Nightingale Ruth, McHugh Gretl, Kirk Susan, Swallow Veronica
Great Ormond Street for Hospital NHS Foundation Trust, London, UK.
School of Healthcare, University of Leeds, Leeds, UK.
Child Care Health Dev. 2019 Mar;45(2):175-188. doi: 10.1111/cch.12645.
Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self-management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility.
An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self-management of their LTC? (b) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes.
Twenty-nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility.
Evidence suggests that the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change.
患有长期疾病（LTCs）的儿童和年轻人通常依赖家人或与家人共同管理病情，并期望随着年龄增长培养自我管理技能。然而，在青春期，年轻人可能会发现遵循规定的治疗方案具有挑战性，从而导致临床效果不佳。尽管已有综述探讨了儿童和父母的自我管理经验，但尚无研究明确考察自我管理责任从父母向子女的转移情况。
进行了一项综合综述，旨在通过回答两个问题来探讨长期疾病自我管理责任从父母向子女的转移：（a）儿童如何从父母手中接过长期疾病自我管理的责任？（b）哪些因素影响了这种责任从父母向子女的转移？检索了八个数据库，查找1995年至2017年发表的论文。评估了方法学质量；对纳入的论文进行综合分析以确定主题。
共识别出29篇论文。大多数论文采用定性设计，主要关注糖尿病儿童。研究对象主要是儿童和/或父母；只有两项研究纳入了卫生专业人员。承担自我管理责任被视为正常发育的一部分，但很少在儿童在生活其他方面获得独立的背景下进行探讨。儿童和父母采取了一些策略来促进这种转移，但关于卫生专业人员的作用以及何种方式有帮助存在矛盾心理的证据有限。对于儿童和父母是旨在共同管理还是自我管理，以及这对家庭来说是否是一个现实或期望的目标，尚缺乏明确认识。儿童、家庭、社交网络、卫生专业人员和长期疾病等多种因素影响着儿童承担责任的方式。
有证据表明，自我管理责任从父母向子女的转移是一个复杂的、个体化的过程。需要针对儿童期的各种长期疾病开展进一步研究，以探讨儿童、父母和专业人员对这一过程的看法，以及随着责任的变化家庭需要哪些支持。
