1. Theorizing Families in HIV/AIDS Care: Reflections from two Developmental Contexts Dr George Palattiyil Glasgow School of Social Work University of Strathclyde Glasgow G13 1PP United Kingdom Email: g.palattiyil@strath.ac.ukg.palattiyil@strath.ac.uk

2. Background: Families face multiple challenges when caring for a member with HIV/AIDS: loss of income, stigma and discrimination, bereavement, loss of human rights… Families operate in a ‘culture of silence’ due to wide- spread stigma and discrimination Families represent an important but little understood resource in the global struggle with HIV/AIDS This study aimed to understand the experiences of family caregivers across two developmental contexts: Kerala (India) and Scotland (UK)

3. Methodology Exploratory, cross-national approach Qualitative and quantitative strategies Purposive sampling Focus on understanding the day-to-day realities of family carers

4. Participants Kerala 23 family carers Relatively young (majority < age 40) Majority female (74%) Nearly all were spouses of HIV-affected person Most had 10 or fewer years of education Mostly homemakers (no outside employment) Scotland 5 family carers Spread across age range from 30-60 Majority female (80%) Spouses, partners, or parents of HIV-affected person Most had 12 or more years of education 3 employed; 2 homemakers

5. Findings Caregivers from both contexts experienced significant burdens. Major experiences of the caregivers in Kerala: poverty, stigmatization, discrimination, lack of support networks and adequate healthcare facilities. The caregivers in Scotland shared some of these experiences at a lesser degree, but their dominant experiences centred on care giving stress, limited support, role stress, difficulty finding and maintaining a job, and lack of recognition of carers’ needs. Very little recognition or support for the services of carers in both settings.

6. Synthesis of the findings Three key themes: of struggle, commitment and resilience resonating through the stories of the carers. Basis for developing a theoretical model to explain the phenomenon of HIV/AIDS family- care-giving. Reflects the relationships between the carer and the wider social environment and between the carer and the cared-for person.

7. A model of family caring in HIV/AIDS

8. The notion of struggle reflects the many obstacles and heartbreaks that family carers encounter in dealing with experiences such as physical exhaustion, anxiety and loss, economic crises, social isolation/rejection. Commitment reflects the unquestioning bonds of duty and affection that help the carers to undertake and continue to bear the daily burdens demanded by caring. The concept of resilience reflects the strength and resourcefulness of many of these carers, who found a way to go on when it seemed that they had lost everything.

9. Conclusions: This cross-national study explains the complexities involved in caring and bears testimony to the struggle, commitment, and resilience of families in the face of adversities. The insights gained point to the moral imperative to ensure that the needs of family- carers are brought to the forefront of policies and programmes that address their needs, in particular to live in an environment free of stigma and discrimination.