Palliative Care Manual for Home Base Carers

126 Plan A: Continue Feeding A child with diarrhoea lose s the nutrients he needs for: Growth, Energy and a Strong immune system Diarrhoea may therefore lead to: Malnutrition A weakened immune system More infections This is particularly worrying for a child with HIV who: Is normally malnourished Has a weakened immune system More likely to get infections 20. In addition to the need for extra fluid, food is extremely important. Due to the loss of nutrients in stool, children with diarrhoea commonly become malnourished, their immune system becomes even weaker and they are in turn more susceptible to infections. Ask trainees why this is particularly concerning for a child with HIV. These three are all conditions which the child with HIV already faces. If children with HIV and diarrhoea are not, these are further exacerbated. Plan A: Continue Feeding It is therefore extremely important to continue feeding a child with diarrhoea Even if the diarrhoea continues! DO not be surprised if the child loses weight having been ill with diarrhoea BUT, it is important to help the child regain that weight by encouraging an extra meal a day for two weeks Sometimes, a doctor may advise that the child does not taken certain foods ie milk. If the mother has been told this, encourage her to take that advise 21. A child with diarrhoea must therefore continue to be fed. In the same way that parents/carers commonly find it difficult to understand that more fluid is important with diarrhoea, trainees may need to spend time teaching them about the importance of more food. This is important not only during the diarrhoea itself but afterwards in order to help the child regain the weight he/she has lost. NB There may be exceptions to the rule where an individual child has been advised by a doctor not to take milk or another food/fluid and this advice should be adhered to. Plan B: Treat for Some Dehydration with ORS If a child with diarrhoea has been assessed and considered to have some dehydration, the child needs rehydration with ORS Refer to clinic immediately 22. Refer back to the IMCI table for management of children with dehydration. Whilst Plan A focuses on children who have no visible signs of dehydration and preventing dehydration from occurring, Plan B addresses children with signs of some dehydration. Children with some dehydration may get sick extremely quickly and they should be referred to a clinic immediately for appropriate management. If available, ORS should be given en route to the clinic which may be extremely beneficial and even be life-saving. Children with severe dehydration are managed according to Plan C as in the table and need referring urgently to hospital. Paediatric Palliative Care Manual for Home Bases Carers 123

127 Risk of Infection to Others Infection Control Others may be infected by the germs causing diarrhoea eg Salmonella Others may be infected by HIV is diarrhoea contains blood 23. A child with diarrhoea poses a great infection risk to others for two main reasons. Firstly, the diarrhoeal disease itself may be transmitted to others, particularly those whose immune systems are more vulnerable (e.g. others with HIV, the sick, young babies and children and the elderly). Secondly, HIV may be present in the diarrhoea. Strict infection control procedures must be used within the home. Trainees have a vial role to play in teaching carers and ensuring that they understand the importance of this. Any Home Based Care team will have strict policies and procedures which the Home Based Carer must adhere to for their own protection but also for the purposes of teaching carers in the home. Handling Soiled Linen Wear Gloves Cut small holes in a plastic bag and line a container with it Pour Jik 1:10 in to the plastic bag Put the dirty wound dressing, newspaper etc in to the plastic bag for half an hour Remove the bag, allowing the fluid to run into the container Put the plastic bag into a second plastic bag Dispose of it into a pit toilet or bury it OR Wear gloves Place waste in to double plastic bags Knot bags and bury them or dispose in pit Wash hands 24. Ask trainees how soiled linen is handled in the home. As part of this infection control education for carers, the carer will need to be taught how to handle linen that has been soiled. Again, local policies will be in place. These recommendations on the slide are from South Coast Hospice s Home Based Care team, offering two options depending on the available resources. Whilst all families would ideally have Jik (or bleach) in the house, it is recognised that this may not always be realistic due to its cost and availability and that, in practice, other measures will have to be put in place according o local circumstances. Summary Children with HIV will experience episodes of diarrhoea Diarrhoea may resolve itself without drugs Prevent dehydration using Plan A Treat dehydration using Plan B and C Provide nutritious foods throughout Refer if: a) diarrhoea persists after three days, refer for diagnosis and treatment of underlying cause b) child becomes sicker, develops danger signs You can easily prevent many children from dying! 25. Ask trainees to summarise what they have learnt from this module. Children with HIV are at increased risk of diarrhoea. The causes are many and trainees have an essential role to play in educating families about methods of preventing diarrhoea. Diarrhoea may resolve itself without drugs whilst other cases may need drug treatment. However, the diarrhoea itself has severe, life-threatening complications. The importance of the role of trainees in preventing and managing children with dehydration cannot be underestimated. Accurate assessment, educating carers, monitoring of the child, prompt referral and support for the child and family will save lives! 124 Paediatric Palliative Care Manual for Home Base Carers

128 Module 14: Neurological Problems Module Objectives: To describe the effect of HIV infection on the nervous system To identify various neurological abnormalities associated with HIV infection in children To discuss the role of Home Based Carers in the assessment, management and referral of HIV positive children with neurological problems Slide Presentation: Neurological Problems Neurological Problems Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience. Ask the trainees for their experiences of caring for children with neurological problems, how they have managed them and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Neurological Problems The child s nervous system may be damaged through: Opportunistic Infections in the nervous system The direct effect of HIV on the nervous system The side effects of ARVs Different parts of the nervous system may be involved 2. The nervous system comprises the brain, spinal cord and nerves. Different parts of this system may be damaged in HIV infection. This damage may be (i) direct damage by the HIV virus, (ii) through Opportunistic infections (e.g. cryptococcal meningitis) or (iii) as a result of the side effects of Antiretroviral drugs. Paediatric Palliative Care Manual for Home Bases Carers 125

