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Understanding what matters to young people with life-limiting and life-threatening conditions: a qualitative study to inform the development of a young person end-of-life capability measure

Author

Listed:
  • Floredin, Isabella
  • Husbands, Samantha
  • Neilson, Susan
  • Mitchell, Paul Mark
  • Coast, Joanna

Abstract

End-of-life care encompasses a range of services aimed at delivering holistic interventions. Yet, economic evaluations of such services have tended to be focused on health-related outcomes, which may be too narrow to adequately capture outcomes at the end of life. Capability measures aim to capture wider outcomes focusing on what people can do and be in their lives. Capability measures are not yet available for children and young people at the end of life. This study aimed to identify important capabilities for young people aged 14–25 years across the end-of-life trajectory, to inform attribute development for a capability measure for use in economic evaluation of interventions at the end of life. Twenty-one in-depth interviews were undertaken with young people aged 14–25 years with a life-limiting or life-threatening condition (n = 6), parents or guardians (n = 6), and bereaved family members (n = 9) in England and Wales between May 2021–September 2022. Interviews focused on what is important to the young people now and in the future. Constant comparative analysis methods were used to explore capabilities and factors influencing capability achievement (conversion factors). Seven capabilities were generated: Experience and enjoy; Independence; Freedom from physical suffering; Freedom from emotional suffering; Formal care and support; Control; Identity. Five conversion factors were generated: Access to care and support; Continuity and consistency in care and support; Communication with services; Coordination between services; and COVID-19. Findings can inform attribute development for a young person capability measure for use in economic evaluation capturing the broader outcomes of end-of-life care.

Suggested Citation

  • Floredin, Isabella & Husbands, Samantha & Neilson, Susan & Mitchell, Paul Mark & Coast, Joanna, 2025. "Understanding what matters to young people with life-limiting and life-threatening conditions: a qualitative study to inform the development of a young person end-of-life capability measure," Social Science & Medicine, Elsevier, vol. 383(C).
    • Handle: RePEc:eee:socmed:v:383:y:2025:i:c:s0277953625006665
    DOI: 10.1016/j.socscimed.2025.118335
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    References listed on IDEAS

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    1. Samantha Husbands & Paul Mark Mitchell & Joanna Coast, 2024. "Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 17(3), pages 219-227, May.
    2. Mendwas Dzingina & Irene J. Higginson & Paul McCrone & Fliss E. M. Murtagh, 2017. "Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(3), pages 353-365, June.
    3. Husbands, Samantha & Mitchell, Paul Mark & Kinghorn, Philip & Byford, Sarah & Breheny, Katie & Bailey, Cara & Anand, Paul & Peters, Tim J. & Floredin, Isabella & Coast, Joanna, 2024. "The development of a capability wellbeing measure in economic evaluation for children and young people aged 11-15," Social Science & Medicine, Elsevier, vol. 360(C).
    4. Kelly Hall & Philip Kinghorn, 2022. "Measuring Outcomes in Social Care," Springer Books, in: Richard Hazenberg & Claire Paterson-Young (ed.), Social Impact Measurement for a Sustainable Future, edition 1, chapter 12, pages 229-246, Springer.
    5. Pickles, Kristen & Lancsar, Emily & Seymour, Janelle & Parkin, David & Donaldson, Cam & Carter, Stacy M., 2019. "Accounts from developers of generic health state utility instruments explain why they produce different QALYs: A qualitative study," Social Science & Medicine, Elsevier, vol. 240(C).
    6. Joanna Coast & Cara Bailey & Rosanna Orlando & Kathy Armour & Rachel Perry & Louise Jones & Philip Kinghorn, 2018. "Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(5), pages 539-546, October.
    7. Joanna Coast & Hareth Al‐Janabi & Eileen J. Sutton & Susan A. Horrocks & A. Jane Vosper & Dawn R. Swancutt & Terry N. Flynn, 2012. "Using qualitative methods for attribute development for discrete choice experiments: issues and recommendations," Health Economics, John Wiley & Sons, Ltd., vol. 21(6), pages 730-741, June.
    8. Sabina Alkire, 2015. "The Capability Approach and Well-Being Measurement for Public Policy," OPHI Working Papers ophiwp094.pdf, Queen Elizabeth House, University of Oxford.
    9. repec:qeh:ophiwp:ophiwp094 is not listed on IDEAS
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