Social Science Programme / Living with anti-retroviral therapy: People's adaptive coping and adjustment to living with H

Lead Research Organisation: MRC/UVRI Uganda Research Unit on AIDS

Abstract

Social science research on peoples chronic illness experience has largely been restricted to industrial settings, and to date there has been little social scientific research on people living with HIV on anti-retroviral therapy (ART) in sub-Saharan Africa, their adaptive strategies, and their transition to living with HIV as a chronic condition. Our research under this theme begins to fill that gap.|Understanding peoples adaptive strategies and the process of transition is important for individual clients and the success of ART programmes. Incorporating the virus and the treatment regimen into life is important for peoples long term management of the disease and more specifically, adherence to ART. The literature on chronic illness, and newly emerging research on HIV experience, tells us that people need to be leading meaningful economic and social lives to go on managing their illness and to go on adhering to ART. ART delivery programmes need to understand the economic and social lives of people living on ART, their quests for order and control, the transition challenges that they face and the support that they need beyond medicine. With this support people can become active patients and self-managers of their condition.

Technical Summary

The roll-out of antiretroviral therapy (ART) has prolonged the lives of thousands of people living with HIV in sub-Saharan Africa. Restored health has enabled these people to work again, re-engage with family and participate in social and political activities. Health providers and people living with HIV (PLHIV) are able to treat HIV as a manageable chronic condition rather than a terminal illness. Adjustment to a new life on ART, and living with HIV as a chronic condition, poses significant medical, social and economic challenges for PLHIV, especially in settings of poverty, gender inequality and where the supply of ART is insecure. |Projects under this research theme are exploring the challenges of rebuilding a livelihood, relationships and hope devastated by HIV. We are studying how people re-adjust their time-orientation towards a new future, resume productive activity to rebuild their livelihood (which in this setting means hard manual or agricultural work or a difficult search for paid employment) and, thus how people re-engage with the normal struggle of poverty. Resuming a normal family life or rebuilding relationships is also important for creating a sense of order, control and normality, but also poses challenges in contexts severely affected by the HIV epidemic where those taking ART are often still grieving the loss of children, partners and close family and friends, people who may have had an important economic as well as social and emotional role in their life. In addition, stigma still surrounds HIV which may compound the difficulties of rebuilding relationships. There is, therefore, a lot of emotional, practical and relationship work to be done by people, forms of adaptive coping, as they try and adjust to a new future on ART.|There are three research projects under this theme: the first, a qualitative study spanning 8 months is documenting the everyday life experiences over the time of 10 men and 10 women are accessing ART from a local government hospital to understand more about adjusting to life with HIV as a chronic condition. The second project uses both qualitative and quantitative data collection and focuses on people who have been on ART for at least two years, looking at their processes of adaptation to their chronic condition, including their mental health. The third project explores the effect of HIV/AIDS and of the initiation of ART upon Health-Related Quality of Life and on household wealth and living standards over time. |These complementary studies are funded from different sources including from the MRC/UVRI Uganda Unit core budget and DFID.

Publications

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Martin F (2016) Adjustment as process and outcome: Measuring adjustment to HIV in Uganda. in Journal of health psychology

 
Description ESRC Open call
Amount £150,000 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start  
 
Description Evidence for Action Consortium (DFID)
Amount £10,000 (GBP)
Organisation Government of the UK 
Department Department for International Development (DfID)
Sector Public
Country United Kingdom
Start  
 
Description UEA 
Organisation University of East Anglia
Department School of International Development UEA
Country United Kingdom 
Sector Academic/University 
PI Contribution Leading the team -- data collection, writing etc.
Collaborator Contribution Inputs from faculty members to publications and funding applications
Impact none other than publications already listed under publications