Department of Psychology, Stellenbosch University, Private Bag X1, Matieland, Stellenbosch, 7602, South Africa.
BMC Palliat Care. 2017 Aug 14;16(1):40. doi: 10.1186/s12904-017-0222-z.
End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya.
An interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted.
Two end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues.
Findings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.
在晚期癌症中，临终沟通变得越来越困难，这不可避免地涉及到关于死亡的对话。在资源有限的地区，临终沟通的背景通常是家庭为基础的姑息治疗，主要由家庭中的女性组成，她们作为非正式照顾者发挥着关键作用。本文基于肯尼亚内罗毕的一组丧亲女性癌症家庭照顾者的回顾性叙述，考察了家庭临终对话和决策的内容和背景。
采用解释现象学分析方法探讨相关临终沟通主题。共进行了 4 次小型焦点小组访谈，共有 13 名参与者参加[n=5;n=3;n=3;n=2]。
考察了两个临终主题，即预先指示作为死亡准备和开始死亡谈话。研究结果(a)说明了家庭动态在影响临终对话和决策的性质方面的作用；(b)展示了家庭照顾者角色的过渡性质；(c)强调了家庭成员在姑息治疗中发挥关键作用与他们在处理临终问题方面准备不足之间的矛盾。
研究结果与姑息心理社会干预措施以及癌症患者及其家属的关注和决策有关。这进一步引发了关于如何在资源有限的情况下为临终护理做好家庭照顾者准备的问题。在方法论上，这些结果展示了在 IPA 研究中同时阐明个体经验、互动共同构建以及经验和意义构建过程的社会文化背景的可能性。
