Introduction Out of hours care was the top concern of the 1403 respondents to the PeolcPSP. The respondents of the PeolcPSP were asked to answer big questions. In return, they gave big answers often with highly personal narrative accounts in illustration of their concerns.
Aim(s) and method(s) We undertook a supplementary thematic analysis as a valuable opportunity to explore the uncertainties, questions and experiences of respondents to supplement the interventional questions taken forward by the PeolcPSP.
Results Survey respondents talked about the need for 24 hour and out of hours care. Most of these responses consider access to good quality home care support and services to be a key priority. In particular, respondents struggled to understand why services were restricted outside normal working hours and expressed anger and frustration. Emergency admissions for crisis care, as the only option, were discussed frequently. The results are categorised by themes and sub themes:
(Lack of) support out of hours
Quality of support
Hospice at home
Telephone support network
Emergency care and rapid response
Emergency care at the end of life
Coordination of out of hours emergency services
Dealing with crisis admissions
Conclusion(s) The results of the supplementary analysis expand the findings of the PeolcPSP and further reinforce the call for further investment in out of hours services, and palliative care research, including societal aspects of living with a terminal illness and end of life.
The dual approach of the PeolcPSP protocol and a thematic approach can appropriately explore the entire dataset in recognition of the time and personal effort given by the survey respondents.
Best S, Tate T, Noble B, et al. The Palliative and End of Life Care Priority Setting Partnership (PEOLCPSP): Determining evidence uncertainties from the perspective of the end user of research. BMJ Support Palliat Care 2014;4:A42. doi:10.1136/bmjspcare-2014-000654.117
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