RESUMO
BACKGROUND: An empirical social research approach, facilitating in-depth exploration of complex, contemporary contextualised phenomena, case study research has been used internationally in healthcare studies across clinical settings, to explore systems and processes of care delivery. In the United Kingdom, case study methods have been championed by nurse researchers, particularly in the context of community nursing and palliative care provision, where its applicability is well established. Yet, dogged by conceptual confusion, case study remains largely underutilised as a research approach. METHOD: Drawing on examples from nursing and palliative care studies, this paper clarifies case study research, identifies key concepts and considers lessons learned about its potential for nursing research within the unique and complex palliative and end of life context. CONCLUSION: A case study approach offers nurse researchers the opportunity for in-depth, contextualised understanding of the systems and processes which influence their role in palliative care delivery across settings. However, philosophical and conceptual understandings are needed and further training in case study methodology is required to enable researchers to articulate and conduct case study.
RESUMO
BACKGROUND: Patient held records need to be evaluated in palliative care settings. OBJECTIVES: To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers. METHODS: A mixed methods prospective longitudinal cohort study in the UK-adult patients under community specialist palliative care nurse review or attending day hospice were given questionnaires at record introduction and after 4-6 weeks. Hospice staff completed a questionnaire and focus group after 8 months. RESULTS: From Sept 2016 to June 2017, 550 patients were screened, 347 (63.1%) were offered records and 259 accepted (74.6%). 238 accepted a research pack, 105 returned questionnaire 1 (44.1% response rate) and 26 returned questionnaire 2 (24.8% of initial respondents). Questionnaire 1 (patients): 40% found it burdensome repeating information, and almost 70% were interested in a record to reduce this. Questionnaire 2 (patients): 74% found the record easy to use, but few (4, 15.4%) used it regularly. Over 60% stated the record was useful and would recommend it to others, despite not using it themselves. Professionals indicated that it was mainly patients and relatives who used the record, not non-palliative professionals. CONCLUSIONS: While initial uptake of the record was high, use appeared low. While people saw real value in the record for others, they did not generally use it themselves. This evaluation demonstrates that patient held records are unlikely to be used by palliative care patients even though they see value in the concept.
RESUMO
BACKGROUND: Globally recommended in healthcare policy, Shared Decision-Making is also central to international policy promoting community palliative care. Yet realities of implementation by multi-disciplinary healthcare professionals who provide end-of-life care in the home are unclear. AIM: To explore multi-disciplinary healthcare professionals' perceptions and experiences of Shared Decision-Making at end of life in the home. DESIGN: Qualitative design using focus groups, transcribed verbatim and analysed thematically. SETTING/PARTICIPANTS: A total of 43 participants, from multi-disciplinary community-based services in one region of the United Kingdom, were recruited. RESULTS: While the rhetoric of Shared Decision-Making was recognised, its implementation was impacted by several interconnecting factors, including (1) conceptual confusion regarding Shared Decision-Making, (2) uncertainty in the process and (3) organisational factors which impeded Shared Decision-Making. CONCLUSION: Multiple interacting factors influence implementation of Shared Decision-Making by professionals working in complex community settings at the end of life. Moving from rhetoric to reality requires future work exploring the realities of Shared Decision-Making practice at individual, process and systems levels.
