Terms of reference Three (3) Country Assessment of Palliative Care Needs in children

Transcription

1 Summary Terms of reference Three (3) Country Assessment of Palliative Care Needs in children A major challenge in ensuring that palliative care for children is reflected in domestic and global health plans and budgets is the difficulty in estimating the number of children requiring palliative care, including children affected by AIDS, as well as the availability of key services and gaps in the response. The purpose of this consultancy is to; a) Contribute to the investment case for palliative care in children, in particular those living with HIV, by establishing both the scale of need and coverage of palliative care services in a limited number of countries. b) Develop a methodology to establish palliative care needs in children to support more effective planning and responses. The consultant will work with UNICEF and the International Children s Palliative Care Network to undertake a rapid assessment of palliative care needs for children and their families, particularly those affected by HIV and AIDS in 3 countries. This country level analysis will inform the future priorities of the UN led working group on social protection, care and support and inform global and national investment decisions regarding care and support of children living with HIV and AIDS. Outputs of this project will include Rapid assessment of three countries, identifying the palliative care needs of children and their families Short advocacy paper highlighting key needs and gaps in palliative care for children, including those affected by AIDS Methodology for further country-level assessments Power-point to be presented with the UN social protection, care and support working group to draw attention to critical care and needs Background Palliative care is a critical necessity for children with life-threatening, life-limiting and chronic conditions and disabilities, and their families. It should be available from the time of diagnosis, and continue throughout the trajectory of the condition, alongside treatment aimed at curing, modifying or controlling the disease. Where the condition becomes progressive and incurable, palliative care will become the major form of care and is a basic human right.

2 Palliative care is an organized method of delivering competent and multi-disciplinary compassionate care, and is a combination of pain and symptom management, alongside emotional, spiritual and social care and support. Palliative care continues into the bereavement period, helping children and families deal with grief and loss. The goal of palliative care for children is to promote the best possible quality of life, support optimal childhood development, and relieve suffering. According to the African Palliative Care Association, children s palliative care is neglected especially in light of the HIV and AIDS epidemic where the need is great for support to sick children as well as to help them cope with caring for and losing sick parents. The Association notes that children s needs are different from those of adults, especially when it comes to being able to express themselves and make decisions. Children at different ages and stages of development have differing needs, many of them do not have the skills to explain their pain, and are usually not legally able to consent to certain medical treatments. Disclosing to children also requires a different approach to adult disclosure and there is often restricted access to paediatric drugs. In many resource-poor contexts, poverty means that parents have limited choices in regards to their children and that means making tough decisions regarding treatment and care 1. Growing access to Antiretroviral Treatment, Prevention of mother to child transmission services and Paediatric treatment services has led to some shifts in type of palliative care services needed, but globally about 3.4 million children under the age of 15 years were still living with HIV in 2011, 91% of them in sub-saharan Africa, and an estimated 230,000 children died in that same year of AIDS. There is also still a large coverage gap for HIV treatment for children with only an estimated 562,000 children receiving ART in 2011 which accounts for around 28% of children in need. 2 Whilst palliative care needs result from many different conditions and anecdotally the need appears to be great, there is currently no data available that reflects the scale of that need. Without an estimate of need, it is difficult to advocate for expanded palliative care services. The absence of data is even more significant when it comes to palliative care for children. The most comprehensive set of data that is potentially available, and can be used to provide a justification for need comes from HIV and AIDS data, especially in sub-saharan Africa where there has been a growing demand for palliative care services as a result of the burden of HIV on families and communities, and where this has galvanised the creation of palliative care associations and initiatives. In South Africa, for example, over 95% of children cared for by hospices are living with HIV however it is likely that there is also a high unmet need for palliative care for children with other conditions. HIV is likely to make a significant contribution to the burden of palliative care needs in children for the foreseeable future. At the same time however, there appears to be a misconception that with growing treatment access palliative care services including end of life care, home based care and support is less important in global funding priorities and there is the danger that important 1 Taken from the African Palliative Care Association 2 UNAIDS (2012) Together we will end AIDS

