Gender, Culture & Health Research Unit: PsyHealth, School of Psychology, University of Western Sydney, NSW, Australia.
Health Soc Care Community. 2009 May;17(3):274-82. doi: 10.1111/j.1365-2524.2008.00828.x.
This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones' death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.
这项定性研究探讨了丧亲的非正式癌症护理者对在家中提供姑息治疗的体验所构建和赋予的积极意义，这些护理者能够将他们的护理体验作为一个整体来理解。作为一项更大的混合方法研究的一部分，22 名丧亲的癌症护理者接受了采访，该研究旨在调查非正式癌症护理的体验。参与者是通过癌症支持小组和癌症诊所以及新南威尔士癌症委员会招募的。从建构主义的角度，使用主题分析方法对姑息护理积极方面的叙述进行了分析。研究结果表明，这些丧亲的护理者给出的叙述强调了在家中提供直接姑息护理所带来的益处和满足感，使他们能够构建与参与死亡过程相关的积极意义，并因此对他们亲人的死亡和他们的失落感赋予主观上有意义的解释。这包括对做了好事的回报感、满足患者的表达需求、尽可能地继续正常生活、改善关系状况以及满足做正确事情的文化期望。在死亡点在场被认为是有回报的，因为它促进了道别的过程，促进了他人的参与，提供了了结，并具有精神体验。这些发现表明，在姑息治疗背景下提供非正式癌症护理存在积极和有益的方面，这些方面对于护理者在努力应对他们所经历的困难和失落感时是相关和有意义的。这对预防和减轻非正式癌症护理者的痛苦有影响，并表明未来的研究不应忽视提供姑息治疗的积极方面。
