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Oscillations, boundaries and ethical care: Social work practitioner-researcher experiences with qualitative end-of-life care research
Qualitative Social Work ( IF 1.691 ) Pub Date : 2021-09-07 , DOI: 10.1177/14733250211045113
Felicity Moon 1, 2 , Christine Mooney 2, 3 , Fiona McDermott 2, 4 , Peter Poon 2, 5 , David W Kissane 2
Affiliation  

Policy and research acknowledge that the quality of end-of-life care in hospitals can be poor, with families reporting significant concerns regarding physical and psychosocial care. In order to design appropriate evidenced-based care approaches, we conducted qualitative research examining the perspectives of bereaved families of patients who received end-of-life care in our health network. This paper reports on ethical dilemmas facing practitioner-researchers conducting interviews with bereaved families. We recruited 40 bereaved family members to participate in semi-structured interviews discussing the care a loved one received while a patient under the general medicine units. Bereaved participants expressed grief, humour and anger regarding their experience, and several reported perceptions of negligent and harmful care. Irrespective of the protocols in place to mitigate distress, this posed an ethical dilemma for the practitioner-researcher as a member of the health network, who needed to balance clinical and research roles when responding to distress. The practitioner-researcher’s own bias and assumptions emerged when analysing families’ distressing recollections. More broadly, the issues discussed have clinical implications for models of hospital bereavement support. Participants’ use of photos and mementos jointly served to include the presence of the deceased in the research interview, but also highlighted the potential to utilise visual methods to examine sensitive research issues. It helps every practitioner-researcher to distinguish between research-oriented goals and clinical responsibilities to care provision as they consider their human research ethics application before beginning any research.



中文翻译:

波动、界限和伦理关怀:社会工作从业者-研究人员在临终关怀定性研究方面的经验

政策和研究承认,医院的临终关怀质量可能很差,家庭报告对身体和社会心理护理有很大的担忧。为了设计适当的循证护理方法,我们进行了定性研究,检查了在我们的医疗网络中接受临终护理的患者家属的观点。本文报告了从业者-研究人员在与失去亲人的家庭进行访谈时面临的道德困境。我们招募了 40 名失去亲人的家庭成员参加半结构式访谈,讨论亲人在普通医学科治疗时所接受的护理。失去亲人的参与者对他们的经历表达了悲伤、幽默和愤怒,并报告了一些疏忽和有害护理的看法。无论减轻痛苦的协议如何,这都给作为健康网络成员的从业者-研究人员带来了道德困境,他们在应对痛苦时需要平衡临床和研究角色。在分析家庭痛苦的回忆时,从业者-研究人员自己的偏见和假设出现了。更广泛地说,所讨论的问题对医院丧亲支持模型具有临床意义。参与者对照片和纪念品的共同使用有助于在研究采访中包括死者的存在,但也强调了利用视觉方法检查敏感研究问题的潜力。

更新日期:2021-09-07
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