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Understanding the role of patient and public involvement in renal dietetic research

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Morris, Andrew, Biggerstaff, Deborah, Krishnan, Nithya and Lycett, Deborah (2017) Understanding the role of patient and public involvement in renal dietetic research. Patient Experience Journal , 4 (2). 5.

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Official URL: http://pxjournal.org/journal/vol4/iss2/5

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Abstract

The objective was to consult patients on a proposed recruitment strategy to a patient and public involvement exercise. We wanted to explore the reasoning and willingness of patients to become co-researchers within a grant application. Eighteen people using the renal health service informed the consultation by action research so that their experiences could be used to guide the overall methodology. Twelve people took part in semi-structured interviews. NVIVO 10 and Framework Analysis were used to interpret emerging themes from the data. The recruitment strategy, informed by research expertise, became an experience-based expert design. The design took into account the limitations of attendance, the informational and physical needs of these service users. Service users wanted to share their experiences with people who would listen and were in a position to help make the changes. This gave them a sense of purpose and autonomy in their treatment and helped them cope with living with renal disease in society. However, feelings of doubt as to whether they could personally ‘make a difference’ as a co-researcher, were common. Consulting service users enabled the research team to recruit more people to interviews to explore motivation considering the unique personal and social needs of this service user group. Service users may need additional and continued support if they are to successfully take part in a clinical study research advisory group.

Item Type: Journal Article
Subjects: R Medicine > R Medicine (General)
R Medicine > RC Internal medicine
Divisions: Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Kidneys -- Diseases -- Treatment, Dietetics, Patient participation, Action research
Journal or Publication Title: Patient Experience Journal
Publisher: Patient Experience Institute ; The Beryl Institute
ISSN: 2372-0247
Official Date: August 2017
Dates:
DateEvent
August 2017Published
24 July 2017Accepted
Volume: 4
Number: 2
Article Number: 5
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Open Access
Funder: National Institute for Health Research (Great Britain). Research Design Service West Midlands (NIHRRDSWM)
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