Involving service users in the development of the Support at Home: Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia.

Autor: Burnell KJ; School of Health Sciences and Social Work, University of Portsmouth, Portsmouth, UK., Selwood A, Sullivan T, Charlesworth GM, Poland F, Orrell M
Jazyk: angličtina
Zdroj: Health expectations : an international journal of public participation in health care and health policy [Health Expect] 2015 Feb; Vol. 18 (1), pp. 95-110. Date of Electronic Publication: 2012 Oct 18.
DOI: 10.1111/hex.12012
Abstrakt: Background: Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users.
Objectives: The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia (SHIELD Carer Supporter Programme).
Design: Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open-ended responses were thematically analysed.
Setting and Participants: Study 1: twenty-five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation.
Results: Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear.
Discussion and Conclusions: Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research.
(© 2012 John Wiley & Sons Ltd.)
Databáze: MEDLINE
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