129 Neurological Problems Slow Progression Some neurological problems occur very slowly You may notice these occurring gradually over time A parent may report changes in behaviour and physical ability Referral is necessary Fast Progression Some neurological problems occur very quickly The child is extremely sick Immediate Referral is vital 3. Neurological problems differ greatly in the speed at which they occur. It is important that trainees have an understanding of this in order that they are able to distinguish between neurological symptoms requiring referral and those requiring immediate referral. Some neurological symptoms progress slowly over time and these do require referral. Others occur very quickly, the child is usually very sick and the child needs immediate referral. Signs and Symptoms Depend on which part of the Nervous System is involved Range from: minor developmental disabilities to severe and progressive disorders of the brain Can have severe consequences for the child Usually associated with a very weak immune system May be the first sign of HIV in some children 4. Neurological problems differ greatly in severity and the implications they have. Signs and symptoms depend on the specific part of the nervous system damaged. Some children may have mild developmental disabilities which progress no further. Others may have more severe disabilities which continue to progress and may have severe consequences. Neurological problems are usually associated with the late stages of HIV but may still be the first sign of infection for many children. Growth & Developmental Delay HIV may affect a child s normal growth and development Signs and Symptoms Severe growth delay Loss of ability to learn or understand Loss of ability to walk or sit upright Loss of ability to speak in the same way 5. Children with HIV often present with a history of slow development, or loss of developmental milestones. Children may be able to sit well but are slow to learn to walk. Loss of developmental milestones is known as regression (e.g. the carer may express concerns that the child has lost the ability to walk, sit or speak). In the picture, the doctor is assessing the development of this 8 month old girl. Growth & Developmental Delay Assess regularly: Growth Head circumference Developmental age Language skills Compare these with normal findings for age Refer for appropriate management Support and education for the family about what to expect and how to care for their child 6. Children with HIV need to be assessed regularly for growth and development in order to ensure problems are identified as early as possible. Much of this takes place in the clinic and trainees should encourage carers to take the child for regular checks. However, assessment may also take place by trainees through observation of the child during visits to the home. Concerns can then be referred to the professional nurse or clinic. 126 Paediatric Palliative Care Manual for Home Base Carers

130 HIV Encephalopathy A disorder of the brain involving: Impaired brain growth Loss of muscle control Loss of ability to walk or sit Involuntary movements or spasms Unable to feed themselves Usually affects both sides of body Loss/ arrest of developmental milestone s Loss of ability to learn, understand, sit upright, walk, speak 7. HIV directly infects cells in the central nervous system which causes encephalopathy, a disorder of the brain. This involves impaired brain growth, loss of muscle control and loss of developmental milestones as already discussed. The child may lose intellectual abilities and motor skills, becomes weak and may develop spasticity (or rigidity). This is extremely distressing for the child and family members. The picture shows a cross section of the brain of a child who died of HIV encephalopathy. It is wasted and the ventricles are enlarged. HIV Encephalopathy Progression and severity varies Some children have episodes of improvement or stabilisation but do eventually deteriorate Other children stabilise and remain in that condition 8. All children differ. Some children have severe encephalopathy and their overall condition continues to deteriorate with time. These may be interspersed with periods of improvement or stabilisation. Other children will reach a plateau at which they no longer deteriorate yet their general condition will not improve. The diagram shows a child with severe rigidity and demonstrates the total dependency which children with neurological problems such as this may have. HIV Encephalopathy Assess for: loss of ability to control muscles loss or arrest of developmental milestones Refer for appropriate management Assist with: ARVs if prescribed Muscle relaxants Passive exercises Ambulation and mobility Providing information to family regarding progression of disease Application for child dependency grant 9. Children with signs and symptoms of encephalopathy need referral for appropriate management. Multidisciplinary team liaison can help to ensure the child and family s physical, psychological and social needs are met. ARVs have been seen to help children with encephalopathy but this can by no means be guaranteed as every child is different and the underlying causes are complex. Symptom management can help to alleviate suffering. Parents/carers need a great deal of support. Trainees need to be aware that local grants can be applied for if they refer to a social worker. Ideally, this training programme should include a session on local grants. Paediatric Palliative Care Manual for Home Bases Carers 127

131 Muscle Disorders Signs and Symptoms Muscle pain Muscle weakness Increasing difficulty walking Sensory disturbances Urinary incontinence Assess child Refer for appropriate management Support and education for child and family with what to expect and ambulation, exercises, general care 10. A variety of muscle disorders may be seen in children with HIV. Like many of the more gradual, slow onset neurological problems, these may not be immediately obvious to the trainee during a home visit. Instead, they may be reported by the parent or carer. The child in the picture has paralysis of the muscles on one side of his face (side away from his mother). This may make speech, eating and drinking difficult and time-consuming. The child is already at risk of malnutrition due to HIV and the parent/carer may not have the time, energy or ability to ensure that this boy eats and drinks all he requires. Children with muscle disorders need referring for appropriate management. Peripheral Neuropathy A disorder of the nerves in the hands, arms, legs or feet Caused by damage to the nerves by HIV or ARVs Signs and Symptoms Numbness Tingling Mild to severe, debilitating pain This may be very distressing and painful Children may not know how to describe this sensation Refer for appropriate management Assist child and family with symptom relief and ambulation 11. Like HIV positive adults, children with HIV also suffer from peripheral neuropathy, a nerve disorder affecting the hands, arms, legs or feet. There are a variety of causes but it is primarily the result of direct damage to the nerves by HIV or damage to the nerves by ARV drugs. The resulting symptoms can be extremely distressing and painful. Although a child may find it difficult to explain these sensations, the child may still be suffering and in need of symptom relief. CNS Infections If the child s immune system is extremely weak, OIs may infect the Nervous System eg bacterial meningitis, cryptococcus, herpes simplex and CMV Signs and Symptoms Fever Persistent, severe headaches Dislikes light Nausea and vomiting Confusion Unstable Seizures Behaviour/Personality Changes Doe sn t recognise main carer Coma 12. Whilst some neurological problems occur quite slowly as already discussed, others can occur very quickly and make the child extremely sick. Children with very weak immune systems are more prone to serious central nervous system (CNS) infections. Common signs and symptoms of CNS infections are listed on the slide. Children with any of these signs and symptoms on the slide must be taken very seriously indeed and referred. Module 15: Danger Signs deals with when to immediately refer a child with neurological problems. The child in the picture has recovered from cryptococcal meningitis. 128 Paediatric Palliative Care Manual for Home Base Carers

