Objective To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members.
Design Focus groups with children’s palliative care professionals. Data were analysed using thematic analysis.
Setting Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018.
Participants Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children’s palliative care services.
Findings A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural ‘collusion of immortality’, where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in ‘illuminating the blind spot’ of palliative care as well as providing hands-on care.
Conclusions Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.
- health services research
- palliative care
- qualitative research
Data availability statement
Data are available upon reasonable request to the corresponding author.
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Contributors SM, JD, A-MS and JC designed the study. SM conducted the interviews and data analysis, with regular supervision from JD, A-MS and JC. SM drafted the article. JD, A-MS, SB and JC revised the article critically for clarity and intellectual content.
Funding This study was funded by a National Institute for Health Research Doctoral Research Fellowship (DRF-2014-07-065). SM is funded by a Yorkshire Cancer Research Connects Senior Research Fellowship.
Disclaimer This article presents independent research funded in part by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.