Child Health Evaluative Sciences (M.F., F.B., S.A., S.M., K.E.N.), SickKids Research Institute, Toronto, Ontario, Canada.
Clinical Operations (V.C.), IQVIA, Mississauga, Ontario, Canada.
J Pain Symptom Manage. 2024 Sep;68(3):237-245.e5. doi: 10.1016/j.jpainsymman.2024.05.023. Epub 2024 May 28.
Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement.
To describe the skills that caregivers developed as they gained experience making medical decisions.
Eligible caregivers had a child who met referral criteria for their centre's Complex Care program for >1 year, were adults responsible for their child's medical decisions, and spoke English or a language with an available interpreter. We followed a semistructured interview guide to ask caregivers to describe and reflect on two challenging medical decisions that they made for their child-one early and one recent. Guided by interpretive description, we identified and refined themes in an iterative process.
We conducted 15 interviews with 16 parents (14 [88%] women, two [13%] men) of a child with medical complexity (aged 1-17 years). Parents described 1) becoming more adept at managing decisional information, 2) recognizing the influence of the decision's context, 3) building stronger relationships with providers, and 4) becoming more effective at guiding their child's care as a decision-maker. As parents built these skills, they developed a greater sense of agency and confidence as decision-makers.
Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers.
患有复杂疾病的儿童有大量的医疗需求，他们的照顾者必须就他们的护理做出许多具有挑战性的决策。随着时间的推移，照顾者通常会更多地参与决策，但尚不清楚他们发展了哪些技能来促进这种参与。
描述照顾者在积累医疗决策经验的过程中所发展的技能。
符合条件的照顾者的孩子符合其中心复杂护理项目的转诊标准已超过 1 年，是负责孩子医疗决策的成年人，并且会说英语或有口译员的语言。我们遵循半结构化访谈指南，要求照顾者描述并反思他们为孩子做出的两个具有挑战性的医疗决策，一个是早期的，一个是最近的。在解释性描述的指导下，我们在迭代过程中确定并完善了主题。
我们对 16 名患有复杂疾病的儿童（年龄 1-17 岁）的父母（14 名[88%]女性，2 名[13%]男性）进行了 15 次访谈。父母描述了 1）在管理决策信息方面更加熟练，2）认识到决策背景的影响，3）与提供者建立更牢固的关系，以及 4）作为决策者更有效地指导孩子的护理。随着父母建立这些技能，他们作为决策者的代理感和信心也增强了。
随着时间的推移，患有复杂疾病的儿童的父母会随着相关技能的获得，改变他们处理决策的方式。这些发现可以为支持新照顾者技能建设的干预措施的发展提供信息。
