父母在社区医疗系统中接受儿科姑息治疗的经历：一项定性研究。
Parents' experiences of paediatric palliative care in the community healthcare system: a qualitative study.
作者信息
Rud Stine Andreassen, Skagestad Eirin, Aasebø Hauken May
机构信息
Center for Crisis Psychology, Faculty of Psychology, University of Bergen, Bergen, Norway.
Center for Crisis Psychology, Faculty of Psychology, University of Bergen. Møllendalsbakken 9, Postbox 7807, Bergen, 5020, Norway.
出版信息
Palliat Care Soc Pract. 2023 Aug 28;17:26323524231193036. doi: 10.1177/26323524231193036. eCollection 2023.
BACKGROUND
Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the family. Traditionally, most PPC has been provided at a specialist healthcare level, but research indicates that most families wish to spend as much time at home as possible. However, we have limited knowledge of PPC in community healthcare, especially from the parent's perspective. This knowledge is important to provide optimal home-based PPC.
OBJECTIVES
To explore parents' experiences of PPC within the community healthcare system.
DESIGN
Qualitative study with an interpretive descriptive design.
METHODS
In all, 11 parents of children with different life-limiting illnesses were interviewed after the child's death using a semi-structured interview guideline. Data were analysed using systematic text condensation. Consolidated criteria for reporting qualitative research (QOREQ) was followed.
RESULTS
The parents' experiences were captured in five main themes: (i) 'Interaction with hospital and community services', (ii) 'Parents did not always get the help they needed', (iii) 'The child's needs became increasingly complex', (iv) 'When the end came' and (v) 'The parents asked for an ordinary life in an unordinary situation'. Each main theme was further elaborated by two subthemes.
CONCLUSION
Overall, the parents experienced PPC in the community as limited and fragile, and as lacking flexibility, coordination and professional competence related to the children's complex needs. There appears to be potential for improvement in PPC through improved care coordination between the hospital and the community healthcare services, involving the community healthcare system at an early timepoint in the illness trajectory, including a family focus, and providing accessibility, flexibility and care coordination of community services.
REGISTRATION AND REPORTING GUIDELINES
The study is registered in the institutional system for research project (RETTE; ID number F2082).
背景
孩子患有危及生命的疾病这种情况相对少见，会给家庭带来多方面的负担。儿科姑息治疗旨在维持患病儿童及其家庭的生活质量。传统上，大多数儿科姑息治疗是在专科医疗保健层面提供的，但研究表明，大多数家庭希望尽可能多地在家中度过时光。然而，我们对社区医疗保健中的儿科姑息治疗了解有限，尤其是从家长的角度。这种了解对于提供最佳的居家儿科姑息治疗很重要。
目的
探讨家长在社区医疗保健系统中接受儿科姑息治疗的经历。
设计
采用解释性描述设计的定性研究。
方法
总共对11名孩子患有不同危及生命疾病的家长在孩子去世后进行了访谈，使用半结构化访谈指南。数据采用系统文本浓缩法进行分析。遵循定性研究报告的统一标准（COREQ）。
结果
家长的经历归纳为五个主要主题：（i）“与医院和社区服务的互动”，（ii）“家长并非总能得到所需帮助”，（iii）“孩子的需求日益复杂”，（iv）“临终时刻”以及（v）“家长在特殊情况下渴望平凡生活”。每个主要主题又进一步细分为两个子主题。
结论
总体而言，家长们体验到社区中的儿科姑息治疗有限且脆弱，缺乏与孩子复杂需求相关的灵活性、协调性和专业能力。通过改善医院与社区医疗保健服务之间的护理协调、在疾病进程的早期阶段让社区医疗保健系统参与进来（包括以家庭为重点）以及提供社区服务的可及性、灵活性和护理协调，儿科姑息治疗似乎有改进的潜力。
注册与报告指南
该研究已在机构研究项目系统（RETTE；ID编号F2082）中注册。
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