The research team met regularly throughout data analysis to discuss emerging ideas and to identify alternative interpretations of the text. An audit trail was maintained via summaries and memos to show how data abstraction and reduction were conducted. Fittingness was achieved by reviewing the findings in the light of other research in the area and by using the literature to support or refute the concepts emerging from the data. At the time of the interviews, family carers had been bereaved for 3 to 17 months mean, 6.
See Table 1 for further demographic information.
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Nine family carers said they could have told their story within weeks of their family member dying, five said 2 to 3 months, four said 4 to 5 months, two said 6 months, and one said 1 year. One person was not able to answer the question. Family carers who expressed a preference for earlier interviews gave more detailed recall as their main reason, noting that they tried to forget painful details over time. It's time to get over it.
Some family carers said they could be approached at any time because they weren't susceptible to, or did not experience, distress. I probably would have preferred it a bit earlier. Several participants mentioned that they found it helpful to talk about their family member's death, and some mentioned they could not talk with their own families.
Talking with Bereaved People: An Approach for Structured and Sensitive Communication
Several participants mentioned they were grieving, and would continue to grieve, but it was not a reason to delay sharing their stories. Several participants expressed that it may be important that some amount of time passes before being interviewed in order to gain perspective.
One participant suggested a staged approach would be best whereby people say yes and then get involved at a time that suits them. A key reason for the preference for interviews soon after the death was clearer recall of details. At first this appears to be a pragmatic reason, but reflecting on the quotes it is evident that some participants actively try to put thoughts about the death out of their minds and don't want to remember as time passes. This finding suggests that, at least for some people, there is a preference for recalling details of the death of the family member earlier rather than waiting until months later to answer questions.
This is consistent with findings that indicate better recall of details soon after an event. Casarett and coworkers' 29 finding that the timing of survey administration after death did not affect distress levels or response rates, even very soon after death, is also supported. A further reason given by participants for preferring an interview soon after the death was the desire to talk about their experiences and the experiences of their family member at the end of life.
For a few participants, having the opportunity to talk was helpful, supporting findings that the bereaved often experience interview participation as positive. No distress was reported by participants as a result of the interviews in the current study, which adds weight to the emerging body of evidence that suggests participation in research does not necessarily lead to distress, 19 , 29 , 33 , 39 and supports the challenge to members of IRBs and HRECs to review their guidelines and decision-making processes on the issues, risks, and benefits surrounding bereavement research.
Some participants in the current study specified that they would prefer to participate in an interview after some time had passed. Interestingly, the main reason given for waiting was time for reflection rather than distress. This mirrors findings from Hynson et al. Reasons for these preferences were not explored by the authors.
Finally, and importantly, family carers in this study acknowledged that everyone is different and people should decide about participation for themselves. These findings indicate that interviews with the bereaved may be most fruitful for researchers, and beneficial to participants, when bereaved people are supported to make their own decision beginning weeks after the death of their family member.
This supports Hynson et al. This finding supports recent theoretical positions in the area of grief describing grief as unique and multifaceted. The dual process model articulates that people oscillate between confrontation and avoidance of their loss. Such an approach would acknowledge the unique needs of individuals.
Participants in Hynson et al. Hynson et al. However, Beck and Konnert 19 caution that any safeguards adopted are in proportion to potential risks, and that a blanket set of guidelines for all bereavement research would be counter-productive.
Talking With Bereaved People
Family cares can provide valuable information to palliative care services about the end-of-life experiences of their family member, but we need to ensure that gatekeeping does not prevent valuable research from going ahead. Currently, there appears to be a universal assumption that bereaved people are vulnerable and need time to grieve before being approached to participate in research interviews. However, the findings from this research suggest that participation in research is not necessarily distressing.
The supposition, particularly by IRBs and HRECs, that a certain amount of time needs to pass before approaching potential participants is also challenged as we found that many participants would prefer to be contacted within weeks of the death of their family member for better recall as details fade over time, and also to tell their stories.
This qualitative study used a social constructionist framework. These findings indicate that interviews with the bereaved may be most fruitful for researchers and beneficial to family carers when they are allowed to make the choice about timing for themselves, beginning weeks after the death of their family member. The snippet could not be located in the article text. This may be because the snippet appears in a figure legend, contains special characters or spans different sections of the article. J Palliat Med. PMID: Find articles by Brenda Bentley. Find articles by Moira O'Connor.
