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

• Published in: Palliative medicine 2024-04, Vol.38 (4), p.471-484
• Main Authors: 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
• Format: Article
• Language: English
• Subjects: Anniversaries; Barriers; Benefits; Caregivers; Children; Communication; Data collection; Expectations; Families & family life; Health services; Hospice care; Hospices; Hospitals; Implementation; Interviews; Life threatening; Measures; Original; Palliative care; Parents & parenting; Patient-centered care; Pediatrics; Privacy; Professionals; Risk; Siblings; Social services; Stakeholders; Youth
• ISSN: 0269-2163; 1477-030X
• DOI: 10.1177/02692163241234797

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.