3 palliative care activities will be de-prioritised. In order to understand the unfinished agenda for palliative care for children and the shifting needs with the scale up of ART, an assessment of present and projected palliative care needs is required. Palliative care services for children have been slower to develop than adult palliative care services. Fewer health professionals are trained in palliative care for children and facilities for training in this field are absent in most countries. A systematic review to map children s palliative care services worldwide carried out by Knapp et al, 3 found there to be 78 countries where there were no known children s palliative care activity, 41 countries where there was evidence of some capacity building in children s palliative care, 80 countries with localised provision of services and 35 where the services were approaching integration with mainstream service providers. In a country such as India, with 44 million children, there are presently only four established palliative care services for children with some further development in the Maharashtra region. Establishing the need for CPC will not only help in the on-going development of CPC services but will also provide a powerful advocacy tool for CPC advocates globally. The major gaps in provision are in the developing world, which carries the major burden of disease and poverty. HIV funding has significantly increased palliative care needs in Africa and whilst global HIV funding has made a significant contribution to the scale up of palliative care services Africa is the continent with the lowest number of countries showing any children s palliative care development. Education, funding, policies and access to palliative care drugs, including opioids for moderate to severe pain, lay the foundation for the provision of palliative care for children. In recent years there have been growing concerns raised by agencies working on palliative care about the lack of access to pain relief for children and adults, possibly due to shifting funding in global donor priorities including HIV funding priorities. A survey of available education carried out in 2011 by the ICPCN also showed that worldwide there are few formal educational programmes and opportunities for professionals to develop to specialist level 4. Effective palliative care services also require community out-reach through community based care givers, both government and civil society. Truly comprehensive care and support of children in need of palliative care is rare and critical elements of support for example pain relief and psychosocial support to families is limited. Many organizations providing palliative care through home based care programmes are dependent on networks of volunteers many of whom are untrained. It is important to find out from networks incountry providing palliative care where are the greatest areas of unmet need and where they see the greatest challenges in their work. 3 Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, Hain R and Marston J Pediatric Palliative Care Provision Around the World: A Systematic Review. Pediatric, Blood and Cancer. 56 (7), 1 July. Article first published online: 17 Mar 2011, DOI: /pbc Downing J, Ling J (2012) Education in children s palliative care across Europe and internationally. International Journal of Palliative Nursing 18(3);

4 Scope of the assessment UNICEF and ICPN would like to contract a consultant for a short-term research project to identify children s palliative care needs and critical funding gaps, with a focus on palliative care needs of children, including those affected by AIDS in three countries. Countries will be prioritised on the basis of having a high prevalence of HIV infection, effective national hospice and palliative care associations, and availability of data on certain life-limiting, chronic and life-threatening conditions. UNICEF and ICPCN have identified Zimbabwe, Zambia, Uganda, Kenya, Malawi and South Africa as potential countries for this analysis and from this list 3 countries will be prioritised in the inception phase. Proposed approach This study will be undertaken in several phases, and will employ a multi-methods approach, including a desk review, quantitative and qualitative data collection. i) Inception phase. The Consultant will work closely with UNICEF and ICPCN to establish a small working group from the social protection, care and support stakeholders to review and where necessary revise the methodology and ensure that the consultant is aware of and has access to main sources of global and country level data. ii) In consultation with the working group the consultant will develop a methodology to estimate the numbers of children requiring palliative care and the range of conditions requiring palliative care, as well as the extent to which HIV is contributing to these palliative care needs. Work has already been undertaken on this e.g. through the development of a dictionary of life-limiting conditions in Wales by Hain et al 5 based on the ICD10 codes. iii) Identification of the number of children and families needing palliative care in the 3 countries. Having identified the key conditions globally in children that require palliative care globally, the consultant will identify the number of children in each of the 3 countries requiring palliative care. This will be based around the availability of existing morbidity and mortality statistics. Data sources include WHO, UNICEF, UNAIDS, Surveillance centres, GLOBOCAN, International/National disease specific organisations e.g. the MS Society, Rare diseases UK etc. A more detailed methodology will be established in the inception phase. iv) In discussions with the advisory group and national palliative care associations the consultant will focus on a small number of critical dimensions of service delivery for an effective palliative care response which can be assessed at national level (for example) to be assessed at a country level. The consultant will work closely with national palliative care associations to collate this data and if required will visit the countries to provide support in this task. These could include; o national palliative care policies in place which respond to the needs of children, 5 Hain R, Devins M, Hastings R and Noyes J. Life-limiting conditions among children in Wales: use of a Dictionary towards defining service needs. Archives of Disease in Childhood.

