Ghotane Swapnil, Page Bethan, Ramachandran Rohana, Wolfe Ingrid, Fraser Lorna Katharine
Department of Women and Children's Health, King's College London, London, UK.
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK
BMJ Paediatr Open. 2025 Mar 5;9(1):e003101. doi: 10.1136/bmjpo-2024-003101.
To explore the experiences and perceptions of parents and professionals of a hospital-inpatient service for children with medical complexity (CMC).
Semi-structured qualitative interviews with parents of CMC and healthcare professionals from one hospital site in England. Data were analysed using thematic analysis.
Nine parents and 15 healthcare professionals participated. Two overarching themes were developed: (1) The service is an anchor for families and professionals and (2) The service is not a panacea. Participants valued the single point of contact for families and professionals involved in the child's care during hospital stays. Families felt heard, supported and involved in their child's care with the holistic needs of the child and family centre stage. Unclear boundaries around the role of the service and limited capacity of the team were key challenges. Professionals and families described a cliff edge for many families post hospital discharge.
A hospital-inpatient service for CMC can improve care coordination and discharge planning and help build strong relationships with parents so that they feel listened to and supported. Holistic services like this need clear boundaries and remits, as there is danger of 'mission creep'. A hospital-inpatient service should not be seen as a panacea for meeting all the needs of CMC and their families. It is critical to understand how the service integrates with the wider health and care system.
探讨患有复杂疾病儿童（CMC）的住院服务中家长和专业人员的经历与看法。
对来自英国一家医院的CMC患儿家长和医疗保健专业人员进行半结构化定性访谈。采用主题分析法对数据进行分析。
9名家长和15名医疗保健专业人员参与。形成了两个总体主题：（1）该服务是家庭和专业人员的支柱；（2）该服务并非万灵药。参与者重视在患儿住院期间为参与其护理的家庭和专业人员提供单点联系。家庭感到自己的意见被听取、得到支持并参与到孩子的护理中，孩子和家庭的整体需求处于核心地位。服务角色的界限不明确以及团队能力有限是关键挑战。专业人员和家庭描述了许多家庭出院后面临的严峻情况。
针对CMC的住院服务可以改善护理协调和出院计划，并有助于与家长建立牢固的关系，使他们感到自己的意见被听取和得到支持。这样的整体服务需要明确的界限和职责范围，因为存在“任务蔓延”的风险。住院服务不应被视为满足CMC及其家庭所有需求的万灵药。了解该服务如何与更广泛的健康和护理系统整合至关重要。
