Understanding quality of life through Sen's capability framework : an application to people living with HIV/AIDS

Abstract

It is nearly 30 years ago that the Acquired Immune Deficiency Syndrome (AIDS) epidemic officially started. In 2008 an estimated total of 33.4 million people lived worldwide with Human Immunodeficiency Virus (HIV), the virus that causes AIDS. Despite the fact that there is still no cure or vaccine for the HIV virus, important progress has been achieved in treatment for people living with HIV/AIDS (PLWHA) since the mid-1990s, when Highly-Active Antiretroviral Therapy (HAART) was introduced. HAART has proved successful in reducing AIDS-related morbidity and mortality and, therefore, prolonging the life expectancy of PLWHA. In Western democracies such as Australia, HIV/AIDS is considered as a chronic disease that can be managed by most people with the help of regular medical monitoring, adherence to treatment, and access to medical care. The substantial clinical changes observed since the introduction of HAART open a series of important questions regarding the quality of life of PLWHA. The current quality of life research on PLWHA consist primarily of health related quality of life studies (HRQOL), which investigate the subjective perceptions of PLWHA regarding the impact of their health status, disease, impairment, disability, or treatment primarily on their physical, mental/cognitive, and social functioning. This type of study has received several criticisms, for example the fact of confusing quality of life with perceived health. Another important limit of HRQOL studies is that they focus on PLWHA as patients or clinical cases, rather than as social actors with individual, social and economic rights experiencing freedoms and constraints to fulfil valued social roles and achieve desired social statuses. Lack of research on the experiences of PLWHA as social actors is regrettable because it would offer social scientists and social policy makers relevant information to identify health and social inequalities among PLWHA and to generate a broader and more insightful understanding of their quality of life. This thesis sets out to address these latter questions by introducing a complementary approach to the investigation of the quality of life of PLWHA known as the 'capability framework', which was founded by the economist and philosopher, Amartya Sen. This framework suggests that quality of life should be measured by focusing on people's capabilities, namely their real opportunities to lead the life that have reason to value. The thesis introduces the capability framework by discussing it in the wider debate around the concept of quality of life. It addresses the operationalisation of its core concept, capabilities, founding it in Sen's epistemological perspective, 'positional objectivity', which is interpreted as a constructivist approach. This is expanded by placing it in a more inclusive and developed constructivist framework, the phenomenological sociology of Alfred Schutz, which requires exploring and making explicit the model of social actor that underpins the operationalisation and measurement of any social science concept. Consequently, the psychological and sociological literature that has investigated the phenomenon of opportunities is reviewed to identify the cognitive, emotional, and meaning-making processes that underpin people's perception of opportunities. These analyses led to the development ofa threefold model of the main components of people's perception of opportunities and a fourfold model of experiences of opportunities. Both models are empirically tested through a mixed method investigation based on a concurrent nested strategy. The quantitative analysis operationalised the models through a secondary data analysis of the HIV Futures V Survey, an Australian nationwide survey of various clinical and social aspects of the lives of PLWHA. The qualitative analysis explored the factors affecting the perception of opportunities in 29 PLWHA of different socio economic background. The relevance of the results of both analyses to understand the quality of life of PLWHA is discussed against alternative measures and conceptualisations of quality of life.