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Designing a co‐productive study to overcome known methodological challenges in organ donation research with bereaved family members

Datos Bibliográficos

ID19508618
AutoresJane Noyes (0000-0003-4238-5984, School of Social Sciences Bangor University Bangor UK, autor de correspondencia), Leah Mclaughlin (School of Social Sciences Bangor University Bangor UK, autor de correspondencia), Kàren Morgan (0000-0001-6193-1747, Major Health Conditions Policy Team, Directorate of Health Policy, Health and Social Services Group Welsh Government Cardiff UK, autor de correspondencia), Abigail Roberts (0000-0001-7763-136X, NHS Blood and Transplant, North West Regional Office Liverpool UK, autor de correspondencia), Michael Stephens (0000-0002-9735-5881, Department of Nephrology and Transplantation Cardiff and Vale University Health Board, University Hospital of Wales Cardiff UK, autor de correspondencia), Janette Bourne (Wales Director of Services ‐ Cruse Bereavement Care Cymru Caerphilly UK, autor de correspondencia), Michael Houlston (Parents of the Youngest Organ Donor in Wales and Lobbyists for Organ Donation Wales UK, autor de correspondencia), Jessica Houlston (Parents of the Youngest Organ Donor in Wales and Lobbyists for Organ Donation Wales UK, autor de correspondencia), Sarah Thomas (0000-0002-5648-7271, The Centre of sign‐Sight‐Sound Conwy UK, autor de correspondencia), Revd Gethin Rhys (Churches Together in Wales National Assembly Policy Officer Cardiff UK, autor de correspondencia), Bethan Moss (NHS Blood and Transplant, South Wales, South West and South Central Cardiff UK, autor de correspondencia), Sue Duncalf (NHS Blood and Transplant, North West Regional Office Liverpool UK, autor de correspondencia), Dawn Lee (0000-0003-4027-8456, NHS Blood and Transplant, North West Regional Office Liverpool UK, autor de correspondencia), Rebecca Curtis (0000-0003-2538-3936, Statistics and Clinical Studies NHS Blood and Transplant Stoke Gifford UK, autor de correspondencia), Susanna Madden (Statistics and Clinical Studies NHS Blood and Transplant Stoke Gifford UK, autor de correspondencia), Phillip Walton (NHS Blood and Transplant, South Wales, South West and South Central Cardiff UK, autor de correspondencia)
Año2019
Volumen22
Número4
Páginas824-835
Fecha de publicación2019-08-01
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaHealth Expectations (JOURNAL)
Identificadores de la revistaISSN: 1369-6513 • E-ISSN: 1369-7625
EditorialWiley (PUBLISHER • GB)
DOI10.1111/hex.12894
PMID31058410
OpenAlexW2944593215
IdiomaEN
Citas recibidas3
Referencias citadas12

BACKGROUND: Co-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. OBJECTIVE: To address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. DESIGN: Two-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. SETTING AND PARTICIPANTS: NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. RESULTS: Co-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. DISCUSSION AND CONCLUSION: Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes

Business · Donation · Observational study · Organ donation · Political science · Public relations · Ethics in Clinical Research · Medicine · Mental Health and Patient Involvement · Nursing · Organ Donation and Transplantation · Psychology · Marketing · Transplantation

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Obras citantes distintas3
Citas por año0,5
Intervalo de citas2020 - 2023 (4)
Velocidad de citaciónhistorical
Altamente citadoNo
Tipos de citaNeutras: 3
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