| Summary: | The programme of research undertaken for the PhD Studentship (2003 - 2006) was funded by the Chief Scientist Office, at the Scottish Executive. The purpose of this programme of patient-centred stroke research was to contribute to the knowledge base regarding the needs of young adults who have had a stroke and their families, and to identify appropriate outcomes. It was concerned with gathering evidence, in an area of known complexity, to establish a wider, contextual foundation for future work in the field of young adult stroke. Specifically, this programme of research aimed to identify patient-centred outcome measures specific to the speciality of stroke; to describe the experience of stroke from the perspective of young adults and their families over an extended period of time; and to map the provision of stroke services in Scotland. Additionally, it aimed to involve service users in the research process. To this end an Advisory Group was established which comprised young adults post-stroke and family members. The Advisory Group contributed to the analysis of the qualitative findings and to the dissemination process. A systematic review of the patient-centred stroke literature utilised a developmental, 'inclusive' review method and enabled the identification of two stroke-specific, patient-centred outcome measures. An additional, thematic analysis of the review papers facilitated the development of a stroke-specific definition of patientcentredness. To arrive at an understanding of the lived experience of stroke from the perspectives of young adults and their families, a longitudinal phenomenological study was conducted. The methodological underpinning was derived from the existential phenomenology of Merleau-Ponty, and a single question interview technique was used. An existential-conceptual framework enabled an explication of the experience of stroke. In young adults, the experience was conceptualised as 'embodied disorientation' and in family members as 'disruption of temporal being'. Finally, a Scotland-wide postal survey of the members of the Scottish Stroke Nurse Forum was conducted, the results of which highlighted a lack of psychological support and counselling services. The work undertaken for this thesis contributes new knowledge by generating a stroke-specific definition of patient-centred care and developing our understanding of the experience of stroke from the perspective of young adults and their families. It establishes an evidence-base upon which to found future patient-centred/young adult stroke research.
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