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

Sage Palliative Medicine & Chronic Care

This episode features Hannah Scott, (King’s College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK)

What is already known about the topic?

• Person-centred outcome measures have been shown to improve the quality of care and patient outcomes in adult palliative care when successfully implemented into routine care.
• Several factors influence implementation in adult services, but they have not been identified in care for children with life-limiting and life-threatening conditions.
• The views of stakeholders are key to successful development, implementation and use of outcome measures in practice.

What this paper adds?

• Perceived benefits of using person-centred outcome measures include enhanced understanding of what matters to patients and families, improved communication and collaborative working and standardised data collection and reporting; perceived risks include negative impacts on care and measures not being used as intended.
• Potential barriers to implementation include acceptability and usability of the measure for children, burden and capacity of patients and families to complete the measure, privacy concerns, protecting family members and language barriers; potential facilitators include explaining the benefits of person-centred outcome measures and securing ‘buy-in’, measures being implemented by known and trusted health and social care staff and the language in the measure being meaningful to children and families.
• Eight recommendations are presented to minimise risks and support successful implementation of child and family-centred outcome measures for children with life-limiting and life-threatening conditions.

Implications for practice, theory, or policy

• The benefits of person-centred outcome measures for care should be explained to children, families and professionals to facilitate buy in and successful implementation.
• Implementation strategies should be designed collaboratively with professionals to ensure implementation of person-centred outcome measures is feasible within current practice and does not impact negatively on care.
• Professionals introducing and administering the measure should be known and trusted by the child and family, and should discuss usage preference and information sharing to address any privacy concerns.

Full paper available from:

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

If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:

[e-mail]