5 o existence national body providing oversight and standards of care, o availability of trained palliative care workers at a national and community level o availability of pain relief o psychosocial support o availability of universal precaution measures v) To complement the more quantitative analysis above, the consultant will undertake qualitative analysis through key informant interviews which will be held with key personnel in governments, national associations, PLHIV networks and other relevant organisations to confirm the quantitative data, and identify gaps in the provision of services and perceptions regarding changing needs and funding trends over the last 10 years and projected needs and gaps. In-country information will be facilitated through Palliative Care associations and networks. vi) In the three priority countries the consultant will identify and where possible quantify, key unmet need i.e. the gap between total palliative care need of children and their families and number of children and families receiving palliative care including unmet needs of children living with HIV. This will require the close involvement of national associations who will be able to map local service provision, which can be compared to existing mapping of services done by Knapp et al 6 and the ICPCN 7. vii) The consultant will develop a draft report and presentation prior to the dissemination meeting which will be reviewed and finalized a global dissemination event (most likely in Geneva or New York) vii) Dissemination. The consultant will work closely with palliative care associations and other key national stakeholders to effectively disseminate findings from the study. At the global level, the consultant will present findings at the Social Protection, Care and Support Working Group representing key agencies (UN, civil society, donors) working on care and support.. The findings of the study will be shared with this group in a meeting held in 2013 with discussions on how to take this agenda forward. UNICEF and other UN co-sponsors will support the core costs of such a meeting as well as funding a small number of participants to attend from palliative care networks. Outputs The following outputs are expected from the study: A comprehensive report identifying o The level need for broad palliative care services for children in three countries o the extent to which HIV is contributing to palliative care needs in 3 countries 6 Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, Hain R and Marston J Pediatric Palliative Care Provision Around the World: A Systematic Review. Pediatric, Blood and Cancer. 56 (7), 1 July. Article first published online: 17 Mar 2011, DOI: /pbc

6 o Stakeholder perceptions regarding palliative care priorities and funding gaps in national responses. Based on the above assessment develop a methodology that can be used to identify palliative care needs in other countries to inform national investment frameworks and HIV and national health plans and budgets. A short advocacy piece based on the study that can be used in global advocacy efforts on palliative care 4.5 Management and co-ordination of the grant UNICEF will manage this initiative in close collaboration with ICPCN. Both UNICEF and ICPCN will be involved in the selection of the consultant and provide oversight of the research. ICPCN will provide country level support to the consultant and establish linkages with relevant palliative care networks and support the consultant in obtaining country level data, ICPCN will also facilitate the dissemination of the report at the country level. UNICEF through its role as co-convener of the UN-led social protection, care and support working group will ensure input from and dissemination within the larger working group and convene a meeting (possibly in February 2013 when the research can be presented to UN and other partners). Provisional time line (to be revised after inception phase) Consultant contracted End October 2012 Research methodology agreed Mid November Country level data collection Mid November - Mid-January 2013 Initial dissemination of findings February 2013 Final report presented April 2013 Key competencies required Advanced degree in public health and or epidemiology. Good qualitative and quantitative research skills and analysis AT least 8 years experience including significant experience working in the area of palliative care and or HIV Demonstrated understanding of palliative care needs in children Understanding of importance of social and economic care and support for children living with HIV. Significant experience of working in sub-saharan Africa on palliative care Excellent written skills for a variety of technical and non-technical audiences

7 Good inter-personal skills and ability to work with range of government, UN and civil society development partners Indicative number of days The duration of this consultancy will be between days from mid-october 2012 until end April The consultant can work from any location globally but should be able to, if required, to travel to the three focus countries in sub-saharan Africa and attend dissemination meetings in the USA or Europe. How to Apply: Qualified candidates are requested to submit a cover letter, CV and signed P11 form (which can be downloaded from our website at to pdconsultants@unicef.org with subject line Country Assessment of Palliative Care Needs in children by 5 October 2012, 5:00PM EST. Please indicate your ability, availability and daily rate to undertake the terms of reference above. Applications submitted without a daily (or monthly) rate will not be considered.

