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

An overview of the survey development process and results of this work are presented in Fig. 1.

Fig. 1figure 1

Overview of the survey instrument development process

Identification of possible items for inclusion in the survey instrumentFeasibility study

A number of hospitals and hospices have undertaken surveys of bereaved relatives through collaboration with voluntary agencies or academic partners for research or quality improvement purposes [1646,47,48]. Previous surveys of bereaved relatives in Ireland were developed to evaluate care at end of life for adults who died in specific settings such as hospitals [16, 46], while some instruments were developed for adult populations outside of the Republic of Ireland, for example in hospices with different health care policy, regulations and national standards [47, 48]. The Survey of Bereaved Relatives: VOICES MaJam was the largest survey of bereaved relatives in Ireland, undertaken in two adult acute hospitals for the purposes of quality improvement. The VOICES MaJam report specifically recommended that surveys should be undertaken on a national basis to aid understanding of the experiences of care provision at end of life and support benchmarking of end-of-life quality improvement initiatives in Ireland. The report also suggested that the structures and expertise to undertake this work already existed within the Irish healthcare system, identifying the National Care Experience Programme as one source that could lead on this work [2, 3, 16]. The Office of the Ombudsman, whose role is to examine complaints from members of the public, recommended health service providers to proactively undertake surveys of bereaved relatives to provide insight into service provision and care at end of life for the purposes of quality improvement in Irish healthcare services [24, 49]. Government and health policy, and research has therefore endorsed engaging bereaved relatives to improve the quality of care at end of life provided by health and social care staff [2, 16, 23,24,25, 28].

Literature review

The review found that surveys of bereaved relatives are undertaken by many national public health agencies, healthcare providers and academic institutions internationally [50]. Most surveys use data from bereaved relatives’ experiences of care for the purpose of evaluation of care delivered at end of life to adults [6, 10, 13, 14, 50,51,52]. Some surveys of bereaved relatives are solely focussed on the provision of care of the family and adult in the last days of life [53, 54]. Other surveys take a broader outlook, focussing not only on the provision of good palliative care in the days immediately preceding the time of death, but also care experiences in the weeks and months before the person dies, including care of their relatives at this time [19, 55,56,57,58].

The quality of care and the time period assessed varied across the survey instruments reviewed, with some focused on the quality of care delivered during the last admission within a particular healthcare setting such as a hospice or hospital, while other instruments focussed on the care provided by a particular service such as palliative care [19, 20, 55,56,57,58,59,60,61]. Some surveys took a wider population-based approach and included all bereaved people of those who died within a particular time frame, for example the last 3 months of life, using death registration or a national health data set to access the sample population [15, 50, 51, 62,63,64]. The mode of administration varied across surveys reviewed, with the majority utilising a questionnaire and postal mode of administration including reminders to non-responders [15, 20, 59,60,61, 64, 65]. An exception to this is the National Audit of Care at End of Life in England, where the method of response is online only with no reminders being sent [13]. Some surveys also offered the opportunity to respond by telephone [19, 66]. An overview of international surveys of bereaved relatives, their objectives, population surveyed, reporting outputs of each survey and their operational status is outlined in supplementary information Table 2. Further details on the methods and results of this review are published elsewhere [50]. The review informed the identification of the target population for the survey, as well as the most appropriate methodological approach.

Expert panel Programme board review

Prior to undertaking further work on the survey instrument development, the expert panel Programme Board was convened and met on two occasions to review the next steps and recommended based on the evidence of the work undertaken that the survey instrument should:

be a population based survey if access to the national death registration data set is made available to undertake this work, similar to surveys undertaken in England [15, 64], Japan [20, 59,60,61] and New Zealand [50, 62, 65,66,67].

seek to evaluate the experience of care delivered in the last 3 months of life as this is a defined period which is viewed as important for people approaching end of life and also care in the last days of life [6, 15, 50, 62, 64,65,66,67,68,69]

seek to evaluate the experience of care in all settings of care at end of life; that is home, hospital, nursing home / residential care facilities and inpatient hospice [15, 50, 62, 64,65,66,67,68,69]

seek to review the experiences of care associated with the deaths of adults only, therefore excluding the deaths of children. This was based on the international evidence that all surveys reviewed excluded children [15, 19, 20, 50, 59,60,61, 64, 65]. Exclusion of children also centred on the rationale that adult health service provision, health policy and bereavement supports services differ significantly to those of children in the Republic of Ireland [70, 71].

exclude people who died suddenly and unexpectedly, due to the late registration of people who died suddenly or traumatically by suicide or homicide due to coronial investigations, as well as the fact that questions focussed on the quality of care delivered in the time leading up to the death would be irrelevant to this population [6, 15, 21, 50, 64, 65, 68, 69].

Based on the scoping review and feasibility study, the expert panel proposed the following with regard to mode of administration based on the international [50] and national [2, 46] evidence that this is acceptable to bereaved relatives noting the sensitive nature of such a survey:

adopt a questionnaire and postal mode of administration to bereaved relatives

no active solicitation or contact with bereaved relatives that registered the death would take place until 3 months after the death

the inclusion of bereavement support information in all correspondence related to the survey’s administration

to increase response rates, include two reminders to non-responders with a survey questionnaire also included with the second reminder

include an option for participants to complete an online version of the questionnaire.

Focus groups

Eleven Focus group interviews were undertaken with a purposive sample of key stakeholders to explore the aspects of care considered to be most important for inclusion within the National End of Life Survey instrument. Sixty eight people took part from a broad range of roles, professional backgrounds and sectors as outlined in outlined in supplementary information table 1. Numerous themes were identified as being important for inclusion in each of the different settings of care (home, acute hospital, nursing home / residential care facility and inpatient hospice unit). Table 1 outlines the overarching themes and subthemes, the frequency with which subthemes were mentioned by focus group participants relating to what matters most for inclusion in the survey instrument according to the key stakeholders who participated in the focus groups.

Table 1 Themes identified by focus group membersGap analysis

In total, 12 survey instruments were reviewed within the gap analysis with a total of 588 survey items:

End of Life Care Provision by South Island Health Care Services survey and Auckland District Health Board, Survey of Bereaved People (VOICES 2017), New Zealand, (2018)

National Audit of Care at the End of Life (NACEL), England, (2021)

National Survey of Bereaved People (VOICES), England, (2015)

Care of the Dying Evaluation (CODE) survey, England, (2013)

FAMCARE survey, Association for Palliative Medicine of Great Britain and Ireland, (2019)

Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice survey, Centers for Medicare & Medicaid Services, United States Department of Health and Human Services, USA, (2020)

Bereaved Family Survey (BFS) United States Department of Veterans Affairs, USA, (2019)

Japan Hospice and Palliative Care Evaluation (J-HOPE) surveys consisting of the Care Evaluation Scale (CES) and the Good Death Inventory (GDI), Japan, (2020)

Survey for Relatives / Friends on End of Life Care, Ireland, (2014)

Survey of Bereaved Relatives: VOICES MaJam, Ireland, (2017)

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