Factors associated with overall satisfaction with care at the end‐of‐life: Caregiver voices in New Zealand

Frey, Rosemary; Robinson, Jackie; Old, Andrew; Raphael, Deborah; Gott, Merryn

doi:10.1111/hsc.13053

Cited by 6 publications

(8 citation statements)

References 59 publications

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“…It was, however, an ethical choice not to do so, in order not to distress or put pressure on the bereaved family members. The response rate is in line with or higher than other studies using the VOICES (SF) [ 46 – 49 ]. Nevertheless, there was a good level of engagement from those who did participate; more than half (56%) chose to leave responses to the open-ended questions.…”

Section: Discussionsupporting

confidence: 87%

Support received by family members before, at and after an ill person’s death

et al. 2021

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Background It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. Methods A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20–90 years old, 70% women) of people who died in hospital between August 2016-April 2017. Results Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. Conclusions Family members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

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Section: Discussionsupporting

confidence: 87%

Support received by family members before, at and after an ill person’s death

et al. 2021

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“…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 – 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 – 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 – 61 , 64 , 65 ].…”

Section: Resultsmentioning

confidence: 99%

“…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 – 61 ] and New Zealand [ 50 , 62 , 65 – 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 – 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 – 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 – 61 , 64 , 65 ].…”

Section: Resultsmentioning

confidence: 99%

“…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 – 61 ] and New Zealand [ 50 , 62 , 65 – 67 ].…”

Section: Resultsmentioning

confidence: 99%

“…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 – 69 ]…”

Section: Resultsmentioning

confidence: 99%

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

et al. 2023

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Background Assessing 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. Methods A 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. Results Following 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. Conclusion The 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.

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