132 CNS Infections If Ceftriaxone available, give stat IM dose, according to IMCI protocol (IMCI, 2002). For seizures: If diazepam available, give stat dose, according to IMCI prtocol (IMCI, 2002) Refer for appropriate management 13. As stated in the IMCI guidelines, a child with presumed Central Nervous System infection needs a stat dose of intramuscular Ceftriaxone. Although this will not be in the scope of practice of most trainees, it IS possible for trainees to identify signs of possible CNS infections (as in previous slide) and refer the child to a clinic immediately. Tumours Children with HIV may develop tumours in the brain Signs and Symptoms: Headaches, nausea, vomiting Visual Changes Instability Difficulties with coordination Motor deficits Refer for appropriate management 14. HIV negative children do get tumours but they are more common in children with HIV. Signs and symptoms will vary, depending on the type of tumour and its location but any child with signs and symptoms as listed in the slide must be referred for investigation and appropriate management. Such signs and symptoms may not necessarily be identified by trainees during a home visit but through discussion with the carer regarding the child s health and behaviour. Seizures Infections and brain tumours may cause seizures NB Not all children having seizures have nervous system damage (eg fever may cause seizures in young children) Signs and Symptoms: Collapse Eyes rolling upward Foaming at the mouth Stiffening of the body Uncontrolled jerking movements Breathing difficulty (in severe cases) 15. Infections and brain tumours can cause seizures but trainees should understand that there are also other causes (e.g. fever). Trainees should be able to recognise common signs and symptoms of a seizure, as listed in the slide. NB some seizures may be more obvious and forceful than others. Encourage trainees to share any experiences they may have of caring for adults or children having a seizure, what they did and how they felt during the seizure. Handling Seizures Keep calm and Reassure care giver Ensure area around child is clear and safe Never restrain the child or place anything in the mouth Loosen clothing around neck and body Position child with head lower than body if possible Do NOT put anything in the child s mouth The child may lose consciousness but will usually come round without help If the convulsion lasts longer than 5 minutes, the child needs emergency help Administer rectal diazepam if available 16. Trainees need to feel confident in knowing what to do for a child having a seizure. Children should be managed in much the same ways as adults. The primary focus should be on ensuring the child does not harm himself during the seizure. Ask trainees about local practices which sometimes involve putting objects in the mouth during a seizure. Stress that this should not be done. If the seizure does not resolve within 5 minutes, the child must be taken to a clinic as quickly as possible. Any child that as had a seizure which has resolved also needs referring for further investigation. Paediatric Palliative Care Manual for Home Bases Carers 129

133 Children with HIV need you to: Summary Recognise signs and symptoms of neurological problems Identify serious problems requiring immediate referral Assist with management of children with neurological problems Assist carers with practical care of children with neurological problems in the home Make regular re-assessments of the child s condition Liaise with the multi-disciplinary team 17. If trainees can recognise signs and symptoms of more common neurological problems in children with HIV, they can help to ensure the child is referred appropriately, particularly in the case of an emergency. Children with neurological disabilities often require a great deal of practical support or symptom management. Their needs demand a great deal from a family that may well already be struggling to cope. Regular contact with the child and family helps to ensure any change in the child s condition can be assessed and managed properly. Multidisciplinary team liaison is essential to ensure physical, psychological and social needs are met. 130 Paediatric Palliative Care Manual for Home Base Carers

134 Module 15: Danger Signs in Children Module Objectives: To distinguish between conditions requiring professional attention and danger signs which require immediate professional attention To equip trainees with the knowledge and skills required to recognise and assess danger signs in children To ensure trainees know when to refer children with danger signs Slide Presentation: Danger Signs in Children Danger Signs in Children Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children with HIV. Ask the trainees for their experiences of assessing danger signs, how they have managed them and what they would hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Danger Signs in Children 2. As discussed throughout this training programme, a child with HIV will have various illnesses and symptoms throughout the course of their infection requiring referral to the professional nurse or clinic. These referrals are very important and should be carried out as soon as possible. However, Danger Signs are signs that a child requires immediate referral to a clinic or hospital as the child s life is threatened. Paediatric Palliative Care Manual for Home Bases Carers 131

135 Danger Signs in Children Some signs in a child are known as Danger signs You need to know how to look for them You can save a child s life Some are the same as in adults Others are different 3. Danger Signs are an emergency and trainees may be able to save the child s life by knowing how to recognise them and understanding the importance of getting the child to a clinic or hospital immediately. Some danger signs are the same in adults but others differ as children tend to become sicker much more quickly than adults. Action must therefore be taken sooner. Assessment of danger signs relies heavily on good communication with the carer and asking the right questions. Important Questions to Ask Carers Is the child more sleepy than normal? Doe s the child know who you are? Is the child more irritable than normal? 4. The carer knows the child best and he/she should be asked if they have noticed any change in the child s behaviour. The slide shows three extremely important questions which the trainee must be confident in asking the carer. If the child is more sleepy than normal, does not recognise the care giver or is more irritable than normal, there may be a neurological problem needing immediate attention. Ideally, ward teaching should be incorporated in to this module, allowing trainees to practice asking carers these questions. Important Questions to Ask Carers Is the child taking fluids as normal? Is child having as many wet nappies as usual? Are the nappies as wet? 5. A child becomes dehydrated very quickly and will die if immediate action is not taken. The three questions on this slide are extremely important in order to assess whether the child is at risk of dehydration. If the carer answers No to any of these, the child may become dehydrated. NB For some children, it may be difficult to assess the number of wet nappies as they may not be changed regularly. The trainees must confident in asking these questions. Again, ward teaching should be included. Important Questions to Ask Carers Has the child had a fit? Does the child have difficulty in breathing? If so: Is it affecting his feeding? Does it stop him from talking or crying? 6. More extremely important questions if the carer reports that the child has had a fit there could be a neurological problem or high fever. If the child has difficulty with breathing which is severe enough to affect feeding or stop him/her from talking or crying, this is a sign of severe chest infection. Again, trainees need to have sound knowledge of these questions and ward teaching will help them gain confidence in asking them. 132 Paediatric Palliative Care Manual for Home Base Carers

136 General Lethargy Floppy Important Danger Signs: Refer Immediately Increased tone: stiff Fits Unable to recognise family 7. The questions in Slides 4,5 & 6 help us to assess potential risks or danger for the child. This slide lists actual Danger Signs. If a trainee recognises any one of these signs in a child, they must refer the child immediately. The child needs emergency attention and his/her life may be saved by immediate action. Ensure trainees understand all the Danger Signs in the list. The child in the picture is lethargic, floppy and does not recognise his family. Ideally, incorporate ward teaching in order to ensure the trainees are able to recognise these danger signs. Important Danger Signs: Refer Immediately Severe Dehydration Lethargic or unconscious Sunken eyes Not able to drink or drinking poorly Slow Skin Pinch 8. These are more Danger Signs, this time indicating danger of severe dehydration. If a trainee recognises any one of these signs in a child, they must refer the child immediately. The child needs emergency attention and his/her life may be saved by immediate action. Review what was learnt in Diarrhoea and Dehydration by asking trainees to explain what is meant by these danger signs. The child in the picture has sunken eyes, is lethargic and is not drinking. Ideally, incorporate ward teaching in order to ensure the trainees are able to recognise these danger signs. Important Danger Signs: Refer Immediately Increased Respiratory rate with: Cyanosis or Chest indrawing or Using neck muscles to help breath 9. These are ALL Danger Signs and indicate respiratory danger. If a trainee recognises any one of these signs in a child, they must refer the child immediately. The child needs emergency attention and his/her life may be saved by immediate action. Review what was learnt in Acute Respiratory Infections by asking trainees to explain what is meant by increased respiratory rate, chest in drawing and use of neck muscles. NB Cyanosis should be assessed on the tongue. The child in the picture has chest in drawing. Ideally, incorporate ward teaching in order to ensure the trainees are able to recognise these danger signs. Paediatric Palliative Care Manual for Home Bases Carers 133

