Ryan Jennifer M, Norris Meriel, Walsh Aisling, Breen Amanda, Hensey Owen, Kerr Claire, Koppe Sebastian, Lavelle Grace, Owens Mary, Walsh Michael, Kroll Thilo, Fortune Jennifer
CP-Life Research Centre, School of Physiotherapy, RCSI University of Medicine and Health Sciences, Dublin, Ireland.
College of Health, Medicine and Life Sciences, Brunel University London, London, England, UK.
HRB Open Res. 2025 Jan 31;7:47. doi: 10.12688/hrbopenres.13912.2. eCollection 2024.
Poor transition from child- to adult-oriented healthcare may lead to negative outcomes and dissatisfaction with services in adulthood. The aim of the study was to examine how transition is provided to and experienced by young people with cerebral palsy in Ireland. This report provides integrated quantitative and qualitative findings and implications based on the totality of knowledge generated.
A convergent parallel mixed-methods study was conducted. Data were collected from people with cerebral palsy aged 16-22 years, parents, and health professionals using surveys and semi-structured interviews, which were both informed by a framework of nine key transition practices. Quantitative finding from the surveys and qualitative findings from interviews were integrated at the interpretation stage of the research using integration through joint displays. Implications were developed through discussions with health professionals, young people, and parents.
Surveys were completed by 75 young people/parents and 108 health professionals. Interviews were conducted with 13 young people, 14 parents, and 27 health professionals. There was complementarity between quantitative and qualitative findings indicating lack of a named worker, limited information provision, insufficient self-management support, no opportunity to meet the adult team, limited contact with the general practitioner, and no opportunity for attending formal life skills training. There was dissonance between quantitative and qualitative findings regarding appropriate level of parental involvement. Quantitative findings identified limited promotion of health self-efficacy and a lack of senior managers responsible for transition. These practices were not described in the qualitative findings.
Implications of integrated findings include the need for a standardised transition pathway, intentional actions to enable parents and young people to adapt to changing roles, provision of information in a collaborative and phased approach, a common understanding of self-management between young people, parents and health professionals, and the need to involve general practitioners in transition.
从以儿童为导向的医疗保健向以成人为导向的医疗保健的不良过渡可能会导致负面结果以及成年后对服务的不满。本研究的目的是调查爱尔兰脑瘫青年如何接受过渡护理以及他们的体验如何。本报告基于所产生的全部知识提供了综合的定量和定性研究结果及启示。
进行了一项收敛平行混合方法研究。使用调查问卷和半结构化访谈从16 - 22岁的脑瘫患者、父母和卫生专业人员那里收集数据，这两者均以九项关键过渡实践框架为依据。在研究的解释阶段，通过联合展示整合，将调查问卷的定量研究结果和访谈的定性研究结果进行整合。通过与卫生专业人员、年轻人和父母的讨论得出启示。
75名年轻人/父母和108名卫生专业人员完成了调查问卷。对13名年轻人、14名父母和27名卫生专业人员进行了访谈。定量和定性研究结果具有互补性，表明缺乏指定工作人员、信息提供有限、自我管理支持不足、没有机会与成人团队会面、与全科医生的联系有限以及没有机会参加正式的生活技能培训。关于父母适当参与程度的定量和定性研究结果存在不一致。定量研究结果表明健康自我效能的提升有限，并且缺乏负责过渡的高级管理人员。定性研究结果中未描述这些实践。
综合研究结果的启示包括需要标准化的过渡途径、采取有意行动使父母和年轻人适应角色变化、以协作和分阶段的方式提供信息、年轻人、父母和卫生专业人员之间对自我管理达成共识，以及需要让全科医生参与过渡过程。
