Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia.
Arch Dis Child. 2012 May;97(5):395-402. doi: 10.1136/archdischild-2011-300639. Epub 2012 Mar 7.
To describe the experiences and perspectives of children and adolescents on dialysis.
A systematic review of qualitative studies was conducted that explored the experiences of children on dialysis. Electronic databases and reference lists of relevant articles were searched to October Week 2, 2010.
A total of 17 studies, which reported the experiences of 143 children receiving dialysis, were included. Five major themes were identified: loss of control (high reliance on carers, parental overprotectiveness, unrelenting dependence on a machine, impaired body integrity), restricted lifestyle (limited socialisation opportunities, academic struggle), coping strategies (hope for kidney transplant and medical advances, social support, positive determination and self-awareness, engaging in activities, denial), managing treatment (ownership, proactive involvement, adherence to fluid and diet restrictions) and feeling different (abnormal physical appearance, injustice, being a burden).
Children undergoing dialysis experience impaired growth, invasive procedures, school and social constraints. They often have poor self-esteem and a pervasive sense of losing their identity, body integrity, control, independence and opportunity. Interventions are needed to equip children with the capacity to manage their health, participate in community, engage in 'permissible' recreational activities, progress in their studies, and remain vigilant in dialysis and treatment responsibilities, for improved health and treatment outcomes.
描述儿童和青少年在透析中的体验和观点。
对探讨儿童透析体验的定性研究进行了系统评价。电子数据库和相关文章的参考文献列表搜索至 2010 年 10 月第 2 周。
共纳入 17 项研究，报告了 143 名接受透析的儿童的体验。确定了 5 个主要主题：失去控制（高度依赖照顾者、父母过度保护、对机器的无情依赖、身体完整性受损）、受限的生活方式（有限的社交机会、学业困难）、应对策略（对肾移植和医疗进步的希望、社会支持、积极的决心和自我意识、参与活动、否认）、治疗管理（所有权、积极参与、遵守液体和饮食限制）和感觉不同（身体外观异常、不公平、成为负担）。
接受透析的儿童经历了生长受限、侵入性程序、学校和社会限制。他们通常自尊心较低，普遍感到失去身份、身体完整性、控制、独立性和机会。需要干预措施来培养儿童管理健康、参与社区、从事“允许”的娱乐活动、在学业上取得进步以及在透析和治疗责任方面保持警惕的能力，以改善健康和治疗结果。
