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Article Excerpt
Family therapists working in medical contexts often struggle to find a common language for communication with medical staff about the importance of family support. HIV positive youth are a group who have particular need for family support to help improve medication adherence, promote more open and positive communication, and decrease substance use and risk behaviors. In this paper, the authors retrospectively examined the levels of family support in a sample of 50 North American urban minority youth coping with HIV in an HIV/AIDs pediatric clinic from 2003 to 2007 at 2 time points (pre- and postdiagnosis) and began developing a clinician-rated family support tool. The authors highlight the use of a common clinician-rated family support tool for medical and mental health staff to discuss patients and their families. Results suggest that the family support youth were receiving fell between mixed and unsupportive levels both at pre- and postdiagnosis. Through the use of a case example the authors elaborate on how this family support tool aided in building a collaborative relationship with a focus on garnering family support for youth coping with the diagnosis of HIV.
Keywords: collaborative care, HIV youth, family support
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HIV continues to spread globally (e.g., Africa, Asia, Eastern Europe, Central Asia, Caribbean, Latin America) and in the United States (United Nations Programme on HIV/AIDS [UNAIDS], 2008). In 2007, there were 2.7 million new HIV infections and young people (ages 15 to 24 years) accounted for half of all new HIV infections worldwide (UNAIDS, 2008). In the United States ethnic minority youth (ages 13 to 24), are increasingly at risk of HIV infection due to their sexual behavior (Centers for Disease Control and Prevention [CDC], 2005). The epidemic has changed, however, from treating an acute illness likely to result in imminent death in the 1980s and early 1990s to now treating a chronic, yet manageable illness with the advent of highly active antiretroviral therapies (HAART; Lightfoot, Rotheram-Borus, & Tevendale, 2007). With the introduction of HAART, adherence to medication has been especially critical, as 95% adherence is recommended to prevent the development of resistant viruses and to achieve stable viral suppression (CDC, 2005; Song, Lee, Rotheram-Borus & Svvendeman, 2006).
Although intrapersonal and interpersonal factors affecting treatment adherence in young children and adults' coping with HIV has received a great deal of attention, there is a dearth of research on the factors affecting youth adherence to HIV treatment, in particular the role of family support (Hosek, Harper, & Rocco, 2005; Lyon et al., 2003; Rotheram-Borus, Flannery, Rice, & Lester, 2005). To begin bridging this gap between the role of family support and youth coping with HIV, we began piloting a clinician-rated family support tool (Johnson, 1998, 2007) to collaboratively discuss and target the level of family support and to improve communication between the mental health and the medical team at our HIV pediatric clinic. In addition, we conducted a retrospective chart review of 50 newly diagnosed North American ethnic minority HIV+ youth to examine salient demographic variables and the levels of perceived family support both before and after disclosure of an HIV diagnosis to family members.
HIV YOUTH, TREATMENT ADHERENCE, AND FAMILY SUPPORT
Although, HIV/AIDS is diagnosed in an individual, the entire family and community are affected (Pivnick & Villegas, 2000; Rotheram-Borus, Lee, Gwadz, & Draimin, 2001). "As the epidemic has unfolded, the early focus on individuals has become inadequate: families live with HIV, not just individuals ... yet intervention models consistently focus on medical and psychosocial interventions for individuals" (Rotheram-Borus et al., 2005, p. 978). Families living with HIV in North America and globally often face discrimination and fears of being ostracized by the community, for example, in Nigeria when one member of the family becomes HIV+ the whole family is called an "AIDS" family by the other members of the village (Alubo, Zwandor, Jolayemi, & Omudu, 2002). Families fear losing face in China and in Thailand if the HIV status of a family member is disclosed, and given the cultural significance of family oriented societies like China and Thailand, family members can either be a salient source of social support or stigma for patients coping with HIV (e.g., Songwathana & Manderson, 2001).
Families all over the world face psychological and interpersonal issues as they adapt to the diagnosis and long-term treatment of HIV/AIDS. Many patients in North America and globally experience trauma and fears about the acute stage of the illness returning, grief for the loss of one's physical health, and isolation and rejection from other family members, friends, and the larger community (e.g., Alubo et al., 2002; Castro, Orozco, Aggleton, Eroza, & Hernandez, 1998; Li, Wu, Sun, Cui, & Jia, 2006; Songwathana & Manderson, 2001). In addition, family members coping with HIV/AIDS may experience depression, loneliness, and fear, due to handling the stigma of an often perceived "immoral" disease by their families, communities, and larger society and are in need of family and social support to maintain treatment adherence to antiretroviral medications (Goode, McMaugh, Crisp, Wales, & Ziegler, 2003; Li et al., 2006; Lyon et al., 2003; Rao, Kekwalestswe, Hosek, Martinez, & Rodriguez, 2007).
Poor treatment adherence to the HAART regimen has many more negative physical consequences for HIV as compared to other adolescent illnesses (e.g., Jessor, 1993; Lightfoot et al., 2007). Poor adherence to HAART is the second strongest predictor of progression to AIDS and death, after CD4 count (Belzer, Slonimsky, & Tucker, 1998). For most patients, near-perfect (>95%) adherence is necessary to achieve full and durable viral suppression (Naar-King et al., 2006; Rao et al., 2007). In practice, this degree of adherence requires a patient on a twice-daily regimen not to miss or delay more than three doses of antiretroviral medications per month. This degree of adherence is far greater than that commonly associated with other chronic diseases and is difficult for most patients to maintain over the course of a lifelong illness (Osterberg & Blaschke, 2005).
Studies of other types of illnesses (e.g., diabetes, heart disease, seizure disorders) have explored myriad predictors of nonadherence to medical regimens (Byrne, Honig, Jurgau, Heffernan, & Collins Donahue, 2002; DiMatteo, Giordani, Lepper, & Croghan, 2002; Peterson, Takiya, & Finley, 2003). Demographic variables, like income, education, gender, race, and ethnicity do not consistently predict the level of adherence to treatment (Osterberg & Blashke, 2005). The salient factors that seem to best predict adherence are those variables that are not routinely assessed or fully considered in medical clinics, namely social and family support, patient and caregiver beliefs about the efficacy of the treatment, and patients perceptions of the severity of their disease (Miller & Hays, 2000).
Social and family support has received a lot of attention in the stress and coping literature (e.g., Cohen & Syme, 1985; Cohen & Wills, 1985) and has been defined as the support available to a person or community through social ties to other individuals, groups, or community. The link between health care practices and...
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