Article Text
Abstract
Background This abstract presents supplementary data relating to thenumber one priority that arose from the 1403 completed responses from the Palliative and end of life care Priority Setting Partnership (PeolcPSP) survey: Out of Hours and Emergency Support.
Most respondents, including patients, families and healthcare professionals, gave detailed narrative accounts in response to the survey questions and some of these data were deemed outside the scope of the James Lind Alliance (JLA) protocol as no intervention could be identified. Using a thematic analysis applied to the entire data set, we were able to explore the uncertainties, questions and experiences of a wide variety of respondents.
Method The 1403 survey responses were coded using the NVivo 10 qualitative analysis software and analysed thematically.
Results Responses were categorised in the following sub-themes: (Lack of) Support out of hours; Quality of support; Community services including hospice at home and telephone support networks Emergency care at the end of life; Coordination of OOH emergency services and Dealing with crisis admissions.
Respondents expressed concern over the apparent inadequacy of the current provision of out of hours and emergency support. This led to a number of issues including increased burden for informal carers and inappropriate hospital admissions which lead to greater strain on emergency health care providers (primarily A&E). The responses also highlighted the frustrations of some healthcare professionals over the perceived lack of support and care options during out of hours.
Conclusions Respondents described a significant gap in healthcare services ability to provide palliative and end of life care out of hours and in emergencies. It is hoped that the publication of these responses can promote further research in this area and have positive practical implications for the future of palliative and end of life care in the UK and Ireland.