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People with dementia as peer workers, challenges, and benefits: a thematic analysis and nominal groups study

Published online by Cambridge University Press:  27 March 2017

Joshua Stott*
Affiliation:
Research Department of Clinical, Educational and Health Psychology, University College London, Gower Street WC1E 6BT, London, UK
Joanne Marie Sweeney
Affiliation:
Division of Psychology and Language Science, University College London, London, UK
Luke Koschalka
Affiliation:
INC Research, 2 Meadows Business Park, Station Approach, Blackwater, GU17 9AB, Camberley, UK
Luke O'Connor
Affiliation:
Central and North West London NHS Foundation Trust, London, UK
Amanda Mwale
Affiliation:
Research Department of Clinical, Educational and Health Psychology, University College London, Gower Street WC1E 6BT, London, UK
*
Correspondence should be addressed to: Joshua Stott, Research Department of Clinical, Educational and Health Psychology, University College London, Gower Street WC1E 6BT, UK. Phone: +44 (0)20 7679 5950 Email: [email protected].

Abstract

Background:

There are national initiatives to involve service users in service delivery. However, programs employing people with dementia as peer support workers (PSWs) in memory services are in their infancy. This study is the first to explore the challenges and benefits to staff and peers involved in such a program.

Methods:

Focus groups, structured based on nominal groups (NG) methodology were run with PSWs and clinical staff from two memory services. In total, there were 12 participants, with three focus groups: PSWs alone (n = 3); staff members alone (n = 6); and PSWs and staff members combined (n = 6). Data were analyzed through thematic analysis of recorded session content and the ranking of themes inherent in an NG approach.

Results:

Perceived benefits of the PSW program were similar for staff and PSWs and included personal benefits for PSWS and stereotype reduction for staff. More challenges were reported by staff than PSWs, but both groups agreed that role definition and dealing with the cognitive deterioration inherent in dementia were key issues.

Conclusions:

The PSW program does have benefits for involved staff and PSWs. However, the challenges identified highlight the need for careful and consensual setup and consideration of power dynamics, with agreed roles and clear guidelines to deal with cognitive deterioration.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2017 

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