Bentley Brenda, O'Connor Moira
1 School of Health Professions, Murdoch University, Murdoch, Western Australia , Australia.
J Palliat Med. 2015 Mar;18(3):241-5. doi: 10.1089/jpm.2014.0320. Epub 2014 Dec 17.
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.
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.
This qualitative study used a social constructionist framework. Twenty-two bereaved family carers of people with motor neurone disease (MND) and cancer were interviewed in Western Australia.
Most family carers (86%) feel comfortable being interviewed about the death of their family member within the first 5 months of bereavement, with 43% reporting they could be interviewed within weeks after death. Family carers reported that recall would be better earlier in bereavement and felt it may be helpful to them to talk about their experiences earlier. They said bereaved people should be allowed to decide for themselves when to be involved in an interview.
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.
对失去亲人的家庭照顾者进行访谈,以探究逝者临终体验,这对姑息治疗研究人员来说是重要工具,但在照顾者悲痛且脆弱时与其接触的伦理问题常常引发争议。
本研究旨在探讨失去亲人的家庭照顾者对于参与有关其家庭成员临终及死亡情况研究访谈的最合适时间的见解。
本定性研究采用社会建构主义框架。在西澳大利亚对22名运动神经元病(MND)和癌症患者的失去亲人的家庭照顾者进行了访谈。
大多数家庭照顾者(86%)认为在丧亲后的前5个月内接受有关其家庭成员死亡情况的访谈会感到自在,43%的照顾者表示在亲人去世后的几周内就可以接受访谈。家庭照顾者报告称,在丧亲早期回忆会更好,并且觉得早点谈论他们的经历可能对他们有帮助。他们说应该允许丧亲者自己决定何时参与访谈。
这些发现表明,当允许丧亲者自行选择访谈时间,即从其家庭成员去世几周后开始时,对研究人员而言,与丧亲者的访谈可能最有成效,对家庭照顾者也有益。