137 Important Danger Signs: Refer Immediately Nervous System Bulging fontanelle Stiff Neck Fit 10. These are ALL Danger Signs and indicate neurological danger. If a trainee recognises any one of these signs in a child, they must refer the child immediately. The child needs emergency attention and his/her life may be saved by immediate action. These may be signs of meningitis or other neurological illness. Ideally, incorporate ward teaching in order to ensure the trainees are able to recognise these danger signs. 134 Paediatric Palliative Care Manual for Home Base Carers

138 Module 16: Antiretroviral Drugs in Children Module Objectives: To introduce Antiretroviral Drugs (ARVs) and their role in controlling HIV To describe the impact of ARV drugs on children with HIV around the world. To discuss the challenges associated with ARV administration (toxicities, resistance, adherence) To explore the role of ARVs in palliative care for children with HIV To explore the role of Home Based Carers in ARV delivery for children with HIV Slide Presentation: Antiretroviral Drugs in Children Antiretroviral Drugs Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children on Antiretroviral Drugs (ARVs). Ask the trainees for their experiences of ARVs, challenges they face, their views on ARVs and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Small Grant Scheme Thembi is two years old and was born with HIV. In the past, the prognosis for children like Thembi in South Africa has been very poor. Thembi 2. Thembi is a two year old girl. She has AIDS. Like hundreds of thousands of other children infected with HIV in South Africa, she has severe failure to thrive, developmental delay and suffers from recurrent infections. She has lost weight and can no longer walk, although she used to be able to. She has chronic diarrhoea, severe oral thrush, skin and chest infections. In the past, as trainees will have experience of, the prognosis for children like Thembi in South Africa has been very poor. Paediatric Palliative Care Manual for Home Bases Carers 135

139 Prognosis for Children with HIV These children were all born with HIV In South Africa, how many of these children will reach their 2 nd Bbirthday? 5 th Birthday? 3. To demonstrate the prognosis for children born with HIV in South Africa, ask trainees how many of the children in the slide do they think will reach their first birthday. Single click will remove half the children, showing only 50% will reach their first birthday (or 50% will die before their first birthday). Another single click will remove another 40% of the original number, showing another 40% of children will not reach their fourth birthday. 10% of children will remain on the slide, showing only 10% of children born with HIV in South Africa reach their fifth birthday. New Hope!! 4. The prognosis for children living with HIV in Sub-Saharan Africa has been extremely poor but there is now new hope. HIV positive children living in Europe and the United States are now living for much longer and often surviving in to adolescence. Teenagers born with HIV are now growing up and facing the challenges of adolescence and safe sex. This is due to the arrival of Antiretroviral Drugs. Ask trainees what they understand by Antiretroviral Drugs. Antiretroviral Drugs (ARVs) 3 Main Classes NRTIs ddi, AZT, 3TC, d4t, Abacavir NNRTIs Efavirenz, Nevirapine Protease Inhibitors Kaletra and other PIs 5. Commonly abbreviated to ARVs (AntiRetroViral drugs), ART (AntiRetroviral Therapy) or HAART (Highly Active Anti Retroviral Therapy) (or ART/HAART), there are three main classes of ARV drugs. These are abbreviated to NRTI (Nucleoside Reverse Transcriptase Inhibitor), NNRTI (Nonnucleoside reverse transcriptase inhibitor) & PI (Protease Inhibitor). Trainees do not need to remember these long terms but it does help to remember there are three different classes of ARVs and each work in different ways. Trainees may be familiar with some of the individual drug names like AZT and Nevirapine. 136 Paediatric Palliative Care Manual for Home Base Carers

140 What are ARVs? Lots of drugs are used to treat or prevent infections in children with HIV But, ARVs actually fight the HIV virus directly They do NOT cure HIV HIV is now becoming a chronic, manageable condition for children 6. Children with HIV are prescribed a variety of drugs for preventing and treating infections. But these are to combat the effects of HIV (e.g. preventing PCP or treating candida). Yet they do not deal with HIV directly. ARVs fight the virus directly and HIV is now becoming a chronic, manageable condition like asthma or diabetes - people may live a long time if they take their medicines correctly. But ARVs cannot remove the virus or cure HIV! With ARVs, children infected with HIV can expect Fewer infections Enhanced Quality of Life Longer Life Now Now children with HIV in South Africa can expect a dramatic change in prognosis due to the increasing availability of ARVs. Remind trainees of slide 3 where 50% of children born with HIV in South Africa will die before their first birthday. In contrast, they may now expect fewer infections, a dramatic improvement in quality of life due to fewer infections, increased general health and to live for much longer. It is essential to stress to trainees that this is what is expected in the majority of cases but there will always unfortunately be exceptions where ARVs are not as effective. How do ARVs do this? 8. Ask trainees for their thoughts on how ARVs are able to achieve such a dramatic change in prognosis. Remind trainees that they do not cure HIV or eliminate HIV from the body. 9. To explain the way ARVs work, it is important to ensure trainees understand the effect of HIV itself. This simplified diagram uses soldiers to represent the white blood cells of the immune system (or more specifically, CD4 cells). Normally, the body has lots of soldiers circulating in the blood stream. If a germ, such as a virus or bacteria enters the body (click), the soldiers fight that germ, to protect the body from harm (click). NB even with lots of soldiers, they may still need help with medicines like antibiotics. Paediatric Palliative Care Manual for Home Bases Carers 137

