The meaning of care: Social support, informal caregiving and HIV disease

This study explores the meaning of informal caregiving for individuals living with HIV disease. As the number of individuals living with HIV disease continues to increase, there is a need for research on both the structure of caregiving networks and the meaning these networks have for individuals living with chronic illness. This study is continuous with prior research on social support and the illness experience, but departs from past work by addressing both the objective features of social support relationships and the way that they are subjectively interpreted by people living with HIV disease. Fifty-four (n = 54) individuals living with HIV disease participated in in-depth, qualitative interviews (31 women, 23 men). Participants were recruited from local AIDS service organizations and healthcare facilities in Western New England. Interview data were analyzed using cluster analysis and content analysis techniques. Respondents\u27 informal caregiving networks are summarized using five categories developed using cluster analysis. Content analysis of interview transcriptions illustrate the diverse way respondents interpreted the care they received from network members and the way in which their illness experience was shaped by the different contexts in which they received care. The way in which caregiving networks and respondents interpretations of them varied by gender, race and ethnicity, sexual identity and other self-identifications is discussed. This research furthers the literature on social support and chronic illness. As an exploratory project, the aim of the research was to describe how individuals living with HIV disease make sense of the care they do and do not receive from family members, friends and other informal caregivers. This study contributes to the literature on social support and HIV disease by focusing on low-income individuals, living in small towns and cities and two urban areas that have not been the focus of a great deal of HIV/AIDS research. The results of this study can be used to better understand and strengthen existing relationships within social support networks. This research also has direct implications for both formal and informal caregivers and programs and activities to support them