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Family experiences with palliative care in freestanding paediatric hospices: a scoping review
  1. Jennifer Dorman1,
  2. Shelley Raffin Bouchal1,
  3. Kathryn daSilva Curiel2 and
  4. Megan Miller2
  1. 1 Nursing, University of Calgary, Calgary, Alberta, Canada
  2. 2 Rotary Flames House, Alberta Health Services, Calgary, Alberta, Canada
  1. Correspondence to Ms Jennifer Dorman, University of Calgary, Calgary, AB T2N 1N4, Canada; jennifer.dorman{at}


Background Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families’ experiences of this care within freestanding paediatric hospices.

Objectives To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement.

Criteria Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families’ experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English.

Exclusion criteria: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss.

Sources of evidence Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results.

Charting methods The scoping review was guided by recommendations from Arksey and O’Malley and Levac et al.

Results A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas.

Conclusions There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.

  • Bereavement
  • Hospice care
  • Paediatrics
  • Terminal care

Data availability statement

Data are available upon reasonable request. Data and the research protocol are available from the authors upon request.

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Data availability statement

Data are available upon reasonable request. Data and the research protocol are available from the authors upon request.

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  • Contributors JD, SRB, KdSC and MM were involved in designing the research. JD and SRB were involved in carrying out the review. JD was involved in writing the paper. JD, SRB, KdSC and MM were involved in editing the paper. JD is the author acting as guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.