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Narratives in a users' and carers' group: meanings and impact

Published online by Cambridge University Press:  17 October 2008

Susan M. Benbow ,
Yong Lock Ong ,
Sarah Black  and
Jane Garner
Susan M. Benbow*
Affiliation:
Centre for Ageing and Mental Health, University of Staffordshire, and Old Age Psychiatry, Wolverhampton City Primary Care Trust, U.K.
Yong Lock Ong
Affiliation:
Psychiatry of Old Age, Goodmayes Hospital, North East London Foundation Trust, London, U.K.
Sarah Black
Affiliation:
Psychiatry of Old Age, Wonford House Hospital, Devon Partnership NHS Trust, Exeter, U.K.
Jane Garner
Affiliation:
Psychiatry of Old Age, Barnet, Enfield and Haringey NHS Mental Health Trust, London, U.K.
*
Correspondence should be addressed to: Professor Susan M Benbow, Centre for Ageing & Mental Health, Faculty of Health & Sciences, Staffordshire University, Blackheath Lane, Stafford ST18 0AD, U.K. Phone: +44 (0)1902 575151; Fax: +44 (0)1902 444127. Email: [email protected].
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Abstract

Background: Carers who wished to share their experiences with a national working group (the Consumer Group) prepared narratives as a way of identifying areas for discussion.

Methods: The narratives were submitted to one author and subjected to thematic qualitative analysis. The themes were fed back to the Group for discussion.

Results: Five main themes were identified: difficulties in obtaining a diagnosis; acting as an advocate; stresses of caring; practical problems with social care; and emotions experienced by carers.

Conclusions: The narratives provided a means of sharing carers' experiences and creating initiatives for further action by the Group. They have an impact on the people who hear or read them but may also be therapeutic for those who produce them. Narratives can also be a powerful tool in teaching and training, and in identifying areas for service and professional improvement.

Keywords

carerspatient journeygeriatric psychiatryadvocatesdementiaburden of care
Type
Research Article
Information
International Psychogeriatrics , Volume 21 , Issue 1 , February 2009 , pp. 33 - 39
Copyright
Copyright © International Psychogeriatric Association 2008

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