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-Reference-Cited by-同舟云学术

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:2024-03-13 Issue:4 Volume:38 Page:471-484
ISSN:0269-2163
Container-title:Palliative Medicine
language:en
Short-container-title:Palliat Med

Author:

Scott Hannah May¹^ORCID,Coombes Lucy¹²,Braybrook Debbie¹^ORCID,Harðardóttir Daney¹,Roach Anna¹³^ORCID,Bristowe Katherine¹^ORCID,Bluebond-Langner Myra⁴⁵^ORCID,Fraser Lorna K¹^ORCID,Downing Julia¹⁶,Farsides Bobbie⁷,Murtagh Fliss EM⁸^ORCID,Ellis-Smith Clare¹^ORCID,Harding Richard¹^ORCID

Affiliation:

1. King’s College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK

2. Royal Marsden NHS Foundation Trust, London, UK

3. University College London, London, UK

4. University College London, Louis Dundas Centre for Children’s Palliative Care, London, UK

5. Rutgers University, Camden, NJ, USA

6. International Children’s Palliative Care Network, Kampala, Uganda

7. Brighton and Sussex Medical School, University of Sussex, Brighton, UK

8. Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK

Abstract

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.

Funder

national institute for health research applied research collaboration south london

european research council

Publisher

SAGE Publications

Link

https://journals.sagepub.com/doi/pdf/10.1177/02692163241234797

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