The experience of providing end of life care at a children's hospice: a qualitative study

BMC Palliat Care. 2017 Feb 13;16(1):15. doi: 10.1186/s12904-017-0189-9.

Abstract

Background: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children's hospice.

Methods: Qualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children's hospice offering palliative and specialist care to life-limited children and young people.

Results: The hospice setting provides a model of excellence in supporting staff and mitigating challenging aspects of their role, which includes peer/organisational support, and regular ongoing training in key aspects of children's palliative care. Key recommendations for improving their experience included advanced communication training and knowledge sharing with other children's palliative care specialists within the acute setting.

Conclusions: Service and policy initiatives should encourage open, informal peer/organisational support among the wider children's palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children's hospices and hospital settings.

MeSH terms

  • Attitude of Health Personnel
  • Child
  • Communication
  • Delivery of Health Care / standards
  • Health Personnel / education
  • Health Personnel / organization & administration
  • Health Personnel / psychology
  • Hospice Care / organization & administration
  • Hospice Care / standards*
  • Humans
  • Inservice Training
  • Interprofessional Relations
  • Job Satisfaction
  • Northern Ireland
  • Professional-Family Relations
  • Professional-Patient Relations
  • Qualitative Research
  • Quality of Health Care
  • Resilience, Psychological
  • Social Support
  • Stress, Psychological / etiology
  • Terminal Care / organization & administration
  • Terminal Care / standards*