Abstract #167  -  Families in HIV/AIDS Care: Understanding vulnerabilities and resilience across cultures
Authors:   Presenting Author:   Dr George Palattiyil - University of Strathclyde
Additional Authors:
Aim: HIV/AIDS remains a complex and challenging issue of our times. While advances in treatment have enabled people with HIV/AIDS to live longer, caring for them remains onerous for families. Family carers represent an important resource in the global struggle to cope with HIV/AIDS, but little research has been done to understand their circumstances. In their pursuit to care, these families experience threats to their physical, psychological, social and economic well-being. Despite these vulnerabilities, they continue to care for their members with HIV/AIDS, that no one else in their communities can or will provide. Anecdotal evidence suggest that families struggle and survive in these circumstances, but there remains a need to construct a theoretical picture of the ways in which they develop resilience in the context of HIV/AIDS care. Against this backdrop, this study aimed to develop a deeper understanding of the vulnerabilities faced by families in HIV/AIDS care and the ways in which they find the strength to continue to care for their family member.
Method / Issue: This research investigated the experiences of family caregivers of persons living with HIV/AIDS across two contexts of development – Kerala (India) and Scotland (UK). The study was exploratory, cross-national, and used grounded theory to explore family carers’ experiences. Through purposive sampling, 28 respondents were interviewed: the majority were female, accounting for 74% of the Kerala sample and 80% in Scotland. Interview transcripts were analysed to develop themes that captured the meaning of their experiences.
Results / Comments: The results indicated that families from both contexts experienced significant vulnerabilities. The families in Kerala experienced poverty, stigmatization, discrimination, lack of support networks and inadequate healthcare facilities. While the families in Scotland shared some of these experiences at a lesser degree, their dominant experiences centred on caregiving stress, limited support, role stress, difficulty finding and maintaining a job, and lack of recognition of family carer’s needs. However it was also very evident that despite these vulnerabilities, these families were deeply committed to caring for their relative living with HIV/AIDS.
Discussion: This cross-national study provides insights into the multiple vulnerabilities experienced by families in HIV/AIDS care and bears testimony to the struggle, commitment, and resilience of families in the face of many adversities. Their commitment to care against so many adversities stands out as one of the most touching facets of the phenomenon of family caring for a person living with HIV/AIDS. Without their sacrifices, many HIV-positive persons would have been bereft of care and support. Yet, very little attention is given to these families affected by HIV/AIDS, who give so much and receive so little in the way of support.
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