Faculty of Social Work, University of Calgary, Calgary, Alberta, Canada.
Qual Health Res. 2011 Feb;21(2):162-73. doi: 10.1177/1049732310382789. Epub 2010 Sep 10.
Relatively little is known about how children perceive and manage end-stage renal disease (ESRD) in daily life. To address this gap in the literature, the experiences and perceptions of children with ESRD were examined in this study. Study design comprised ethnographic interviews with 25 children and adolescents ages 7 to 18 years. Semistructured interviews were audiotaped, transcribed verbatim, and subjected to content analysis. Participants received a range of ESRD treatments including transplantation and dialysis. Findings indicate that ESRD has a profound impact on children. They described a range of challenges and experiences including not feeling "normal"; developing ESRD knowledge; frequent absence from school; gaining responsibility for ESRD care; relying on family, friends, and health care providers; and adjusting despite adversity. These findings depict a multifaceted, dynamic perspective engendered in tensions as children and adolescents grapple with adversity yet experience personal growth and resiliency. Implications and recommendations for clinical practice and research are discussed.
儿童对终末期肾病（ESRD）在日常生活中的感知和管理知之甚少。为了填补这一文献空白，本研究探讨了患有 ESRD 的儿童的经历和看法。研究设计包括对 25 名 7 至 18 岁的儿童和青少年进行的人种学访谈。半结构化访谈进行了录音、逐字转录，并进行了内容分析。参与者接受了包括移植和透析在内的一系列 ESRD 治疗。研究结果表明，ESRD 对儿童有深远的影响。他们描述了一系列的挑战和经历，包括感觉“不正常”；获得 ESRD 知识；经常缺课；承担 ESRD 护理的责任；依赖家人、朋友和医疗保健提供者；以及在逆境中调整自己。这些发现描绘了一个多方面的、动态的视角，在儿童和青少年应对逆境的同时，体验到个人成长和适应能力。本文讨论了对临床实践和研究的影响和建议。
