Croker Anne, Fisher Karin, Hungerford Philip, Gourlay Jonathan, May Jennifer, Lees Shannon, Chapman Jessica
Department of Rural Health (UONDRH), The University of Newcastle, 114 - 148 Johnston Street, Tamworth, NSW 2340, Australia.
Department of Rural Health (UONDRH), The University of Newcastle, Tamworth, NSW, Australia.
Palliat Care Soc Pract. 2022 Mar 9;16:26323524221083679. doi: 10.1177/26323524221083679. eCollection 2022.
Our intention was to develop a meta-understanding of the 'human aspects' of providing palliative care. Integral to developing this meta-understanding was recognising the individuality of people, their varied involvements, situations, understandings, and responses, and the difficulty in stepping back to get a whole view of this while being in the midst of providing palliative care. We intended for this meta-understanding to inform reflections and sense-making conversations related to people's changing situations and diverse needs.
Using collaborative inquiry, this qualitative research was undertaken 'with' clinicians rather than 'on' them. Our team ( = 7) was composed of palliative care clinicians and researchers from a co-located rural health service and university. We explored our personal perceptions and experiences through a series of 12 meetings over 8 months. In addition, through five focus groups, we acccessed perceptions and experiences of 13 purposively sampled participants with a range of roles as carers and/or healthcare providers. Data were dialogically and iteratively interpreted.
Our meta-understanding of 'human aspects' of providing palliative care, represented diagrammatically in a model, is composed of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING. ATTRIBUTES OF HUMANITY are , and . ACTIONS OF CARING include , and . The meta-understanding is a framework to keep multiple complex concepts 'in view' as they interrelate with each other.
Our meta-understanding, highlighting 'human aspects' of providing palliative care, has scope to embrace complexity, uncertainty, and the interrelatedness of people in the midst of resourcing, requiring, and engaging in palliative care. Questions are posed for this purpose. The non-linear diagrammatic representation of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING facilitates multiple ways of engaging and revisiting palliative care situations or navigating changes within and across them.
我们旨在对提供姑息治疗的“人文层面”形成一种元理解。形成这种元理解的一个不可或缺的部分是认识到人们的个体性、他们不同的参与方式、处境、理解和反应,以及在提供姑息治疗的过程中很难退后一步以全面了解这些情况。我们希望这种元理解能为与人们不断变化的处境和多样需求相关的反思及意义建构对话提供信息。
本定性研究采用合作探究法,是与临床医生“一起”进行,而非针对他们。我们的团队(共7人)由来自同一地点的农村卫生服务机构和大学的姑息治疗临床医生及研究人员组成。我们通过在8个月内举行的一系列12次会议来探讨个人的看法和经历。此外,通过5个焦点小组,我们了解了13名经过有目的抽样的参与者的看法和经历,这些参与者担任照顾者和/或医疗服务提供者等一系列角色。数据通过对话和迭代的方式进行解读。
我们对提供姑息治疗的“人文层面”的元理解,以一种模型的形式直观呈现,由“人性特质”和“关怀行动”组成。“人性特质”包括 , ,以及 。“关怀行动”包括 , ,以及 。这种元理解是一个框架,能在多个复杂概念相互关联时将它们“纳入视野”。
我们的元理解突出了提供姑息治疗的“人文层面”,有能力涵盖资源配置、需求提出及参与姑息治疗过程中人们的复杂性、不确定性和相互关联性。为此提出了一些问题。“人性特质”和“关怀行动”的非线性图示表示便于以多种方式参与和重新审视姑息治疗情况,或应对其内部及不同情况之间的变化。