Document Detail


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.
MedLine Citation:
PMID:  23075155     Owner:  NLM     Status:  Publisher    
Abstract/OtherAbstract:
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.
Authors:
Karen J Burnell; Amber Selwood; Theresa Sullivan; Georgina M Charlesworth; Fiona Poland; Martin Orrell
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Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2012-10-18
Journal Detail:
Title:  Health expectations : an international journal of public participation in health care and health policy     Volume:  -     ISSN:  1369-7625     ISO Abbreviation:  Health Expect     Publication Date:  2012 Oct 
Date Detail:
Created Date:  2012-10-18     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9815926     Medline TA:  Health Expect     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
Copyright Information:
© 2012 Blackwell Publishing Ltd.
Affiliation:
School of Health Sciences and Social Work, University of Portsmouth, Portsmouth, UK.
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