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

  • Susan M. Benbow (a1), Yong Lock Ong (a2), Sarah Black (a3) and Jane Garner (a4)

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.

Corresponding author
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:
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This list contains references from the content that can be linked to their source. For a full set of references and notes please see the PDF or HTML where available.

C. R. Anthony-Bergstone , S. H. and Zarit M. Gatz (1988). Symptoms of psychological distress among caregivers of dementing patients. Psychology and Ageing, 3, 245248.

C. H. Espinel (1996). De Kooning's late colours and forms: dementia, creativity and the healing power of art. Lancet, 347, 10961098.

K. Galvin , L. and Todres M. Richardson (2005). The intimate mediator : a carer's experience of Alzheimer's. Scandinavian Journal of Caring Sciences, 19, 211.

J. Garner (1997). Dementia: an intimate death. British Journal of Medical Psychology, 70, 177184.

O. Haeney , R. Moholkar , N. and Taylor T. Harrison (2007). Service user involvement in psychiatric training: a practical perspective. Psychiatric Bulletin, 31, 312314. DOI: 10.1192/pb.bp.106.013714.

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International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
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