Family Caregivers: A critical element of the continuum of HIV/AIDS care. Evidence from India and the UK Dr George Palattiyil Glasgow School of Social Work

Context of the study Family carers: cornerstone in the support for people living with HIV/AIDS all over the world and the pre-dominant form of care in less developed parts of the world In communities throughout the world, families face daily hardships associated with HIV and AIDS: illness, loss of income, stigma, bereavement, loss of human rights Families operating in a “culture of silence” due to stigma and discrimination Family-based care is a critically important element of the continuum of HIV/AIDS care.

Objectives of the Study To understand the phenomenon of family caring as it is experienced by the carers To investigate family caring in two contexts of development (Kerala and Scotland) To connect findings to existing literature on stress, coping, and mental health

Understanding the Two Settings Scotland High level of economic development and health care infrastructure Nationalised health care Well developed social services system Discrimination exists, but to a lesser degree Kerala Developing economy and infrastructure Combination of public and private health care systems Lack of social services Widespread stigma and discrimination associated with HIV/AIDS

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

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 Majority female (80%) Spouses, partners, or parents of HIV-affected person Most had 12 or more years of education 3 employed; 2 homemakers

Findings Caregivers from both contexts experienced significant burdens. M ajor 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.

Synthesis of the themes The themes that emerged from the research highlighted the many facets and complexities of the experience of caring for a family member with HIV/AIDS. These themes when synthesised brought to light the concepts of struggle, commitment, and resilience (SCR) that seemed to resonate strongly through the stories of the carers. These concepts were utilised to develop a theoretical model that attempts to explain the complex process of family caring in HIV and AIDS.

The notion of struggle reflects the many obstacles and heartbreaks that the carers encounter in dealing with experiences such as physical exhaustion, anxiety and loss, economic crises, complex family concerns, social isolation, and rejection. Commitment reflects the unquestioning bonds of duty and affection that led 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.

A model of family caring in HIV/AIDS

The three key concepts reflect the phenomenon of family caring in HIV/AIDS in this study. Various environmental and personal characteristics contribute to each of these concepts, resulting in a complex pattern of interwoven influences. The model attempts to explain the process of family caring, but also to serve as a jumping-off place for further efforts to develop our knowledge about the phenomenon of family caring in HIV/AIDS, as well as explorations of ways to provide additional support and assistance to family carers around the world.

Insights for Social Work If family caregivers are to be central to turning the tide of the HIV/AIDS epidemic, then their care needs should be at the forefront of the social work response. Carers provide valuable services: need to recognise and foster commitment. Support families that experience dehumanising stigmatisation. Intervention to understand and strengthen resilience of the carers Social work to facilitate the voices of the carers, such that they can be heard and strengthened.

In conclusion: The model provides a framework that enables professionals working in this field to intervene meaningfully with family carers and contribute effectively towards ameliorating the suffering that is rooted in the socio-cultural, economic, and political realities of the HIV/AIDS epidemic. Correspondence to: Dr George Palattiyil Glasgow School of Social Work University of Strathclyde Glasgow G13 1PP United Kingdom