Communities Coping with Children Living with HIV and AIDS Bridging the Gap between the Ideal and the Reality

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1 Communities Coping with Children Living with HIV and AIDS Bridging the Gap between the Ideal and the Reality Geoff Foster, (Ministry of Health, Zimbabwe) Rose Gunda, (Southern African AIDS Trust) Anna Miller, (Elizabeth Glaser Pediatric AIDS Foundation)

2 Background Based on findings from a regional workshop, including both paediatric ART and community care programmes Held in Harare, 8-12 th November 2004; participants from 9 countries; sponsored by SAT with EGPAF involvement Intended as a ground breaking workshop to define how community are coping with CLHA (NB. NOT Paediatric AIDS or Children infected with HIV )

3 Workshop Format Plenary presentations, group work and powerful testimonies from parents African-specific with Africa-based participants Two tracks community and medical Examining the ideal and the reality and how to bridge the gap between the two

4 Number of CLHA in sub-saharan African countries Country (% of children <15 yrs CLHA) Swaziland (4.1) Botswana (3.8) Lesotho (2.7) Zimbabwe (2.1) Namibia (1.9) Zambia (1.7) South Africa (1.6) Malawi (1.6) C. African Rep. (1.3) Mozambique (1.2) Burundi (0.9) Tanzania (0.9) Kenya (0.7) Uganda (0.7) Cameroon (0.7) Rwanda (0.6) Cote D'Ivoire (0.6) Nigeria (0.5) Burkina Faso (0.5) Angola (0.4) Ethiopia (0.4) Nr children (0-14) living with HIV/AIDS ('000) Source: UNAIDS, 2004; UNICEF, 2003

5 Change in number of CLHA in African countries, Country (% of children <15 yr CLHA) Swaziland (4.1) Botswana (3.8) Lesotho (2.7) Zimbabwe (2.1) Namibia (1.9) Zambia (1.7) South Africa (1.6) Malawi (1.6) C. African Rep. (1.3) Mozambique (1.2) Burundi (0.9) Tanzania (0.9) Kenya (0.7) Uganda (0.7) Cameroon (0.7) Rwanda (0.6) Cote D'Ivoire (0.6) Nigeria (0.5) Burkina Faso (0.5) Angola (0.4) Ethiopia (0.4) -15% -10% -5% 0% 5% 10% 15% 20% 25% Change in number of children living with HIV/AIDS, Source: UNAIDS, 2004; UNICEF, 2003

6 Critical Issues around CLHA (1) Neglect of right to life of CLHA Mean survival time for CLHA in Africa 2-3 years compared to 8-10 years pre-art in the West Discrimination and stigma (at all levels and in all settings) prevent addressing the issues for CLHA Prevailing attitude concerning CLHA of They re just going to die anyway CLHA die mostly from treatable non-aids infections and malnutrition CLHA are not included in many ART programmes, and are overlooked in community care programmes

7 Source WHO

8 Critical issues around CLHA (2) Lack of model programmes supporting CLHA Lack of model programmes that provide both care and treatment through the continuum of care (COC) for CLHA Model = replicable and sustainable; COC implies institution and community linkage The continuum of care is: poor within the health delivery system, inadequate into the community poorly defined within the community

9 Source WHO

10 Continuum of care for CLHA Families/caretakers Health Facilities (HCWs & Community workers) Local leaders CLHA Traditional Leaders Schools Community Development Workers & Extension Workers Entry points ASOs: Home care and OVC programmes CBOs (volunteers) NGOs (volunteers) FBOs

11 Entry points to COC are community and institutional levels Responsibility of communities, families and health workers to have clinical suspicion of HIV infection, and discuss and refer appropriately. For programming purposes: OVC programme volunteers CHBC programme volunteers Traditional healers and midwives Schools Health service delivery points (including community based Development & Health Workers) Responsibility of health workers and health facilities to make laboratory/confirmatory diagnosis of HIV

12 Comprehensive Care Package for CLHA Basic medical care Prophylaxis against OI Early diagnosis and appropriate management of HIV and OI (including ARVs & complementary traditional treatment) Good nutrition necessary for appropriate growth and development Social support (meeting needs of child food, clothing, shelter, love) Spiritual & Psychosocial support (SPSS) Competent caretakers with best interests of child at heart Caring for carers Maintaining schooling Education and information around illness Rehabilitation services Palliative care services when the time comes

13 Critical Issues around CLHA (3) Comprehensive care and treatment for CLHA Care and treatment for CLHA is much more than just ART Provision of comprehensive care package should combine to allow the child the right to be a child and to fulfill their individual potential How to measure success in this provision of care? Need wider definition of indicators than just number of children on ARV treatment

14 Critical Issues around CLHA (3) Ambivalence towards ARV treatment roll out: Life saving and life enhancing health benefit Opportunity to reverse stigma and discrimination ART as a platform for global equity and rights discussions BUT May disempower non-arv treatment and care of CLHA and distort the balance between care and treatment May reinforce the CLHA are going to die anyway viewpoint by discouraging treatment of CLHA that are not on ART programmes Distorts development priorities in resource poor settings

15 Critical Issues around CLHA (4) Lack of emphasis on SPSS needs of CLHA Stigma exists for CLHA it is very real Many barriers to care through stigma and discrimination and lack of family communication Disclosure issues of CLHA in non-art settings largely overlooked Few support groups for CLHA and guardians of CLHA in SSA SPSS needs of school-age and adolescent CLHA virtually ignored