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

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

Evaluation of the National headspace Program - Final Report

headspace is often referred to as the Australian Government’s flagship mental health program for people aged 12 to 25. Since 2006, it has played an important role in efforts to tackle mental ill-health, self-harm, and suicide among young Australians. Delivered as a network of community-led and governed centres across Australia, headspace services support young people and their families to access clinical and community mental health supports and interventions. This evaluation is focused on headspace service provision, as provided by individual services around Australia from 1 July 2015 to 30 June 2020. Various developments in Australia’s mental health landscape within the period are taken into account for this evaluation, which is intended to help inform policy and investment decisions about the future direction of the headspace model

Towards a middle-range theory of mental health and well-being effects of employment transitions: Findings from a qualitative study on unemployment during the 2009-2010 economic recession.

This article builds upon previous theoretical work on job loss as a status passage to help explain how people's experiences of involuntary unemployment affected their mental well-being during the 2009-2010 economic recession. It proposes a middle-range theory that interprets employment transitions as status passages and suggests that their health and well-being effects depend on the personal and social meanings that people give to them, which are called properties of the transitions. The analyses, which used a thematic approach, are based on the findings of a qualitative study undertaken in Bradford (North England) consisting of 73 people interviewed in 16 focus groups. The study found that the participants experienced their job losses as divestment passages characterised by three main properties: experiences of reduced agency, disruption of role-based identities, for example, personal identity crises, and experiences of 'spoiled identities', for example, experiences of stigma. The proposed middle-range theory allows us to federate these findings together in a coherent framework which makes a contribution to illuminating not just the intra-personal consequences of unemployment, that is, its impact on subjective well-being and common mental health problems, but also its inter-personal consequences, that is, the hidden and often overlooked social processes that affect unemployed people's social well-being. This article discusses how the study findings and the proposed middle-range theory can help to address the theoretical weaknesses and often contradictory empirical findings from studies that use alternative frameworks, for example, deprivation models and 'incentive theory' of unemployment

How do self‐advocates use community development to change attitudes to disability?

Background Negative attitudes remain a major barrier to the equality of people with disability, especially when coupled with the lack of autonomy imposed on many people. This paper analyses how disability self‐advocacy groups seek to change community attitudes and work towards systemic change by mobilising knowledge from their lived experience. Methods The paper applies a cycle of praxis community development approach (a cycle of experience, learning and reflection, synthesis and planning, and implementation and review) to conceptualise and analyse their activities. The methods were a desktop document search, focus groups and reflective analysis with members of two self‐advocacy groups. Findings A synthesised data analysis found that applying the four‐part community development framework was useful to understand the practice and the purpose of work by self‐advocacy groups to change attitudes. The analysis also demonstrates the benefits for advocates and codesigned activities to intentionally apply the cycle of praxis model to guide their future efforts to change attitudes. Conclusions The research provides evidence that self‐advocacy groups achieve sustained impacts on attitudes in the community, beyond the direct benefit to their members. Government investment in self‐advocacy has potential to leverage wider system change in attitudes to achieve policy goals for the rights of people with disability. Methodologically, the research also has implications for the benefit of inclusive roles in reflective analysis to understand the lived experience of how practices contribute to system change. The design is an opportunity for inclusive researchers to intentionally incorporate reflective analysis into research processes

Ronald McDonald Family Rooms: literature review plan

Family rooms in hospitals are clinical-free spaces away from children\u27s wards to support families of hospitalised children. This publication outlines a plan to review the literature about hospital family rooms, including economic costs and benefits, and the impact on the wellbeing of children, families and hospital staff. Introduction Ronald McDonald House Charities (RMHC) Australia is commissioning research to build an evidence base on the value of their support program for families with seriously ill children. This project is a review of the Australian and international literature on the role, alternatives to, and value of Ronald McDonald Family Rooms, including their economic costs and benefits, and impact on the wellbeing of children, families and the hospital. Family Rooms are ‘clinical-free spaces’ that aim to offer support to families with children who are hospitalised, outpatients or undergoing same day surgery, by providing services, for example kitchen and laundry facilities, and embracing an approach to care that focuses on the family as a whole (family-centred care). The review will report on existing evidence from all relevant fields, including child, family, health care and service system perspectives, in order to draw evidence-based practice implications about the ways in which Family Rooms and their alternatives can have a positive impact on families’ and children’s wellbeing and health care effectiveness. Central to the success of the review is the identification of all relevant national and international studies, comparing relevant findings, interventions and research methodologies across different settings and disciplines, and building on the research findings of current and previous RMHC Global research. The findings of the literature review will be complemented by summaries of routinely collected administrative data on the use of the Family Rooms in Australia. They will inform the development of RMHC investment strategies and research program and be of interest across different communities of research and practice that operate family-centred programs and require evidence of their effectiveness, for example government, nongovernment and private providers. RMHC is a quasi-federated organisation with a national body and local House Chapters that support families with seriously ill children via a suite of programs, of which the Family Rooms are a key strategic priority. A unique feature of the RMHC structure lies in the corporate relationship with McDonalds Australia Ltd (McDonalds). As McDonald’s preferred charity, RMHC receives significant funding from the corporation. Family Rooms reflect an approach to care that focuses on the family as a whole. When a child is admitted into hospital, the whole family is affected, rendering a need for the impact of the child\u27s admission on all family members to be considered by the hospital, nurses, and doctors. \u27Family-centred care\u27 (FCC) is an approach to paediatric health care founded on the belief children’s and families’ wellbeing are best achieved by involving the whole family in the plan of care, enabling them to meet the needs of their child. Although there is no agreed definition of FCC in the literature, there is a growing agreement on the principles that inform FCC, in particular, information sharing, respect and dignity, partnership and collaboration, negotiation, and care in the context of family and community. These principles qualify FCC as the main theoretical framework within which to investigate and understand the function of Family Rooms in Australia and internationally. This review will explore the available evidence on the role, alternatives to, and value of Family Rooms from the perspectives of all parties involved, i.e. the children and their families, House Chapters, volunteers, hospital staff members and main stakeholders, and with reference to a wide range of health and wellbeing outcomes and their relevance in relation to FCC and support. This approach will enable RMHC to identify best practices, understand how support can be best delivered to families and children and contribute to the international evidence base