141 10. When HIV enters the body (click), it damages the soldiers (CD4 cells) that normally fight it. The soldiers become fewer and fewer (click). Therefore, when germs enter the body (click), there are fewer soldiers to fight against them so the person becomes sick. Over time, HIV reproduces (click) and there is more and more virus in the body. At the same time, more and more soldiers are damaged (click) and more infections occur (click) as the body cannot fight them. These are known as opportunistic infections as they take opportunity of the weakened immune system. 11. Eventually, there is so much HIV in the blood (viral load) and very few soldiers (CD4 cells) so the body is susceptible to more and more severe opportunistic infections (click). Ask trainees to name some Opportunistic infections commonly associated with HIV infection in children as discussed in Module 1: HIV in Children. 12. ARV drugs control HIV by preventing it from reproducing (click). In this way, the soldiers are protected from damage by the HIV and the body can still fight against germs when they enter the body. When ARVs are started, the amount of HIV in the body should stop increasing as reproduction slows down. The amount of HIV (Viral Load) should then start falling. In turn, the amount of soldiers (CD4 cells) should start increasing again as HIV is no longer damaging them. So ARVs never cure the child as HIV will remain in his body BUT ARVs help to protect his immune system for as long as possible so that he can can fight off infections There will always be some HIV hiding in parts of the body so it is never completely removed by ARVs. A Viral Load test (expensive and not widely available) measures the amount of HIV in the blood. If an individual is taking ARVs, the result of this test should ideally be undetectable, meaning the amount is so small it cannot be found using the usual tests. HIV is still in the body. However, through controlling HIV, ARVs protect the soldiers of the immune system for as long as possible so that infections can be fought off. Paediatric Palliative Care Manual for Home Base Carers

142 Do all Children Need ARVs? No! Even if the child is experiencing some infections every now and then, his immune system may be able to cope for longer Before the Doctor decides to start a child on ARVs, he will consider: 1) What sicknesses does the child have? 2) How weak is the child s immune system? 3) Is there someone to give the ARVs to the child? So What s Involved? A combination of three different drugs is given Most children in South Africa will be given: 3TC +D4T +Kaletra Or 3TC + D4T + Efavirenz 14. Ask trainees Do All Children Need ARVs? It is commonly difficult for people to understand why drugs with such dramatic results should be held back from people until a later date. However, there are a variety of reasons why ARVs should not be started too early. These will be discussed in the following slides. Children should not be started on these drugs before they absolutely need to. A careful decision is therefore made based on the child s clinical condition, how strong the immune system is and importantly, whether there is an individual able to take responsibility for giving the child the ARVs correctly. 15. Experience with ARVs in Europe and the United States has shown that the most effective way of controlling HIV and preventing it from damaging the soldiers (immune system) is through the combined use of 3 different ARV drugs, using drugs from different classes (remember there are three main classes). Using ARVs which work in different ways means there is a much stronger control over the HIV virus. The combinations of drugs used will depend upon the location and national policy. Thembi has just started taking ARVs. Every day, she must take: Thembi 3.5 mls 3TC 9.0 mls D4T 2.25 mls Kaletra 3.5 mls 3TC 9.0 mls D4T 2.25 mls Kaletra 16. Thembi s drug regimen is an example of what is usually involved for a child taking ARVs. The doctor has decided Thembi would benefit from commencing ARVs and she has been prescribed 3TC (Lamivudine), D4T (Stavudine) and Kaletra. She must take ALL THREE every morning and evening. Note that that the drugs are not all the same volumes which may be confusing for parents/carers. She must also take 5 mls Multivitamins 5mls Bactrim Thembi 17. A child taking ARVs will also have to take other medicines too. Thembi must continue with Multivitamins to help boost her immune system and Bactrim is extremely important for protecting her against PCP pneumonia until her immune system is stronger. These medicines are only in the morning but it is all adding up. It may be very confusing for the carer and is a lot for Thembi to take. Other children may also be on TB medication, treatment for current infections and/or medicines for symptom relief. Paediatric Palliative Care Manual for Home Bases Carers 139

143 What to Expect If Thembi takes all these medicines they may work very well for her. Weight gain Increased appetite Increased energy Reduced size of glands Improved skin Fewer infections Enhanced quality of life Longer life 18. If Thembi takes her ARV medicines exactly as prescribed, it is very likely that she will do extremely well. Many children show dramatic signs of improved health within the first 3-4 months of starting ARVs. It is essential however to be realistic ARVs can work wonderfully well for a lot of people but there will be cases where this is not so. Carers must fully understand this when their child commences ARVs. But They can only work well if she takes them exactly as prescribed! This is known as Adherence But this is not easy! 19. The greatest challenge with ARV drug treatment is Adherence. ARVs can have dramatic results but only if they are taken exactly as prescribed. If they are not taken exactly as prescribed, resistance to the ARVs will develop extremely quickly and they will no longer be effective. Ask trainees how many of them have taken a course of antibiotics before? Did anyone miss a dose or not finish the course? Anyone that answered Yes was non-adherent. Adherence to ARVs is considerably more difficult and this should not be underestimated. Not like other medicines Every dose for life The right drugs The right doses The right way The right time 20. ARVs are not like other medicines. Once started, they need to be taken for life. All three drugs in the regimen must be taken. They must be taken in the right doses like Thembi s regimen, different drugs may be a different number of tablets or different volume. They must be taken in the right way a few ARV drugs have dietary instructions, needing to be taken with food or on an empty stomach. This must be adhered to if that drug is to work properly. And drugs must be taken at the right time if a patient takes them at 6am and 6 pm, they MUST be taken at these times, not earlier or later. 140 Paediatric Palliative Care Manual for Home Base Carers

144 Can the child take them? The drugs can only work if the child can actually take them Is she able to swallow the tablets? Is able to tolerate large volumes of syrup? Does she like the taste of the tablets/syrups? 21. For children, one of the first obstacles to good adherence is the child s ability to actually swallow them. Even adults have difficulties swallowing medicines children may find it very difficult to swallow large tablets. Paediatric formulations are improving as more syrup formulations and entericcoated capsules are becoming available (e.g. the enteric-coated capsules can be easier to swallow). In syrup form, 3 different ARVs can often total a large volume which may be difficult for some children to tolerate. The child may not like the taste of the syrup or suspension (NB generally, most are tolerated well with the notable exception of Ritonavir which tastes foul) Who s giving the ARVs? A child is dependent on the care giver for ARVs Does she understand the drugs? How does she feel about the ARVs? Can she remember to give them? Is she non-adherent herself? 22. Whilst adults usually take responsibility for their own medication (often with the help of a treatment supporter), a child is dependent on an adult for their ARVs. If the parent/carer does not give them, the child will not receive them (NB there are exceptions where some older children show remarkable independence and maturity but they should still be supported). Nonadherence in children is commonly the result of carers not understanding the regimen, having their own doubts about the value of ARVs, being unable to administer them due to their own illness or personal circumstances such as the need to travel. Remember, a carer may well have had negative experiences of ARVs themselves and not wish these for their child. A non-adherent parent is an indicator for possible nonadherence in the child. If the child doesn t take them properly? HIV will be able to start attacking the soldiers again, making them weak. The child will become sick again He may become resistant to those ARV drugs (the ARVs will no longer be able to control HIV) Once resistant, there are only a few ARV options left 23. Ask trainees what they think will happen if the child does not take the ARVs properly (i.e. is non-adherent) Remind trainees of Slide 12 where ARVs were shown to prevent HIV from reproducing and therefore protect the soldiers (immune system). If the child is non-adherent, HIV will start damaging the soldiers again and the child will not be able to fight off infections. Resistance to ARVs will develop. If the drug regimen stops working for the child, there are very few alternative options available. Paediatric Palliative Care Manual for Home Bases Carers 141