Corresponding author. Accepted Nov 4. Copyright , Mary Ann Liebert, Inc. This article has been cited by other articles in PMC.
Abstract Background: Interviews with bereaved family carers to examine the end-of-life experience of the deceased are important tools for palliative care researchers, but the ethics of approaching the bereaved when they are grieving and vulnerable is often debated. Introduction R esearch that seeks to understand the end-of-life experience of patients is hampered by several factors. Objective The aim of this study was to explore the insights of bereaved family carers about the most appropriate time to be involved in a research interview about the end of life and death of their family member.
Methods Design This study was part of a larger study exploring the end of life and death of participants' family members. Participants and recruitment Bereaved family carers of people who died from motor neurone disease MND and cancer were recruited. Procedure Audio-recorded semi-structured interviews were conducted by a researcher who is an experienced interviewer with a background in counseling.
Results Demographics At the time of the interviews, family carers had been bereaved for 3 to 17 months mean, 6. Table 1. Characteristics of Study Participants. Open in a separate window.
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Timing Nine family carers said they could have told their story within weeks of their family member dying, five said 2 to 3 months, four said 4 to 5 months, two said 6 months, and one said 1 year. Not distressing if soon after death Some family carers said they could be approached at any time because they weren't susceptible to, or did not experience, distress. I would have been fine. Wanting to talk about it so soon after death would be helpful Several participants mentioned that they found it helpful to talk about their family member's death, and some mentioned they could not talk with their own families.
Grief is ongoing so soon after death is fine Several participants mentioned they were grieving, and would continue to grieve, but it was not a reason to delay sharing their stories. Need time to reflect so later is better Several participants expressed that it may be important that some amount of time passes before being interviewed in order to gain perspective. Conclusion Family cares can provide valuable information to palliative care services about the end-of-life experiences of their family member, but we need to ensure that gatekeeping does not prevent valuable research from going ahead.
Author Disclosure Statement No conflicting financial interests exist. References 1. J Res Nurs ; 10 — J Chronic Dis ; 39 —35 [ PubMed ]. Soc Sci Med ; 56 — [ PubMed ]. J Clin Oncol ; 15 — [ PubMed ]. Palliat Med ; 17 — [ PubMed ]. This may include information about practical arrangements and local support services, supportive conversations with staff, and in some cases referral for counselling or more specialist support. Department of Health quality markers and measures for end of life care 1. NHS National End of Life Care Programme draft Spiritual support and bereavement care quality markers and measures for end of life care: bereavement care 1, 3, 4 and 5.
Outcome: Local data collection. Office for National Statistics ONS National bereavement survey VOICES includes questions on whether enough help and support was provided by the healthcare team to the family or carer at the actual time of death, whether staff dealt with them in a sensitive manner, and whether they have since talked to anyone from health and social services or from a bereavement service, about their feelings about the person's illness and death.
People closely affected by a death may include care home residents, staff and volunteers, staff from a variety of health and social care organisations, as well as family members and carers, including children. Children may need particular tailored support.
Families and carers of people who have died suddenly or in an unexpected way, as well as those who were expecting the death, should have access to information and support appropriate to their circumstances. Draft Spiritual support and bereavement care quality marker 2 on bereavement support recommends that bereaved people are offered support at the time of death that is culturally and spiritually appropriate, immediate, and available shortly afterwards.
Bereavement support may be not be limited to immediately after death, but may be required on a longer-term basis and, in some cases, may begin before death. A stepped approach to emotional and bereavement support may be appropriate, which could include but is not limited to:. A model of bereavement support is detailed in NICE cancer service guidance recommendation Further guidance on bereavement support is available from When a patient dies: guidance for professionals on developing bereavement services Department of Health People closely affected by a death should be able to access all support within an appropriate physical environment that facilitates sensitive communication.
Quality standard Tools and resources History Overview. Next Quality statement Care after death — bereavement support Quality statement Quality measure What the quality statement means for each audience Source guidance Data source Definitions.