Dying, death and bereavement: developing a national survey of bereaved relatives

BMC Palliative Care

Research

Diarmuid Ó Coimín¹  Róisín Murphy²  Daniela Rohde²  Conor Foley²  Tracy O’Carroll² 

[1] Hospice Friendly Hospitals Programme, Quality and Patient Safety Directorate, Mater Misericordiae University Hospital, Eccles Street, Dublin 7, Ireland;National Care Experience Programme, Health Information and Quality Authority, George’s Court, George’s Lane, Smithfield, D07 E98Y, Dublin 7, Ireland;

关键词: End-of-life care;    Palliative care;    Quality of care;    Bereaved relatives;    Bereavement;    Dying;    Survey of bereaved people;    Mortality feedback survey;   

DOI  :  10.1186/s12904-023-01135-2

 received in 2022-07-19, accepted in 2023-02-08,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundAssessing and measuring the experience and quality of care provided is central to the improvement of care delivery of all healthcare systems. This paper reports on the development of a survey instrument to capture the experiences of care at end of life from the perspective of bereaved relatives in the Republic of Ireland.MethodsA multi-method, multi-stakeholder, sequential approach was adopted for this study. Items for inclusion in the survey instrument bank were identified through (1) a feasibility study and scoping literature review, (2) expert panel programme board review, (3) focus groups and (4) gap analysis. The following steps were undertaken to prioritise the items for inclusion in the final survey instrument: (1) a Delphi study (2) technical expert panel review (3) cognitive interviews with bereaved relatives and an (4) expert panel programme board review.ResultsFollowing an iterative process with key stakeholders, a survey instrument was developed with sections focusing on the provision of care at home, in the last nursing home / residential care facility, hospice and hospital, as well as care experience in the last 2 days of life, the relative’s experiences of care and support, the circumstances of care surrounding death and demographic information. In total, a bank of 123 questions were prioritised to be included in the National End of Life Survey instrument.ConclusionThe survey will provide a standardised national approach to capturing the experience of care of those who have died, from the perspective of bereaved relatives in the Republic of Ireland. This will allow health service providers, policy makers and regulators to gather important insights into the experiences of care at end of life and will help fulfil the requirement of healthcare services to ensure they are providing high-quality care.

【 授权许可】

CC BY   
© The Author(s) 2023

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