Hannah May Scott, Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Anna Roach, Katherine Bristowe, Myra Bluebond-Langner, Lorna K Fraser, Julia Downing, Bobbie Farsides, Fliss Em Murtagh, Clare Ellis-Smith, Richard Harding
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However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.</p><p><strong>Aim: </strong>To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions.</p><p><strong>Design: </strong>Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research.</p><p><strong>Setting/participants: </strong>A total of <i>n</i> = 26 children with life-limiting or life-threatening conditions, <i>n</i> = 40 parents/carers, <i>n</i> = 13 siblings and <i>n</i> = 15 health and social care professionals recruited from six hospitals and three children's hospices and <i>n</i> = 12 Commissioners of health services.</p><p><strong>Results: </strong>All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional.</p><p><strong>Conclusions: </strong>Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. 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引用次数: 0
摘要
背景：越来越多的证据表明，在成人姑息关怀中实施以人为本的疗效评估是有依据的。目的：确定对患有危及生命和生命垂危疾病的儿童实施以人为本的结果测量的预期益处、风险、障碍和促进因素：设计：对主要利益相关者进行横断面定性半结构式访谈研究，采用经改编的《实施研究综合框架》中的框架分析法进行分析：从六家医院和三家儿童临终关怀机构以及 12 名医疗服务专员共招募了 n = 26 名患有局限生命或危及生命疾病的儿童、n = 40 名父母/照顾者、n = 13 名兄弟姐妹和 n = 15 名医疗和社会护理专业人员：结果：所有参与者都支持未来在护理中实施以人为本的结果测量。预期的益处包括：更好地了解病人和家庭的优先事项，改善专业人员和家庭之间的沟通与合作，以及数据收集和报告的标准化。预期风险包括：增加工作人员的工作量，以及措施未按预期使用。实施障碍包括：儿童对结果测量的可接受性和可用性；家长/照护者完成测量的负担和能力；隐私问题；以及语言障碍。实施的促进因素包括：使用对儿童和家庭有意义的语言设计测量方法；确保以人为本的结果测量方法的潜在益处得到宣传，以鼓励 "接受"；由已知和可信赖的专业人员实施测量方法：结论：实施以人为本的结果测量可为患有局限生命和危及生命疾病的儿童带来潜在益处。本文提出了八项建议，以最大限度地提高实施过程中的益处并降低风险。
What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.
Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.
Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions.
Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research.
Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services.
Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional.
Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
期刊介绍：
Palliative Medicine is a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. This outstanding journal features editorials, original papers, review articles, case reports, correspondence and book reviews. Essential reading for all members of the palliative care team. This journal is a member of the Committee on Publication Ethics (COPE).
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