Bindley Kristin, May Anne, Pavlek Wendy, Coller Suzanne, Kalkandis Pam, Dalgleish Trish
a Supportive and Palliative Care Unit, Western Sydney Local Health District , Mt Druitt , Australia.
J Soc Work End Life Palliat Care. 2018 Apr-Sep;14(2-3):225-239. doi: 10.1080/15524256.2018.1495140.
Caregiving at the end-of-life has been associated with a range of physical, spiritual, social, and psychological outcomes, and influenced by encounters with providers of specialist palliative care. The purpose of this qualitative study was to explore experiences of bereaved carers of people with a life-limiting illness, in the context of care provided through a Western Sydney supportive and palliative care service. Thirteen bereaved caregivers participated in semi-structured, in-depth interviews. Transcripts were analyzed using a thematic approach, informed by thematic networks. Four domains appeared to mediate carer experiences: confrontations with trauma, suffering, and death; navigating transitions and boundaries and the caregiving role as liminal space; encountering connection in formal care contexts; and negotiating system issues. This study is one of the first to explore caregiver experiences within a low socioeconomic population in Western Sydney and provides a nuanced understanding of factors which may shape experiences of palliative care. Findings suggest that ongoing attention to the cultivation of skilful practitioners is warranted; able to companion caregivers in a manner attuned to the potential for trauma in the context of expected death. Additionally, findings call for investment in specialist sites of care alongside greater attention to public health approaches to palliative care.
临终关怀与一系列身体、精神、社会和心理结果相关，并受到与专科姑息治疗提供者接触的影响。这项定性研究的目的是在西悉尼支持性和姑息性护理服务所提供的护理背景下，探索患有生命有限疾病者的丧亲照顾者的经历。13名丧亲照顾者参与了半结构化的深入访谈。使用主题网络启发的主题方法对访谈记录进行了分析。四个领域似乎调节着照顾者的经历：与创伤、痛苦和死亡的对抗；应对过渡和界限以及作为阈限空间的照顾角色；在正式护理环境中建立联系；以及协商系统问题。本研究是首批探索西悉尼低社会经济人群中照顾者经历的研究之一，并对可能塑造姑息治疗经历的因素提供了细致入微的理解。研究结果表明，有必要持续关注培养熟练的从业者；能够以一种适应预期死亡背景下创伤可能性的方式陪伴照顾者。此外，研究结果呼吁在专科护理场所进行投资，同时更加关注姑息治疗的公共卫生方法。
