Slade Katharine, Shaw Rachel L, Larkin Michael, Heath Gemma
Institute of Health & Neurodevelopment Aston University Birmingham United Kingdom of Great Britain and Northern Ireland.
Arts Health. 2025 Feb;17(1):39-56. doi: 10.1080/17533015.2023.2288058. Epub 2023 Nov 29.
To synthesise qualitative research exploring the care-giving experiences of parents of young people with profound and multiple learning disabilities (PMLD) and complex healthcare needs, in the transition to adulthood years.
Four databases were systematically searched: Scopus, WoS Core Collection, Medline and SciELO. Included papers were assessed for quality and thematically synthesised. Findings are presented in the form of free-verse poems.
Nineteen papers from eight countries were included. Analysis generated three themes: interdependency of parent and child, where parents retained responsibility for their child's care; apprehension regarding sharing and shifting responsibility between parents and professionals; an uncertain future in terms of care provision.
Parents are concerned about the future care of their children. Training professionals in alternative and effective communication is fundamental to successful transition. Encouraging discussions about advanced care planning may also alleviate parental concerns and ensure good outcomes for young people with PMLD.
综合定性研究，探讨重度和多重学习障碍（PMLD）及有复杂医疗需求的年轻人的父母在向成年过渡阶段的照顾经历。
系统检索四个数据库：Scopus、WoS核心合集、Medline和SciELO。对纳入的论文进行质量评估并进行主题综合分析。研究结果以自由诗的形式呈现。
纳入了来自八个国家的19篇论文。分析产生了三个主题：父母与子女的相互依存，即父母仍对子女的照顾负有责任；对父母与专业人员之间责任分担和转移的担忧；在护理提供方面不确定的未来。
父母担心子女未来的照顾问题。对专业人员进行替代性有效沟通培训是成功过渡的基础。鼓励关于预先护理计划的讨论也可能减轻父母的担忧，并确保PMLD年轻人获得良好结局。
