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

被引：4

作者：

Scott, Hannah May ^{[1
,9
]}

Coombes, Lucy ^{[1
,2
]}

Braybrook, Debbie ^{[1
]}

Haroardottir, Daney ^{[1
]}

Roach, Anna ^{[1
,3
]}

Bristowe, Katherine ^{[1
]}

Bluebond-Langner, Myra ^{[4
,5
]}

Fraser, Lorna K. ^{[1
]}

Downing, Julia ^{[1
,6
]}

Farsides, Bobbie ^{[7
]}

Murtagh, Fliss E. M. ^{[8
]}

Ellis-Smith, Clare ^{[1
]}

Harding, Richard ^{[1
]}

机构：

[1] Cicely Saunders Inst, Kings Coll London, Florence Nightingale Fac Nursing Midwifery & Palli, Midwifery & Palliat Care, London, England

[2] Royal Marsden NHS Fdn Trust, London, England

[3] UCL, Goldsmiths Coll, London, England

[4] UCL, Louis Dundas Ctr Childrens Palliat Care, London, England

[5] Rutgers State Univ, Camden, NJ USA

[6] Int Childrens Palliat Care Network, Kampala, Uganda

[7] Univ Sussex, Sussex Med Sch, Brighton BN1 9QG, E Sussex, England

[8] Univ Hull, Wolfson Palliat Care Res Ctr, Hull York Med Sch, Kingston Upon Hull, England

[9] Kings Coll London, Cicely Saunders Inst, Florence Nightingale Fac Nursing Midwifery & Palli, Bessemer Rd, London SE5 9RS, England

来源：

PALLIATIVE MEDICINE | 2024年 / 38卷 / 04期

基金：

欧洲研究理事会;

关键词：

Paediatrics; palliative care; children; implementation science; patient reported outcome measures; patient-centred outcomes research; PATIENT-REPORTED OUTCOMES; PEDIATRIC PALLIATIVE CARE; OF-LIFE; CLINICAL-PRACTICE; ADVANCED CANCER; SYMPTOMS; FEASIBILITY; RELIABILITY; PEDSQL(TM); ONCOLOGY;

D O I：

10.1177/02692163241234797

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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.

引用

页码：471 / 484

页数：14

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