Patient Perspectives on Treatment Compliance: Balancing Survival with Quality of Life

Howells, Janet Barbara (2006). Patient Perspectives on Treatment Compliance: Balancing Survival with Quality of Life MPhil Thesis, School of Social Work and Applied Human Sciences, University of Queensland.

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Author Howells, Janet Barbara
Thesis Title Patient Perspectives on Treatment Compliance: Balancing Survival with Quality of Life
School, Centre or Institute School of Social Work and Applied Human Sciences
Institution University of Queensland
Publication date 2006
Thesis type MPhil Thesis
Supervisor Dr Cheryl Tilse
Subjects 370200 Social Work
Abstract/Summary Patients’ lack of compliance with their prescribed treatment regimen is a significant issue in the management of end stage renal (ESRD) disease. Low rates of compliance persist and have serious consequences for many patients in the form of medical complications and mortality. Compliance is thus a contentious issue as conflict arises from the differing expectations of health care staff and the practices of patients in relation to the management of their treatment regimen. The practices and experiences of patients in accommodating their prescribed treatment for ESRD have predominantly been understood through the lens of the biomedical discourse. Within the health care context compliance is one of the major conceptual conduits for this discourse. Research on patient compliance with their prescribed treatment has primarily focused upon compliance rates, factors predicting non-compliance and intervention strategies to raise compliance. Such a strong focus on one facet of the efficacy of treatment regimen has left significant gaps in knowledge and understanding. Despite the centrality of patients in the success of any treatment plan, their perspectives regarding treatment are under-represented in the research literature and clinical care context. This thesis explored and documented the perspectives of ESRD patients in regard to compliance with the aim of enriching the understanding of the impact and experience of compliance with the prescribed treatment regimen. The conceptual framework underpinning the research was influenced by an understanding that issues of power and control are inherent in the notion of compliance, a patient centred approach to health care delivery and social work approaches that value holistic understandings of human experiences and promote self determination and autonomy in dealing with health care contexts. Capturing the patient perspective of ESRD and its treatment required a methodology that allowed for an in-depth exploration of patients’ views and experiences. The research design was qualitative and exploratory. Ten participants were purposively sampled and invited to participate in an in-depth interview. A thematic analysis identified the perspectives and experiences of patients currently undergoing treatment for ESRD. Participants within this study described their experience of negotiating a relationship with ESRD and treatment as an ongoing effort to manage living with a chronic disease and balance the necessities and limitations of treatment and disease with their needs and expectations and their quality of life. In this management, compliance was not the primary focus of participants. This study demonstrated that participants had many other legitimate, equally important demands and competing priorities to negotiate within their lives with ESRD. Modifying the standards of compliance to more readily suit the demands of their lives and quality of survival was a way in which participants could exert control over their illness experience. Participants reported that frequently these modifications were negatively labelled by health professionals. This thesis argues that the concept of compliance too narrowly defines the illness experience and makes it difficult to understand why patients select a particular degree of compliance with their prescribed treatment regimen. Whilst the biomedical perspective continues to be systematically applied in the chronic illness arena to the exclusion of other perspectives it will limit other ways of thinking and talking about patient’s treatment experience. The primary aim of this thesis was to raise awareness of alternative voices to the dominant biomedical discourse in this context, one of which is the patient perspective.

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Created: Fri, 21 Nov 2008, 15:23:53 EST