145 Giving ARVs to a Child Total dependence on care giver Adherence support involves practical advice to care giver Nutritional requirements may prove difficult 24. There is no doubt that the parent/carer has a direct influence on the success of ARVs for their child. Yet they need immense support with this. Remembering to give them and to give them correctly is a great challenge. Their child may not want to take the medicines which can be extremely stressful for parents/carers, particularly when they know how important they are. Trainees have an extremely important role to play in the success of ARVs for children through providing support for parents/carers as will be discussed. Giving ARVs to a Child Developing own identity Negotiation is difficult! Refusal to take medicines is common Palatable, easy to swallow medications is essential Disguising ARVs is helpful Play therapy reduces anxiety and increases sense of control 25. Different children will respond differently to medicines and an understanding of this is essential in order to help with adherence. Young children are developing their own sense of identity and learning what they like/dislike and want/don t want. Giving medicines can be difficult to this age group. If children have been taking since medicines since birth, children tend to tolerate them better as it is what they are used to. Young children need medicines that taste nice and in forms that are easy to swallow. Disguising tablets in peanut butter/jam can be helpful but it is more difficult with syrups. Children respond well to play therapy (e.g. play with empty syringes and water for example) as this can reduce anxiety and increase sense of control. Giving ARVs to a Child Increased understanding Has lots of questions!! Open explanations about medications is essential Sharing responsibility need sense of control but not responsibility beyond their years! 26. Older children have greater ability to understand events involving them and need more information about why they must take it. As discussed in Module 5: Talking With Children About HIV, this need not mean naming the diagnosis but giving the child explanations can greatly help adherence (e.g. Unfortunately the soldiers in your body are not as strong as other people s. So you need medicine to help make them strong so that you don t get sick so often). They usually have many questions and these must be answered honestly. Open talking can greatly help children who are having difficult with their medicines. Children can be encouraged to have more control over taking their medicines but should not be given overall responsibility for it. This is for the parent/carer to do. 142 Paediatric Palliative Care Manual for Home Base Carers

146 Giving ARVs to a Child Most challenging age group Want to be independent Need to be like friends Rebellion and nonadherence common Frequent conversations re adherence important Respect complex needs and circumstances 27. Adolescents are commonly the most challenging group when it comes to adherence. They are becoming increasingly independent as they move towards adulthood. This can lead to rebellion as they want control over their own lives and to be like their friends. The way information is being shared with adolescents or whether they have been informed of their diagnosis plays a large part in adherence. Where information is not being shared or they have not been told, non-adherence is more likely to occur. They do not understand what is happening to them and/or non-adherence is their way of having control in their lives. Alternatively, non-adherence may be a sign that they are not coping well with the news of their diagnosis. Adolescents need a great deal of support and respect of their need for independence whilst never losing sight of the importance of adherence. Talking with the Child Taking Medicines Together Sticker Charts Play Therapy Handy Hints! 28. Whilst giving medicine to a child can sometimes be a big battle, it can often be resolved using simple techniques. The first step should always be to talk with the child as this can help him to understand further (as discussed in Modules 3, 4 & 5). Children who have refused medicine can often be perfectly happy to take it once they have had even very simple explanations. This does not mean they have to be told they have HIV. Children also respond well to taking medicines at the same time as another as they no longer feel alone or different. Sticker charts allow the child to reward him self every time he takes medicine, encouraging a sense of control. Play therapy (e.g. using empty syringes and water) can also be very powerful. Colour-coding the medicines and the sticker chart can help both parent and child. Paediatric Palliative Care Manual for Home Bases Carers 143

147 Mixing Tablets Pill boxes Pill crushers Pill Swallowing Play Groups Handy Hints 29. There are other strategies which can help with administration of ARVs to a child. These include mixing tablets with a favourite jam; pill boxes reduce the risk of confusion over doses or missing doses; pill crushers (or the back of a spoon) can be used to break up tablets, making them easier to swallow; pill swallowing exercises can be used to ensure children are able to swallow tablets before they are prescribed. This is dependent on the local pharmacist as the child is given placebos of increasing sizes, starting very small and finally reaching the size of the ARVs. Children can benefit greatly from play groups in which they explore issues such as giving medicine to each other. Support for Carers Teach carers what to give Teach carers how to give it Assess carer giving medicine Incorporate in to daily life Regular visits and reassessment Handy Hints! g 30. Support for carers is fundamental to ensuring good adherence for children. They need practical advice about what to give and how to give it (e.g. sticker charts or calendars can be of great help; teach them how to measure doses and give them to the child). Observing the carer whilst measuring and giving the ARVs can help to identify any problems. Parents/carers need support in incorporating ARVs in to daily life (e.g. identify something the care giver does every morning like brushing teeth and that is when she gives the medicines each morning) to help her to remember but also so that it does not start dictating daily life. If trainees are able to visit families regularly, offer support and refer any problems, they can have an immense impact on the success of ARVs It is true! Side Effects of ARVs ARVs commonly cause side effects in adults and children These may: cause distre ss to the child decrease quality of life lead to non-adherence I v e heard ARVs could make my child even sicker? 31. Unfortunately, ARVs do have side effects. But so do many other drugs! Side effects vary according to the particular drugs being taken. Unfortunately, they can be distressing and decrease quality of life. If side effects are not managed properly, parents may be put off the ARVs as they do not want the child to experience the side effects or feel they are more harm than good. The child may wonder why people want him to take medicines that make him even sicker. The result is non-adherence. 144 Paediatric Palliative Care Manual for Home Base Carers

