“The support groups have given me strength, they have helped me know how I can better relate to my children,” said one parent participating in Partners In Health/Zanmi Lasante’s “Tout timoun se moun” (All Children are People), a five-year old support program for Haitian families affected by HIV/AIDS. “In the exchange of ideas we’ve had I’ve come to realize that it is not only me who lives like this. The groups have helped me in how I relate to my children,” she continued.
A new study by PIH/ZL researchers and health care providers powerfully documents the transformative experiences of some “Tout timoun se moun” participants, who, like this parent, face stigma and other significant challenges while juggling the pressures of family life, and the demands of managing a chronic illness. Last year, PIH/ZL published preliminary research about the program in the journal AIDS Patient Care and STDs. And Father Eddy Eustache, Director of Psychosocial Services for Zanmi Lasante, presented some of PIH/ZL’s findings at the International AIDS Conference in Vienna in 2010.
The forthcoming article, “Psychosocial support intervention for HIV-affected families in Haiti: Implications for Programs and Policies for Orphans and Vulnerable Children” presents new data that quantifies the impact of psychosocial support groups on HIV-affected families in a low-income country, and may be the first published in a peer-reviewed journal to do so.
The paper is based on data collected from almost three hundred people (168 youth and 130 caregivers), at six Partners In Health-affiliated sites, who completed a baseline questionnaire about psychological symptoms, psychosocial functioning, social support, and HIV-related stigma prior to participating in the psychosocial support group. One year later, ninety-five percent of these families completed a comprehensive questionnaire, with PIH/ZL staff also interviewing participants to better assess their perspectives of the intervention, and researchers found a meaningful reduction in depressive symptoms and stigma, and a marked increase in social support.
“Reduction in depressive symptoms among HIV-positive patients may improve adherence, reduce morbidity, and increase survival,” said Mary Kay Smith Fawzi, an associate epidemiologist for Partners In Health and the Department of Global Health Equity at Brigham and Women’s Hospital, who was a co-principal investigator on the study. “A significant reduction in depressive symptoms, if sustained, can improve the prognosis of HIV disease in resource-limited settings,” said Smith Fawzi.
Until recently, most of the programming for families in the developing world affected by HIV/AIDS targeted orphans and vulnerable children, or “OVC.” (OVC are generally defined as young people who have been affected by the illness they have, or had, an HIV-positive caregiver or parent/s.) Given the devastating and multigenerational impact of the pandemic, these efforts are essential: UNICEF estimates that there are 16.6 million children who have been orphaned by HIV/AIDS, as of 2010.
But this approach to psychosocial support in the developing world dates back to the pre-antiretroviral (ART) era, before 2001, when programs focused on supporting “children who were abandoned, ill-cared for, or grieving,” according to the study. As access to these drugs for people living in the poor world has slowly begun to improve – due in part to the proven interventions of progressive, grassroots like organizations PIH/Zanmi Lasante in Haiti – the needs of patients and their families have also begun to change and evolve. For instance, in 2001 the World Bank estimated that there would be 35 million children orphaned by HIV/AIDS worldwide by 2010. Instead, there were 16.6 million in 2010, due in large part to greater access to better medicines.
Within PIH/ZL facilities in Haiti, where access to HIV/AIDS treatment was initiated in 1998, more caregivers and children now need support to cope with managing chronic illness. “Children affected by HIV often face significant uncertainty about their parent’s disease, having concerns about the recurrence of significant and life-threatening symptoms or premature death,” according to the PIH/ZL study. “Girls in particular may take on the role of caregiver in the household, caring for their ill parent or assuming greater responsibilities in supervising younger children in their family.” Not surprisingly, children living with parents with HIV disease may have symptoms of depression and anxiety, and are more likely to engage in “high-risk behavior related to problems with conduct, unprotected sex, and substance abuse.”
Likewise, caregivers living with HIV/AIDS reported feelings of hopelessness, worthlessness, and loneliness. Among HIV-positive people, depression has been shown to be associated with poor treatment adherence rates, increased progression of HIV, and mortality.
Many of these psychological symptoms – among children and adults – improved markedly after 12 months attending two times per month PIH/ZL-run psychosocial support groups. Said Smith Fawzi, ”Providers working with HIV-positive patients may consider a broader, family-focused approach that addresses the psychosocial dimensions of HIV, such as feelings of isolation, depression, anxiety, and HIV-related stigma. In particular, we observed that reductions in depressive symptoms provided an increased capacity of patients to face HIV-related stigma in a positive manner, gaining confidence to live positively with the disease.”
“I used to treat my children very badly,” said one parent who was interviewed by PIH/ZL. “I would hit them…and yell at them. But now, thanks to our good God, the support groups have brought a different feeling to me, and my children are now my friends because I treat them much better.”
And children reported benefiting from the groups in a number of ways. “The support groups did a lot for me. The transport money I received – my mother put together with hers – and helped me go to school…As a teenage girl, I learned how to protect myself and cope with things on my own and continue with school,” said another Tout timoun se moun participant.