The needs for palliative care in HIV/AIDS care setting. Linlin Lindayani

Transcription

1 The needs for palliative care in HIV/AIDS care setting Linlin Lindayani

2 HIV is important indicator in SDGs Target: By 2030, end the epidemics of AIDS

3 HIV: THE FACTS

4 Increase in people receiving ART over time 19.5 [ ] million on treatment by million on treatment by mid-2017 Source: UNAIDS/WHO estimates.

5 Decline in HIV incidence and mortality over time People newly infected with HIV globally People dying from HIV related causes globally Source: UNAIDS/WHO estimates

6 Figure 3 Advances in treatment and early diagnosis mean that today PLWHIV can expect to live as long as the general population Gueler et al. AIDS.2017, 31: The Lancet HIV , e349-e356doi: ( /S (17) )

7 Mortality Rate Caused By AIDS Reported in Indonesia, ARVs Free (Ministry of health of Republic Indonesia, 2013) 7

8 However, living longer with HIV poses a new challenge: growing old with HIV by 2030, it is estimated that 84% of PLWHIV in the U.S. will be living with an agerelated comorbidity (Vancen, 2015)

9 Why palliative care? Improving quality of life (QOL) people living with HIV is priority as they live longer Accepted worldwide & recommended by WHO (Huang, 2013; WHO, 2005) Improves quality of life (QOL) symptom control reducing anxiety (Huang, 2013; R. Harding & Higginson, 2005 )

10 56% wanted to die at home 25% of Cancer patients did 20% of people with other diseases did 11% wanted to die in hospital 47% of Cancer patients did 56% of people with other diseases did 24% wanted to die in a hospice. 17% of Cancer patients did 4% of people with other diseases did National Council for Palliative Care,2013

11 Definition "an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment, and treatment of pain and other physical, psychosocial and spiritual problems" (World Health Organization)

12 Hospice... services designed to meet the physical, social, psychological, emotional, and spiritual needs of terminally ill recipients and their families.

13 Palliative Care & Hospice Compared Hospice Home / in-patient Treatment: comfort care Palliative care Home / in-patient Treatment: lifeprolonging allowed Timing: Diagnosis to end-of-life Timing: last 6 months Payne, et all (2008)

14 Components of Palliative Care Effective symptom control & communication Rehabilitation maximising independence Continuity of care Coordination of services Terminal care Support in bereavement Payne, et all (2008)

15 Nobody want to take care HIV death Body They didn t have true knowledge about HIV/AIDS Base on Ministry of Health survey : 42,5% have right knowledge about definition of HIV 15

16 Palliative care in Indonesia for HIV HIV/AIDS health services not well- established: 2007 palliative care for cancer patients 2011 Integrated palliative care to HIV/AIDS 2017 Hospital: Cancer palliative care NOT HIV/AIDS palliative care YET (Ministry of health of Republic Indonesia, 2017) 16

17 Cross sectional design with Convenience sampling Location: One referral hospital for HIV in Bandung A total of 215 of patients were agreed to join in our study 17

18 The prevalence of problems and priority of demands for palliative care in people living with HIV in Indonesia (N = 215)

19 Mean scores of domains for problems and demands for palliative care at different disease stages

20 Scope of Problem in Palliative Care 1. Many Health Care Provider are not well prepared to deal with death and dying 2. Lack of Teamwork with multiple profession 3. Nonmalignant or chronic conditions, (such as cardiorespiratory disease) are usually treated with acute care focus 4. Health Care Provider especially Nurses are frustrated by giving futile treatments

21 5. Lack of a palliative care plan may mean patient is less likely to have a good death 6. Palliative care vs. hospice care is not well understood 7. Limited training in palliative care --Traditional education models are less effective for values, communication, and behavior skills

22 8. Dealing with others emotions requires insight into their own 9. Physicians are often invested in a relationship built on hope for cure 10. Patients and families may have unrealistic goals 11. Significant time constraints

23 Problems in Palliative Care Nursing Research Single and small-scale research Less collaboration with other professions Still evolving and requires a sustainability program that is supported by palliative nursing practice

24 Researchers challenge Multi-method approach define the sample Missing participants and data measurement of outcomes Understanding of the intervention comparing intervention Doing research that is ethically sensitive

25 THANK YOU