Socio-cultural Issues as Barriers to Care of HIV-infected orphans in Southern Africa

1. Socio-cultural Issues as Barriers to Care of HIV-infected orphans in Southern Africa Seth Langsam, Fourth Year Medical Student, University of Cincinnati, United States of America Corinne Lehmann, MD, MEd Lisa Vaughn, PhD

2. Disclosures • We do not have any financial disclosures to report • We do not discuss use of “off-label” or experimental medications or medical equipment

3. Background- HIV and orphans • 14 million children lost 1 or 2 parents to AIDS in Sub-Saharan Africa • Now 2.1 million children living with HIV • Many of the HIV-infected children in Africa are orphans too-numbers are unknown • Not much has been published on HIV-infected orphans living in or cared by institutional or non-family care

4. Hypothesis • What are the barriers to HIV-infected orphan care in institutions? • Transportation • Training of health care team • Lack of funds to pay for medication or health care • Availability of appropriate medications for children • Large number of orphans • Stigma

5. Methods- Qualitative Study • 10 orphan care institutions from South Africa and Swaziland • Eligibility for participation included any institution/ residential care facility that was directly responsible for care of HIV-infected orphans • Structured digitally recorded interviews regarding barriers to care during 5 weeks in 2007

6. Methods- Qualitative Study • Study was approved by University of Cincinnati Institutional Review Board • All participants were de-identified prior to transcription • Verbatim transcripts independently reviewed by team • Broad conceptual themes coded and reviewed again, then • Salient themes verified by the team

7. Descriptions of Care Organizations Interviewed 5 combined purpose organizations

8. “Mother Run” House- 3 organizations

9. Neighborhood Care Points Need picture here

10. Results- Socio-cultural Barriers • Poverty • Denial/Stigma • Cultural Differences with Outsiders

11. Results: Theme 1- Poverty • -Poverty affects how the government, the local community and the local people deal with orphans • type of medical care delivery (10)‏ • overload of welfare systems (8)‏ • “ Caring for HIV positive individuals takes both time and money, living in extreme poverty like a lot of our country is doing makes meeting these two demands almost nearly impossible..” [B0019]

12. Theme 1 Poverty: HIV Care Delivery • -Government hospitals and ARV rollout centers: concerns of care quality (8)‏ • “The care given at the local government hospital is not good enough for our children...” • International Academic Medical Center Program- pediatric HIV care program in Swaziland- “good care and free”(5)‏ • Private Clinics: adequate quality of care but expensive (6)‏

13. Theme 1 Poverty: Inundated Social Welfare • Greater tendency/complacency for social workers to place HIV+ child in institution rather than place in the community • “... one of the barriers is also that social workers are overloaded. If the child is placed here with us, they are so relieved that the child is placed they just go on with the other 200 crises....” [A0032]

14. Results: Theme 2- Denial/stigma • “What is your perception of potential stigma faced by HIV positive orphans?” • Men and denial of HIV (3)‏ • Stigma leads to decreased rates of disclosure, and potential care (3)‏ • Stigma leads to social isolation (3)‏ • Fatalism regarding HIV diagnosis leads to decreased levels of treatment (3)‏

15. Theme 2 Denial/stigma: Men and Denial • Men particularly singled out as being in denial • -“When a child dies and is HIV +, the mother says please don’t tell the father because he doesn’t know he’s HIV+. That’s part of the culture…the men will either leave or abuse her if she knows she is positive... it’s quite a problem”. [A0032]

16. Theme 2 Denial/stigma: Stigma • Stigma leads to decreased rates of disclosure, and potential care • “They (parents) don’t want to get treatment for the children because people will know they are positive.... I think this is a big barrier. That is the reason why often these children are neglected at home because they don’t want people to know…so they don’t come and look for help.” [A0032]

17. Theme 2 Denial/stigma: Isolation • HIV leads to social isolation (shunning)‏ • -“If the people in the community know, they may shun these children…I mean they are not in a secure home before they become HIV positive, then they are even in less of a secure home afterwards. They are more likely to be abandoned than they were before.” [A0024D]

18. Theme 2 Denial/stigma: Fatalism • Fatalism regarding HIV diagnosis leads to decreased levels of treatment • “…One sits and wonders if the government haven’t done it on purpose because what were they going to do with all these orphans anyway. So, hey, let a few of them die and then we’ll carry on from there.” [B0033]