148 Often last a short time only Side effects Symptoms may be alleviated with medication Early identification, referral and appropriate management is essential Support and encouragement for the child and family vital nausea vomiting diarrhoea abdominal pain skin rashes headaches 32. The side effects of ARVs are commonly transient, passing within a few weeks of starting the drugs. Common side effects tend to be related to the GI tract and skin as listed on the right of the slide. These may be difficult to differentiate from other illnesses. The child needs to be seen as soon as possible in the clinic prescribing the ARVs for appropriate management. Side effects can often be managed well with other drugs (e.g. anti-emetics) which alleviate symptoms and enable the child to continue with the ARVs without being distressed. Stopping the drugs? Only the Doctor should stop the drugs! 33. Parents/carers of children on ARVs should be counselled in the clinic and clearly informed of what side effects to expect. They should know what to do if the child experiences these or they are concerned. However, parents may be reluctant to go to the clinic and decide to stop the ARVs. Parents/carers must NEVER stop the drugs themselves but always seek advice from those in the clinic who are trained what to do in the event of side effects. Many of the side effects are safe and ARVs can be continued. But only those in the clinic (usually the doctor) will have been trained to make that decision. It is extremely dangerous for those who have not been trained, to make decisions about continuing or stopping drugs in the event of side effects. If in doubt, ASK! Severe side effects Long-term side effects may also occur: Changes in body fat Damage to body cells Damage to bone Cancers Always reinforce the importance of clinic appointments and blood tests to the care giver 34. In addition to short-term side effects which can be managed with symptom relief until they pass, there are sometimes other long-term side effects. Examples are listed in the slide. Unfortunately, in some cases, it would be unsafe for the child to continue on ARVs with certain side effects. Again, only the doctor or others trained to do so can make that decision. Some of these can only be identified through blood tests. This is one reason why regular clinic appointments are so important - the doctor can make sure the child gets all the benefits of ARVs whilst also checking that the ARVs are not causing any harm. Paediatric Palliative Care Manual for Home Bases Carers 145

149 Side Effects of ARVs are a big concern Particularly as: children s bodie s are still developing children may well be exposed to the se drugs for much longer than adults A concern! 35. It has been stated in other slides that whilst ARVs have dramatic effects on the prognosis for children, it is also important to be realistic. Side effects of ARVs are a big concern ARVs have not been used for long enough to know the long term effects on children s bodies that are still developing. Children may also take these drugs for many years longer than adults. Having said that, we do know that the vast majority of children who have been taking ARVs in Europe and the States are doing extremely well. You have a vital role! ARVs can have an immense impact on the quality and length of life of a child with HIV However, this is threatened by two great challenges: Children must adhere well if ARVs are to work Side Effects may occur 36. Over the following years, more and more children across South Africa, and indeed the whole continent, are going to have access to ARV drugs. Children with HIV will be managed as outpatients, being prescribed drugs in the clinic and then sent home to take them. The two greatest challenges of ARVs are the need for good adherence and that side effects may occur. Both these issues will be faced by parents/carers in the home, far from the clinic. The support they need is in the home. Home Based Carers are going to have a prominent role in support, referral and advocacy for children taking ARVs and their families. Your Role in Adherence How could you help to ensure children get their ARVs? f 37. Drawing on what they have learnt in this module, ask trainees to consider the challenges associated with good adherence to ARVs for children. Then ask what role they could play in helping to ensure that children are adherent. If time allows, ask trainees to break in to groups to discuss this then feed back to the whole group. Your Role in Adherence Ensure carer understands regimen and importance of adherence In a non-confrontational manner, assess whether carer is giving ARVs? Regular support and encouragement for child and family Regular monitoring and re-evaluation Multidisciplinary Liaison Encourage regular clinic appointments Home Visits to offer support Encourage Faith to adopt a treatment supporter 38. This slide summarises some of the issues which trainees will hopefully have raised in answer to the previous slide. The role is extremely varied but involves trainees in education, counselling, monitoring, support, liaison and referral. The importance of their role in promoting adherence cannot be underestimated. It should be stressed that whilst this may well be new grounds for many of the trainees and many are commonly overwhelmed, this is a role that will develop over time as they gain more and more experience. 146 Paediatric Palliative Care Manual for Home Base Carers

150 Your Role in Addressing Side Effects How could you help to reduce the chance of side effects affecting a child s quality of life? f 39. Drawing on what they have learnt in this module, ask trainees to consider what their role could be in addressing side effects that children may be experiencing and in turn, enhancing the child s quality of life. Your Role in Addressing Side Effects Regular monitoring Knowledge of the common side effects of ARVs Educating carers what to expect/look out for Educating carers to call if concerned Making prompt referrals Support and encouragement for the child and family Assist with symptom control and management Re-evaluation of symptoms 40. This slide summarises some of the issues which trainees will hopefully have raised in answer to the previous slide. The role is similar to that of promoting adherence. It is extremely varied and involves trainees in education, counselling, monitoring, support, liaison and referral. The importance of their role in addressing side effects, promoting quality of life and enabling the child to continue safely on ARVs cannot be underestimated. Again, it should be stressed that whilst this may well be new grounds for many of the trainees and many are commonly overwhelmed, this is a role that will develop over time as they gain more and more experience. Summary ARVs are dramatically improving the prognosis for children with HIV Yet, they can cause great distress, anxiety and confusion for children It is equally difficult for carers, who are commonly under enormous strain with their own diagnosis and ARVs The child and family MUST be considered as a whole They require immense support and encouragement 41. Antiretroviral drugs are not a cure for HIV. However, they bring new hope for children infected with HIV, enabling them to live for longer with dramatically improved quality of life. However, they have their challenges and children and their care givers need immense support. It should be stressed that ARVs are a co-therapy they must NEVER REPLACE good nutrition and hygiene, prophylaxis and management of infections and symptoms but be one part of the comprehensive care for children with HIV. Paediatric Palliative Care Manual for Home Bases Carers 147

151 References Bodger, S., Dowie, M. et al (2002) Talking To Children and Families about HIV. Best practice guidelines for professionals working with HIV Positive Children and Young People in Lambeth, Southwark and Lewisham, London Brookes, H., Shisana, O. & Richter, L. (2004) National Household HIV Prevalence and Risk Survey of South African Children, Human Sciences Research Council, South Africa Department of Health (2003) National HIV and Syphilis Sero-prevalence Survey of Women Attending Public Ante-Natal Clinics in South Africa Summary Report, South Africa Department of Health (1997) Comprehensive Home/Community Based Care Training Manual, Department of Health, South Africa Eddleston, M. & Pierini, S. (1999) Oxford Handbook of Tropical Medicine Oxford University Press, Oxford Francis, L & Rose, J (2003) Positive Living: Food & Us John Snow International- UK, Harare IMCI (2002) KwaZulu-Natal Integrated Management of Childhood Illness Guidelines, University of Kwa-Zulu Natal, Durban Lankester, T (2000) Setting Up Community Health Programmes. A Practical Manual for Use in Developing Countries. MacMillan Education Ltd., London Lauden, M. (1999) South Coast Hospice s Community-Based HIV/AIDS Home- Care Model HIV/AIDS - Best Practice Series Department of Health, Pretoria Mallman, S. (2002) Building Resiliency Among Children Affected by HIV/AIDS, Catholic AIDS Action, Namibia National Department of Health (2001) Presentation on Nutrition Department of Health, South Africa. Pearce, J. (2004) Paediatric Palliative Care Pain Management Policy, South Coast Hospice, South Africa REPPSI (2003) Psychosocial support for children affected by HIV/AIDS Zimbabwe: Regional Psychosocial Support Initiative Tolfree (1996) in Mallman, S. (2002) Building Resiliency Among Children Affected by HIV/AIDS, Catholic AIDS Action, Namibia 148 Paediatric Palliative Care Manual for Home Base Carers

