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 benefit...
| Published in: | Palliative Medicine Vol. 38; no. 4; pp. 471 - 485 |
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| Main Authors: | , , , , , , , , , , , , |
| Format: | research tables/charts Journal Article |
| Published: |
Sage Publications Inc.
Apr2024
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=176694274&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 176694274 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 02692163 31I jtl: Palliative Medicine issn: 02692163 maglogo: Y pubinfo: dt: Apr2024 vid: 38 iid: 4 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 176694274 175998811 176694274 176694274 10.1177/02692163241234797 176694274 ppf: 471 ppct: 14 formats: tig: atl: 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 aug: au: Scott, Hannah May Coombes, Lucy Braybrook, Debbie Harðardóttir, Daney Roach, Anna Bristowe, Katherine Bluebond-Langner, Myra Fraser, Lorna K Downing, Julia Farsides, Bobbie Murtagh, Fliss EM Ellis-Smith, Clare Harding, Richard affil: King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK sug: subj: Outcome Assessment Patient-Reported Outcomes Evaluation Critical Illness In Infancy and Childhood Critical Illness In Adolescence Program Implementation Pediatric Care Palliative Care Risk Assessment Human Female Male Child Adolescence Qualitative Studies Interviews Cross Sectional Studies Purposive Sample Semi-Structured Interview Hospitals Implementation Science Consent (Research) Data Analysis Software Thematic Analysis Funding Source Child: 6-12 years Adolescent: 13-18 years Female Male ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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