Mapping self-management strategies in Parkinson's disease : implications for physiotherapy practice and research

Jones, Diana (2001) Mapping self-management strategies in Parkinson's disease : implications for physiotherapy practice and research. Doctoral thesis, Northumbria University.

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Abstract

The overarching purpose of this research was to find out about life with Parkinson's disease and to use that knowledge to inform physiotherapy management. The project aimed to explore current and alternative ways in which professionals could seek to understand the experience of life with Parkinson's disease; to explore the implications of resultant new knowledge; and to investigate how physiotherapy relationships should take account of new ways of understanding and new knowledge. A spiral of research activity was undertaken comprising three successive cycles. The first two cycles were undertaken using case study methodology, focusing on the experience of life with Parkinson's disease from a group and an individual perspective. A wide range of qualitative and quantitative methods for both data collection (including interviews, disability and quality of life scales and activity monitoring) and data analysis were employed. The level and complexity of personal work undertaken by individuals to manage their condition was the principal theme to emerge from initial cycles. This insight led to the development of a tool — strategy mapping — to enable professionals to capture and use information about self- management in their interactions with individuals. The third cycle employed action research methodology to develop and evaluate the strategy mapping framework - centred on identifying strategies related to Self, Routines, Support and Involvement - in physiotherapy practice. A number of perspectives were developed in relation to the project's aims. The methodological perspective highlighted the need for commitment to listening to the experiential narrative and hearing the story of self-management. The ontological perspective offered the potential for practice and research to build on existing self- management solutions. The epistemological perspective pointed to addressing power differentials between knowledge bases to promote collaborative therapy relationships. The full potential of a paradigm shift which attempts to increase the degree of alignment between the everyday lives of individuals with Parkinson's disease and physiotherapy practice, education and research remains to be uncovered.

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