8 The following conditions of service apply to all individual consultants: 1. LEGAL STATUS Individuals engaged under a consultant contract serve in a personal capacity and not as representatives of a Government or of any other authority external to the United Nations. They are neither staff members under the Staff Regulations of the United Nations and UNICEF policies and procedures nor officials for the purpose of the Convention of 13 February 1946 on the privileges and immunities of the United Nations. Consultants may, however, be given the status of experts on mission in the sense of Section 22 of Article VI of the Convention. If they are required to travel on behalf of the United Nations, they may be given a United Nations certification in accordance with Section 26 of Article VII of the Convention. 2. OBLIGATIONS Consultants shall have the duty to respect the impartiality and independence of the United Nations and shall neither seek nor accept instructions regarding the services to be performed for UNICEF from any Government or from any authority external to the United Nations. During their period of service for UNICEF, consultants shall refrain from any conduct that would adversely reflect on the United Nations or UNICEF and shall not engage in any activity that is incompatible with the discharge of their duties with the Organization. Consultants are required to exercise the utmost discretion in all matters of official business of the Organization. In particular, but without limiting the foregoing, consultants are expected to conduct themselves in a manner consistent with the Standards of Conduct in the International Civil Service. Consultants are to comply with the UNICEF Standards of Electronic Conduct and the requirements set forth in the Secretary General s Bulletin on Special Measures for Protection from Sexual Exploitation and Sexual Abuse, both of which are incorporated by reference into the contract between the consultants and UNICEF. Unless otherwise authorized by the appropriate official in the office concerned, consultants shall not communicate at any time to the media or to any institution, person, Government or other authority external to UNICEF any information that has not been made public and which has become known to them by reason of their association with the United Nations. The consultant may not use such information without the written authorization of UNICEF. Nor shall the consultant use such information for private advantage. These obligations do not lapse upon cessation of service with UNICEF. 3. TITLE RIGHTS UNICEF shall be entitled to all property rights, including but not limited to patents, copyrights and trademarks, with regard to material which bears a direct relation to, or is made in consequence of, the services provided to the Organization by the consultant. At the request of UNICEF, the consultant shall assist in securing such property rights and transferring them to the Organization in compliance with the requirements of the applicable law. 4. TRAVEL If consultants are required by UNICEF to travel beyond commuting distance from their usual place of residence, such travel at the expense of UNICEF shall be governed by conditions equivalent to the relevant provisions of the 100 series of the United Nations Staff Rules (Chapter VII) and relevant UNICEF policies and procedures. Travel by air by the most direct and economical route is the normal mode for travel at the expense of UNICEF. Such travel will be by business class if the journey is nine hours or longer, and by economy class if the journey is less than nine hours, and first class by rail. 5. MEDICAL CLEARANCE Consultants expected to work in any office of the Organization shall be required to submit a statement of good health prior to commencement of work and to take full responsibility for the accuracy of that statement, including confirmation that they have been fully informed regarding inoculations required for the country or countries to which travel is authorized.

9 6. INSURANCE Consultants are fully responsible for arranging, at their own expense, such life, health and other forms of insurance covering the period of their services on behalf of UNICEF as they consider appropriate. Consultants are not eligible to participate in the life or health insurance schemes available to United Nations staff members. The responsibility of the United Nations and UNICEF is limited solely to the payment of compensation under the conditions described in paragraph 7 below. 7. SERVICE INCURRED DEATH, INJURY OR ILLNESS Consultants who are authorized to travel at UNICEF s expense or who are required under the contract to perform their services in a United Nations or UNICEF office, or their dependants as appropriate, shall be entitled in the event of death, injury or illness attributable to the performance of services on behalf of UNICEF while in travel status or while working in an office of the Organization on official UNICEF business to compensation equivalent to the compensation which, under Appendix D to the United Nations Staff Rules (ST/SGB/Staff Rules/Appendix D/Rev.1 and Amend.1), would be payable to a staff member at step V of the First Officer (P-4) level of the Professional category. 8. ARBITRATION Any dispute arising out of or, in connexion with, this contract shall, if attempts at settlement by negotiation have failed, be submitted to arbitration in New York by a single arbitrator agreed to by both parties. Should the parties be unable to agree on a single arbitrator within thirty days of the request for arbitration, then each party shall proceed to appoint one arbitrator and the two arbitrators thus appointed shall agree on a third. Failing such agreement, either party may request the appointment of the third arbitrator by the President of the United Nations Administrative Tribunal. The decision rendered in the arbitration shall constitute final adjudication of the dispute. 9. TERMINATION OF CONTRACT This contract may be terminated by either party before the expiry date of the contract by giving notice in writing to the other party. The period of notice shall be five days in the case of contracts for a total period of less than two months and fourteen days in the case of contracts for a longer period; provided however that in the event of termination on the grounds of misconduct by the consultant, UNICEF shall be entitled to terminate the contract without notice. In the event of the contract being terminated prior to its due expiry date in this way, the consultant shall be compensated on a pro rata basis for no more than the actual amount of work performed to the satisfaction of UNICEF. Additional costs incurred by the United Nations resulting from the termination of the contract by the consultant may be withheld from any amount otherwise due to the consultant from UNICEF. 10. TAXATION The United Nations and UNICEF undertake no liability for taxes, duty or other contribution payable by the consultant on payments made under this contract. No statement of earnings will be issued by the United Nations or UNICEF to the consultant.