Struggles, strengths, and strategies: an ethnographic study exploring the experiences of adolescents living with an ostomy

Nicholas, Swan, Allan Theresa, Griffiths Anne, Gerstle, Griffiths

Description

Adolescents with IBD requiring ostomy surgery experience perioperative needs that may exceed those of patients experiencing other major abdominal surgery 1 . This procedure requires ongoing and vigilant daily care and management. Gastrointestinal symptoms and complications impose psychological and social stresses on young patients 2 , and the procedure results in body image changes and daily regimens of self-care. This study aimed to explore adolescents' experiences and quality of life following ostomy surgery. Methods Ethnographic interviews and a subsequent focus group were conducted with 20 adolescents with an ostomy or j-pouch being treated at the Hospital for Sick Children in Toronto, Canada. Interviews were transcribed verbatim and subjected to theme generation. Results Findings suggest that adolescents are profoundly affected by their ostomy. Adolescents convey strength as well as adjustment struggles. Identified impacts include body intrusion and body image changes, decreased independence, secrecy about the ostomy, adjustment over time, challenges for the family, and strategies for constructively moving forward. Conclusion Implications address the importance of ensuring meaningful opportunities to understand and reframe the stresses of illness. An ongoing clinical challenge involves the promotion of a healthy self-esteem and psychosocial adjustment for these adolescents and their families. Finding effective ways to minimize stress and embarrassment and reframe personal shame, constitute important clinical priorities. Opportunities for peer support and family dialogue may assist in clarifying worries and easing the burden carried by these young persons. Flexible and adequately funded resources are advocated in fostering quality of life.

Informations

• Publié par: biomed
• Publié le: 01 janvier 2008
• Nombre de lectures: 11
• Langue: English

Extrait

Health and Quality of Life Outcomes

BioMedCentral

Open Access Research Struggles, strengths, and strategies: an ethnographic study exploring the experiences of adolescents living with an ostomy 1,2 23 4 David B Nicholas*, Sylvia R Swan, Ted J Gerstle, Theresa Allanand 5 Anne Marie Griffiths

1 Address: Facultyof Social Work, Central and Northern Region, University of Calgary, #444, 1104482 Avenue, Edmonton, Alberta, Canada, 2 3 Department of Social Work, Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada,Department of General Surgery, 4 Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada,5B Ward – Long Stay Surgical Unit, Hospital for Sick Children, 5 555 University Ave, Toronto, ON M5G 1X8, Canada andGastroenterology, Hepatology and Nutrition, Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada Email: David B Nicholas*  [e-mail]; Sylvia R Swan  [e-mail]; Ted J Gerstle  [e-mail]; Theresa Allan  [e-mail]; Anne Marie Griffiths  [e-mail] * Corresponding author

Published: 17 December 2008Received: 28 May 2008 Accepted: 17 December 2008 Health and Quality of Life Outcomes2008,6:114 doi:10.1186/1477-7525-6-114 This article is available from: http://www.hqlo.com/content/6/1/114 © 2008 Nicholas et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract Background:Adolescents with IBD requiring ostomy surgery experience perioperative needs that may exceed those of patients experiencing other major abdominal surgery [1]. This procedure requires ongoing and vigilant daily care and management. Gastrointestinal symptoms and complications impose psychological and social stresses on young patients [2], and the procedure results in body image changes and daily regimens of self-care. This study aimed to explore adolescents' experiences and quality of life following ostomy surgery. Methods:Ethnographic interviews and a subsequent focus group were conducted with 20 adolescents with an ostomy or j-pouch being treated at the Hospital for Sick Children in Toronto, Canada. Interviews were transcribed verbatim and subjected to theme generation. Results:Findings suggest that adolescents are profoundly affected by their ostomy. Adolescents convey strength as well as adjustment struggles. Identified impacts include body intrusion and body image changes, decreased independence, secrecy about the ostomy, adjustment over time, challenges for the family, and strategies for constructively moving forward. Conclusion:Implications address the importance of ensuring meaningful opportunities to understand and reframe the stresses of illness. An ongoing clinical challenge involves the promotion of a healthy self-esteem and psychosocial adjustment for these adolescents and their families. Finding effective ways to minimize stress and embarrassment and reframe personal shame, constitute important clinical priorities. Opportunities for peer support and family dialogue may assist in clarifying worries and easing the burden carried by these young persons. Flexible and adequately funded resources are advocated in fostering quality of life.

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