Background Current policies emphasise the importance of informal/family carers in supporting people at the end of their lives. Guidance suggests that carers' needs should be assessed, acknowledged and addressed. If carers' needs are not met this can precipitate changes in their health status and unplanned care setting transitions. There are few studies that investigate how carer assessment and support is enacted in practice.
Aim To investigate the role of the district nurse in palliative care provision, with a particular focus on observational exploration of their role and practice in providing care to patients and their carers.
Methods A longitudinal qualitative ethnographic design, comprising observation of district nurse/palliative care patient/carer encounters over time, and post observation interviews with patients, carers and district nurses (DNs). Patients were sampled from 12 DN team caseloads across three primary care organisations. Observations and interviews were audio-recorded and transcribed. Iterative data analysis comprised familiarisation, coding and categorisation using techniques of constant comparison to generate typologies of concepts. The study received all necessary ethics and governance approvals.
Results 17 DN/patient/carer encounters were observed (n=11 patients, 8 nurses) with 23 postobservation interviews (11 DN, 12 patient/carer). DNs talked about developing a relationship with carers to facilitate future care. Carers discussed the DN role as being with patients rather than themselves. This is borne out in practice, as the focus of all observed encounters where the carer was present (n=11) was the patient. Overt carer assessment or support by DNs was negligible. Carers were participants in the DN/patient encounter, primarily facilitating the provision of information about patient care and problems.
Conclusions Carer needs appeared tangential to DNs practice, although DNs appreciated their role and acknowledged their needs outside the observed encounters. DNs need to understand how to better incorporate carer assessment and support into their everyday practice.
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