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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: drsmbenbow@aol.com.
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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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References

Anderson, H. (2007). A postmodern umbrella: language and knowledge as relational and generative, and inherently transforming. In Anderson, H. and Gehart, D. (eds.), Collaborative Therapy. Relationships and Conversations that Make a Difference (pp. 7–19). London: Routledge.Google Scholar
Anthony-Bergstone, C. R., Zarit, S. H. and Gatz, M. (1988). Symptoms of psychological distress among caregivers of dementing patients. Psychology and Ageing, 3, 245–248.CrossRefGoogle Scholar
Balint, E., Courtenay, M., Elder, A., Hull, S. and Julian, P. (1993). The Doctor, the Patient and the Group: Balint Revisited. London: Routledge.Google Scholar
Balint, M. (1955). The doctor, his patient and the illness. Lancet, 1, 683–688.CrossRefGoogle Scholar
Benbow, S. M. and Boyce, W. (2008). In Our Shoes: A User and Carer Led Teaching Module. Centre for Ageing & Mental Health, Staffordshire University. Available at www.staffs.ac.uk/schools/health/ihr/camh/WMOPMHC/IOS/ReportJuly2008.pdf.Google Scholar
Benbow, S. M., Taylor, L. and Morgan, K. (2008). Multiple perspectives: involving users and carers in educating health and social care professionals. Quality in Ageing, 9 (2), 12–17.CrossRefGoogle Scholar
Doherty, D., Benbow, S. M., Craig, J. and Smith, C. (2008). Patients' and carers' journeys through older people's mental health services: powerful tools for learning. Dementia, in press.Google Scholar
Espinel, C. H. (1996). De Kooning's late colours and forms: dementia, creativity and the healing power of art. Lancet, 347, 1096–1098.CrossRefGoogle ScholarPubMed
Espinel, C. H. (2007). Memory and the creation of art: the syndrome, as in de Kooning, of “creating in the midst of dementia”. Frontiers of Neurology and Neuroscience, 22, 150–168.CrossRefGoogle Scholar
Frank, A. W. (1998). Just listening: narratives and deep illness. Families, Systems and Health, 16, 197–212.CrossRefGoogle Scholar
Galvin, K., Todres, L. and Richardson, M. (2005). The intimate mediator : a carer's experience of Alzheimer's. Scandinavian Journal of Caring Sciences, 19, 2–11.CrossRefGoogle ScholarPubMed
Gardner, K. (2002). Age, Narrative and Migration. Oxford: Berg.Google Scholar
Garner, J. (1997). Dementia: an intimate death. British Journal of Medical Psychology, 70, 177–184.CrossRefGoogle ScholarPubMed
Garner, J. (2004). Dementia. In Evans, S. and Garner, J. (eds.), Talking over the Years: A Handbook of Dynamic Psychotherapy with Older Adults (pp. 215–230). London: Brunner Routledge.Google Scholar
Greenhalgh, T. and Hurwitz, B. (1998). Narrative-Based Medicine: Dialogue and Discourse in Clinical Practice. London: BMJ Books.Google Scholar
Greenhalgh, T. and Hurwitz, B. (1999). Why study narrative? BMJ, 318, 48–51.CrossRefGoogle ScholarPubMed
Haeney, O., Moholkar, R., Taylor, N. and Harrison, T. (2007). Service user involvement in psychiatric training: a practical perspective. Psychiatric Bulletin, 31, 312–314. DOI: 10.1192/pb.bp.106.013714.CrossRefGoogle Scholar
Kirsi, T., Hervonen, A. and Jylha, M. (2004). Always one step behind: husbands' narratives about taking care of their demented wives. Health Education Journal, 8, 159–181.Google ScholarPubMed
Launer, J. (2002). Narrative-based Primary Care: A Practical Guide. Abingdon: Radcliffe Medical Press Ltd.Google Scholar
Mumby, D. K. (ed.) (1993). Narrative and Social Control: Critical Perspectives. Newbury Park, CA: Sage.CrossRefGoogle Scholar
Ong, Y. L., Benbow, S.M., Black, S. and Garner, J. (2007). Reflections on experience of involving users and carers in the work of the Faculty of Old Age Psychiatry. Quality in Ageing, 8, 45–49.Google Scholar
Shenk, D. (2001). The Forgetting. Alzheimer's: Portrait of an Epidemic. New York: Doubleday.Google Scholar
Tew, J., Gell, C. and Foster, S. (2004). Learning from Experience. Involving Service Users and Carers in Mental Health Education and Training. A Good Practice Guide. Available at http://www.mhhe.ltsn.soton.ac.uk/docs/lfeguide/Learningfromexperience.pdfGoogle Scholar
Wallang, P. (2006). The use of literary analysis in advanced communication. Psychiatric Bulletin, 30, 432–434.CrossRefGoogle Scholar
Ward-Griffin, C. and Bol, N. (2007). Mother-daughter relationship within Alzheimer's disease: daughters' perspectives. In Paoletti, I. (ed.), Family Caregiving for Older Disabled People: Relational and Institutional Issues. New York: Nova Science Publishing.Google Scholar