Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Child Care Health Dev. 2022 Jul;48(4):578-587. doi: 10.1111/cch.12962. Epub 2022 Feb 1.
Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well-being. Health professionals supporting children with CP have been encouraged to focus on parental well-being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents. This study aimed to explore parents' experiences of play-based groups for children with CP and their parents, with a focus on the groups' impact on parents' well-being.
Parents of children with CP who had attended play-based groups in the year prior were recruited for this qualitative study. Semi-structured interviews were conducted, audio-recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach.
Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well-being. Four themes described mothers' experiences of the groups and the subsequent impact on their well-being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well-being. This included mothers' individual experiences of having a child with CP.
Interventions combining practical and social support for the whole family can have a positive impact on the well-being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no 'one-size-fits-all' approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP.
脑瘫(CP)是发达国家中最常见的儿童身体残疾。CP 患儿的父母会经历各种困难,从而导致其幸福感降低。支持 CP 患儿的健康专业人员一直被鼓励关注父母的幸福感,因为这是孩子基本环境的一部分。目前缺乏关于通过为孩子提供治疗性输入和为父母提供支持来全面支持整个家庭的干预措施的证据。本研究旨在探讨 CP 患儿及其父母参加基于游戏的小组活动的经验,重点是这些小组活动对父母幸福感的影响。
本定性研究招募了在过去一年中参加过基于游戏的小组活动的 CP 患儿的父母。进行了半结构化访谈,录音并逐字转录。收集了参与者的人口统计学特征作为背景信息。使用归纳主题方法进行数据分析。
对 10 位母亲进行了访谈。总的来说,母亲们对小组活动有积极的体验,并认为这些活动对她们的幸福感有重要影响。四个主题描述了母亲们对小组活动的体验以及对其幸福感的后续影响:(1)实际支持,(2)与他人建立联系,(3)过渡之旅,(4)不同的动机,不同的体验。许多因素影响了母亲们参加小组活动的体验及其对幸福感的后续影响。这包括母亲们个人养育 CP 患儿的经历。
为整个家庭提供实际和社会支持的干预措施可以对 CP 患儿的母亲幸福感产生积极影响。应该注意为每个家庭提供个性化的支持。没有“一刀切”的方法,一揽子护理可以提供多种服务,满足母亲及其 CP 患儿的不同需求。