What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents.

IF 3.4 3区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Patient-Patient Centered Outcomes Research Pub Date : 2025-05-25 DOI:10.1007/s40271-025-00744-8

Debbie Braybrook, Lucy Coombes, Hannah M Scott, Daney Harðardóttir, Anna Roach, Jemimah Bariuan, Clare Ellis-Smith, Julia Downing, Fliss E M Murtagh, Myra Bluebond-Langner, Lorna K Fraser, Richard Harding, Katherine Bristowe

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引用次数: 0

Abstract

Background: Globally, over 21 million children need palliative care each year. Although guidelines exist to support paediatric palliative care delivery, they are not informed by the experiences of children themselves.

Objective: We aimed to determine what constitutes good quality palliative care from the perspectives of children with life-limiting or life-threatening conditions and their parents.

Methods: We analysed semi-structured qualitative interviews using reflexive thematic analysis informed by the European Association for Palliative Care charter of palliative care for children and young people, and Bronfenbrenner's bioecological model. Participants included 26 children aged 5-17 years, and 40 parents of children aged 0-17 years, with a range of cancer and non-cancer diagnoses in nine UK paediatric palliative care services (hospitals and hospices).

Results: Quality paediatric palliative care can be both enacted or interrupted across the five domains of the bioecological model. Honest timely communication with the child and family (microsystem), and collaborative relationships between care teams and others in the child's life (mesosystem), are vital. Care experiences are negatively affected by inequities in care provision (exosystems), and society's reluctance to discuss mortality in childhood (macrosystem). Children need to enjoy what matters to them, and maintain social connections, and plan for the future, even if facing a shortened life (chronosystem).

Conclusions: Children and parents are experts in their condition and should be actively involved in care discussions, through communication tailored to the child's pace and preferences, and support advocating for and coordinating care services. Fostering strong and collaborative relationships builds trust and helps children and families to feel safe, included and supported.

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什么构成了高质量的儿科姑息治疗？儿童、青少年和父母视角的定性探索。

背景：全球每年有2100多万儿童需要姑息治疗。尽管存在支持儿科姑息治疗提供的指导方针，但这些指导方针并没有根据儿童本身的经验。目的：我们旨在从限制生命或危及生命的儿童及其父母的角度确定什么是高质量的姑息治疗。方法：采用欧洲姑息治疗协会儿童和青少年姑息治疗章程和Bronfenbrenner的生物生态模型提供的反身性主题分析，对半结构化定性访谈进行分析。参与者包括26名5-17岁的儿童和40名0-17岁儿童的父母，他们在英国9家儿科姑息治疗服务机构（医院和临终关怀院）接受了一系列癌症和非癌症诊断。结果：高质量的儿科姑息治疗可以在生物生态模型的五个领域实施或中断。与儿童和家庭（微系统）诚实及时的沟通，以及护理团队和儿童生活中其他人之间的合作关系（中系统）是至关重要的。护理经验受到护理提供不公平（外系统）和社会不愿讨论儿童死亡率（宏观系统）的负面影响。即使面对缩短的生命（时间系统），孩子们也需要享受对他们重要的事情，保持社会联系，并计划未来。结论：儿童和家长是自身状况的专家，应积极参与护理讨论，根据儿童的节奏和偏好进行沟通，支持倡导和协调护理服务。培养强大的合作关系，建立信任，帮助儿童和家庭感到安全、包容和支持。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Patient-Patient Centered Outcomes Research HEALTH CARE SCIENCES & SERVICES-

CiteScore

6.60

自引率

8.30%

发文量

审稿时长

>12 weeks

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