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

1999 1999

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Abstract (summary)

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' 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.

Indexing (details)

Families & family life;
Personal relationships;
Public health;
Social psychology
0628: Families & family life
0628: Personal relationships
0628: Sociology
0573: Public health
0451: Social psychology
Identifier / keyword
Health and environmental sciences; Social sciences; Psychology; Care; Caregiving; HIV; Immune deficiency; Social support
The meaning of care: Social support, informal caregiving and HIV disease
Fraser, Michael Robert
Number of pages
Publication year
Degree date
School code
DAI-A 60/05, Dissertation Abstracts International
Place of publication
Ann Arbor
Country of publication
United States
9780599328877, 0599328878
Tessler, Richard C.
University of Massachusetts Amherst
University location
United States -- Massachusetts
Source type
Dissertations & Theses
Document type
Dissertation/thesis number
ProQuest document ID
Database copyright ProQuest LLC; ProQuest does not claim copyright in the individual underlying works.
Document URL
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