"When a patient chooses to die at home, that's what they want… comfort, home" : brilliance in community-based palliative care nursing

Article indépendant

DADICH, Ann | HODGINS, Michael | WOMSLEY, Kerrie | COLLIER, Aileen

Introduction: To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted. Methods: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted. Results: Brilliant community-based palliative care nursing largely involved maintaining normality in patients’ and carers’ lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative ‘normals’. Conclusion: Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality. Patient or Public Contribution: Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.

http://dx.doi.org/10.1111/hex.13780

Voir la revue «Health expectations, 26»

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