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Not by Ourselves: The Essential Role of Family and Community in Maintaining Health

By David Fawcett, Ph.D., L.C.S.W.

February 12, 2013

In the modern world it can be remarkably easy to discover where you are. A simple tap on the screen of a smart phone or consultation with a car's GPS device instantly reports our location on the planet with almost absurd precision. Such effortless ability to locate ourselves in time and space can shroud the complications of maintaining emotional bearings in the more ambiguous, upside-down world of living with HIV. Those who are newly diagnosed, as well as long-term survivors, are buffeted by the powerful forces unleashed by living with or around HIV, and frequently find it challenging to maneuver this emotional realm.

Researchers are increasingly documenting the importance of social support in maintaining healthy resilience. While medications have altered the landscape of living and dying from the virus, it is increasingly clear that pharmacological interventions alone are not sufficient to achieve acceptable levels of linkage, entry and retention in care.

Psychosocial stressors, including inadequate support, can take a toll on those living with or affected by HIV. They result in denial and avoidance of testing, they affect treatment adherence, and they can push an emotional low point into a crushing depression. Perhaps most harmful, whether from stigma or other factors, individuals may be shunned by their families and communities and thus lose their vital support system. HIV can be characterized by social isolation. Those who cannot find a way to successfully develop a meaningful support network may find their health severely impacted.

I know from my interactions with countless patients that being seen and heard -- simply being socially connected -- can have a profound healing effect. Therefore, it is noteworthy that research findings reported at the 19th International AIDS Conference in July 2012 documented the significant healing role played by one's social context. Health is enhanced when we are surrounded by people who love us and when we, in turn, feel part of something larger than ourselves.

One such study, Collaborative HIV/AIDS Mental Health Project (CHAMP), presented by Susan Reif of the Center for Health Policies Inequalities and Research, looked at treatment barriers for co-occurring mental illness among persons living with HIV. Such disorders are highly prevalent, are associated with negative health outcomes and are often untreated (based on access to health care, stigma and a variety of other factors). This study of a population in North Carolina used a combination of in-home and community-based counseling. There were significant improvements over time in a number of standardized assessments, underscoring the benefit of mental health care that is both accessible and culturally appropriate. Further research will determine the relative effectiveness of the two interventions in this study: in-home versus community based care.

The power of supportive psychosocial care expressed in the family unit was the focus of a presentation by Lucia Knight (Care and support by households and extended families in the era of HIV treatment: Responses to HIV and AIDS in rural South Africa) about HIV care and support by households and families in rural South Africa. The aim was to assess the ability of black South African families to respond to HIV/AIDS and to determine the dynamics which support or inhibit this response. The findings documented the overall resilience of the families and their importance in providing an important safety net for those affected. Social norms such as family obligation and reciprocity enabled those needing assistance to acquire it while at the same time building social capital for the family. The study found, however, that such norms were frequently limited by conflicting obligations or lack of resources and should, therefore, not be taken for granted. Clearly, support of family systems, both in the U.S. and abroad, is a beneficial way to improve the care of those living with HIV.

Families were also the focus of a study on black MSM, a population with the highest incidence of HIV in the United States, reported by John Schneider (Family network proportion and HIV risk among Black men who have sex with men [BMSM]). Utilizing an egocentric network approach, these researchers determined the proportion of close social network members who were also family members. About 45% of respondents reported at least one close member of their network as family. Greater family involvement, especially of males, was associated with reduced risk behaviors. The study highlighted the need to better understand the role of brothers, fathers and other male family members of BMSM in HIV prevention efforts. Research is also underway to assess the role of family ("of origin" or "of choice") in supporting primary HIV care and treatment adherence of young BMSM.

The essential support of families and communities can benefit not just those living with the virus but those affected by it, as well. A study reported by REPSSI, the Regional Psychosocial Support Initiative (When time doesn't heal: childhood traumatic grief among orphans in rural Zambia), investigated factors that sustain or inhibit ongoing traumatic grief among orphans in sub-Saharan Africa. Factors one presumes might have a great impact, such as circumstances of the parent's (or parents') death, were not highly significant. What was most important was how the children were cared for in their families and communities following the death of their parent. Multiple sequential losses of a primary caregiver, within-household discrimination, a negative relationship with current caregiver, and daily stress and bullying were all found to be significant in predicting ongoing traumatic grief among children orphaned because of HIV. The study found that community-based initiatives played a critical role in allaying some of the debilitating mental health complications among these orphans.

Whether in the United States or abroad, among those living with the virus or those affected by it, the health-promoting effects of family and community are enormous. The healing potential of these connections is beginning to be documented and should be an essential component of ongoing HIV prevention and treatment interventions. In the end, self-esteem, self-respect and resilience can only be achieved when our efforts to stay physically and emotionally healthy are reflected back to us in actions of others and take place in a social context of encouragement and support.




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