152 UNAIDS (2004) UNAIDS Report on the Global AIDS epidemic 2004, UNAIDS, Geneva UNAIDS, UNICEF, USAID (2004) Children on the Brink 2004: A Joint Report of new orphan estimates and a framework for action, USAID UNAIDS (2002) Paediatric HIV Infection and AIDS, Best Practice Collection, UNAIDS, Geneva UNAIDS (2002a) Fact Sheet 2002: Sub Saharan Africa. United Nations Convention on the Rights of the Child (1994) The UK s first Report to the UN Committee on the Rights of the Child. HMSO, London. World Health Organisation (1998) Cancer Pain Relief and Palliative Care in Children, World Health Organisation, Geneva. Paediatric Palliative Care Manual for Home Bases Carers 149

153 Resources Baylor College of Medicine (2001) HIV Nursing Curriculum, Bristol Myers Squibb, Houston Evian, C. (2000) Primary AIDS Care Jacana Education, Houghton. Morgan, J. (2003) Stories from the Pandemic. Publish Your Life. No. 2 March. Centre for Social Science Research, University of Cape Town. O Neill, J., Selwyn, P. & Schietinger, H. (2003) A Clinical Guide to Supportive & Palliative Care for HIV/AIDS, US Department of Health & Human Sciences, USA. Uys, L. & Cameron, S. (2003) Home-Based HIV/AIDS Care Oxford University Press, Cape Town World Health Organisation (2002) Scaling Up Antiretroviral Therapy in Resource Limited Settings, WHO, Geneva 150 Paediatric Palliative Care Manual for Home Base Carers

154 Appendix (i): Suggested Training Programme Day 1 08:30 09:00 Registration & Introduction 09:00 10:30 HIV in Children 10:45-11:45 Role of The Home Based Care Giver 11:45 12:00 Question Time 13:00 14:00 Impact of HIV on Children 14:00 15:00 Helping Children to Cope with HIV Day 2 08:00 09:00 Talking with Children about HIV 09:00 10:00 Medicine for Children 10:00 10:15 Question Time 10:45 11:45 Pain 11:45 12:00 Question Time 13:00 14:00 Psycho Social Statutory Issues (done locally) 14:15 15:30 Nutrition in Children with HIV Day 3 08:00 09:00 Danger Signs 09:15 10:15 Fever 10:45 11:45 Skin Problems 11:45 12:00 Question Time 13:00 14:00 Oral Problems 14:00 15:30 Ward Teaching Day 4 08:00 09:00 Acute Respiratory Infections 09:15 10:15 Diarrhoea & Dehydration 10:45 11:45 Neurological Problems 11:45 12:00 Question Time 14:00 15:30 Ward Teaching Day 5 08:00 09:30 Role of ARVs in Paediatric Home Based Care 10:00 12:00 Questions, Evaluation of Programme & Certificates Paediatric Palliative Care Manual for Home Bases Carers 151

155 Appendix (ii): Course Evaluation Form Evaluation of Training Course 1. Please indicate which training modules you have attended (please tick) HIV in Children Role of The Home Based Carer Impact of HIV on Children Helping Children to Cope with HIV Talking With Children about HIV Nutrition Medicines for Children Pain Skin Problems Oral Problems Fever Acute Respiratory Infections Diarrhoea and Dehydration Neurological Problems Danger Signs Antiretroviral Drugs 2. Did the training meet your expectations? (please tick) Yes No If No, please explain why.. 3. Which sessions were most helpful to you? Which sessions were least helpful to you? Paediatric Palliative Care Manual for Home Base Carers

156 5. Were the training materials clear and easy to follow? Yes No 6. Did the trainer(s) deliver the material in a way that was clear and easy to follow? Yes No 7. How could this training be improved in the future? What specific skills have you acquired during this training?.. 9. Any other comments?.... THANK YOU VERY MUCH Paediatric Palliative Care Manual for Home Bases Carers 153

157 Appendix (iii): Home Based Care Givers Scope of Practice This training course has been designed with consideration of the Home based Care Givers Scope of Practice, as defined by South Coast Hospice (2003). Procedures are planned by a Professional Nurse and carried out under the direction of a Professional Nurse: a) Care of the patient according to care plan b) Promotion of health and maintenance of the hygiene of patient/family and community c) Promotion and maintenance of the physical comfort of patient, comfort, rest, sleep, exercise and reassurance of family d) To prevent physical deformities and other complications in a patient e) To assess patients in critical conditions e.g. temperature, pulse and respiration and report f) Promotion and maintenance of the body functions g) Promotion of the nutrition of patient/family and community h) Promote communication with a patient during care i) Prepare and assist Professional Nurse during nursing procedures j) Care of dying patient and a recently deceased patient k) Bereavement care for family/friends l) Refer patient to clinic/hospital when necessary m) Networking with other departments e.g., Social Departments, Hospitals, Clinic, Spiritual Leader 154 Paediatric Palliative Care Manual for Home Base Carers

158 Appendix (iv): Pain Rating Scales for Children A) Visual Analogue Scales No Pain Moderate Pain Worst Pain Ever B) Wong and Baker Faces Scale C) Counters, Buttons, Bottle Tops The child uses different numbers of counters to indicate varying levels of pain (e.g. one for a small amount of pain, two for moderate pain, three for a lot of pain and four for severe pain) D) Eland Colour Scale The child is given a picture with the outline of a child s body, both front and back. He then uses colours to indicate the location and severity of the pain. E) Diaries The child records his pain in a diary, describing the time, location, severity ad duration of pain. Interventions may also be included as a record of what has helped or not helped to control the pain. Paediatric Palliative Care Manual for Home Bases Carers 155

159 Appendix (v): IMCI Guidelines (2002) Management of a Child with Diarrhoea 156 Paediatric Palliative Care Manual for Home Base Carers