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Abstract

This thesis investigates healthcare measurement for people who live with the language disability, aphasia. It describes how a tool was developed to investigate the impact of living with aphasia.

The first chapter describes why healthcare measures are necessary. It describes some of the complexities associated with measurement when working with people who have traditionally been excluded from health care measurement. It discusses different types of measures currently available and why they are often inadequate for investigating the impact of aphasia.

The second chapter details the initial stages of development of a new tool, undertaken from a professional viewpoint. This chapter describes the rationale behind the items and methods used in the instrument. It details the changes that were made to the tool as a result of pilot and field testing.

The third chapter describes the conceptual and methodological issues that informed the next stages of the development process. There is a discussion of the current issues in healthcare that are seen as pertinent to the development of a tool to explore the impact of aphasia. There is consideration of the relative strengths of qualitative and quantitative research methods, and the tension that can exist between ensuring a tool is psychometrically robust whilst still being accessible and acceptable to the client group for whom it is intended.

Chapters four and five detail how conceptual considerations led to changes in the methodology employed in the next stage of development. They describe two methods of collaborative working; individual in-depth interviews and working with an advisory group of people with aphasia. They detail the changes made to the tool as a result of the consultation processes.

Chapter six explores how these inclusive methods led to examination of the social relations of research practice. It discusses the challenges and benefits presented by this way of working, and the personal effects of inclusive research practices. It investigates these in the light of what has been learnt through the development of the instrument described.

This thesis therefore presents the CDP, a new way of exploring and measuring the impact of aphasia on someone’s life. It considers the purpose of healthcare measurement. It exemplifies participatory research with people who have aphasia, including a reflection on the tension that can exist between qualitative and quantitative methodologies when developing a new tool. By doing so, it offers guidance on research practice for those wishing to conduct inclusive research with people traditionally excluded from health care measurement including people with aphasia.

Publication Type:	Thesis (Doctoral)
Subjects:	R Medicine > RZ Other systems of medicine
Departments:	Doctoral Theses

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