Nicholas David B, Swan Sylvia R, Gerstle Ted J, Allan Theresa, Griffiths Anne Marie
Faculty of Social Work, Central and Northern Region, University of Calgary, Edmonton, Alberta, Canada.
Health Qual Life Outcomes. 2008 Dec 17;6:114. doi: 10.1186/1477-7525-6-114.
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.
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.
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.
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.
患有炎症性肠病（IBD）且需要进行造口手术的青少年，其围手术期需求可能超过接受其他重大腹部手术的患者[1]。该手术需要持续且精心的日常护理与管理。胃肠道症状及并发症给年轻患者带来心理和社会压力[2]，并且该手术会导致身体形象改变以及日常自我护理方式的变化。本研究旨在探讨青少年造口手术后的经历及生活质量。
对在加拿大多伦多病童医院接受治疗的20名有造口或J形储袋的青少年进行了人种志访谈及后续焦点小组访谈。访谈内容逐字转录并进行主题提炼。
研究结果表明，青少年受到造口的深刻影响。青少年展现出了力量以及适应过程中的挣扎。确定的影响包括身体侵扰和身体形象改变、独立性降低、对造口的隐瞒、随时间的适应、家庭面临的挑战以及积极向前的策略。
启示强调了确保有意义的机会来理解和重新看待疾病压力的重要性。一个持续存在的临床挑战是促进这些青少年及其家庭的健康自尊和心理社会适应。找到有效方法来最大程度减少压力和尴尬，并重新看待个人的羞耻感，是重要的临床优先事项。同伴支持和家庭对话的机会可能有助于澄清担忧并减轻这些年轻人所承受的负担。提倡灵活且有充足资金支持的资源，以提升生活质量。