19. Results: Theme 3 – Cultural Differences • Conflict in abstinence based versus comprehensive sexual education (5)‏ • Mis-information about HIV infection (5)‏ • Conflicts in how to spend funding (2)‏ • Conflicts in programming: Western style orphanage versus African run mother house (2)‏

20. Theme 3 Cultural Differences: Sexual Education • “Obviously we spend a lot of time talking about HIV/ AIDS and sex-… because of our religious affiliation we highly stress abstinence; however as realists we know that we also need to teach about safe sex practices and we spend a large amount of time teaching all about the HIV/ AIDS virus including transmission…” [B0019]

21. Theme 3 Cultural Differences: HIV information and Distrust of Outsiders • “That (education) has to come from somebody in their community that they trust, that they can relate to, and who can explain it to them in a way that is non- threatening. Coming from a white person who is not totally familiar with the culture and probably never will be…it does no good for us to go and try to counsel. It has to come from somebody they trust.” [B0026]

22. Theme 3 Cultural Differences: Conflicts in Funding and Programming • “And if someone comes with money, they will want things done their way. He who pays the piper, plays the tune…” [A0019] • “ Adoption wise, no we haven’t got an adoption policy because we want to adopt within Swaziland more than people from outside coming in wanting to take children because Swazi’s need to be raised by Swazi’s. That is the culture.” [A0025]

23. Limitations of the Study • Convenience sample • Mixed populations of orphan care institutions- “mother run” and “care points” • Initial qualitative study

24. Conclusions- for Care • While many advances in pediatric HIV care, problems still exist in the delivery of that care to HIV-infected orphans in Southern Africa • Barriers to care have unrecognized roots in social and cultural mores that can be more significant than logistical issues of medical care delivery • Must look beyond the medical realm to solve the problems of orphan care and pediatric HIV treatment in Africa

25. Conclusions- for Outsiders • Give Africans the support tools they need to overcome the barrier of poverty and sustain themselves • Acknowledge areas of conflict between funding program mandates and local programming needs • Recognize the need for the traditional African family unit in raising children • Give “ownership” of the orphans to local Africans

26. Acknowledgements • University of Cincinnati College of Medicine Department of Pediatrics Scholars Program for stipend support • Ryan Buchholz, MD, and Sara McCune, MD, University of Cincinnati Medicine-Pediatrics residents for technical medical support in Africa • Meg Harman for transcription editing and manuscript preparation

28. THANK YOU!

29. PEPFAR Strategy December 2009 • Sustainable programs must be country-owned and country-driven • Sustainable programs must address HIV/AIDS within a broader health and development context • Sustainable programs must build upon our strengths and increase efficiencies www.pepfar.gov Accessed May 26, 2010

30. UNAIDS Outcome Framework :Selected Priority Areas 2009-2011 • We can ensure that people living with HIV receive treatment • We can remove punitive laws, policies, practices, stigma and discrimination that block effective responses to AIDS • We can stop violence against women and girls • We can empower young people to protect themselves from HIV • We can enhance social protection for people affected by HIV

31. Definition of Orphans • Child losing a parent who died • Single/maternal/paternal orphan- 1 parent died • Double orphan- two parents died • “Total/Triple orphan”- two parents died and no extended family to take the child in • Various terms exist in African culture to describe the above situations

32. Several organizations talked about the challenges of providing appropriate education for their HIV infected orphans while staying in line with guidelines of the funding program administration. 5 programs commented on abstinence versus comprehensive sexual education for their orphans. This comment from one program particularly encapsulated the reality of abstinence based sexual education teaching in the midst of an overwhelming crisis. • 4 of the 10 programs had abstinence only based sexual education offered. These leaders did not identify a conflict with that type of sexual education. 3 programs were funded completely by religious-affliated organizations. 1 program did not offer sexual education due to age range of children cared for (but was identified as Christian) 5 programs offered combination approaches, but the core theme of the teaching of most was abstinence. Another example is a religious affliated program that taught abstinence on site, but brought in a local teacher who gave comprehensive sex ed. Another program referred out teens to a family planning clinic if the child requested it.