The role of ‘familiarity’ and ‘normality’ in supporting transition to end of life care in paediatric oncology: A qualitative study

Daniel Kelly*, Mia Closs, Rachel McAndrew, Pam Smith

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

Aim
The aim of this study was to explore factors that helped when a child with cancer transitioned to end of life care in a hospital setting.

Design
Qualitative exploratory design using reflexive thematic analysis.

Methods
In-depth, semi-structured interviews were carried out with 7 sets of bereaved parents and 10 health professionals from one specialist paediatric oncology centre. Results were shared with professionals to help shape services in a new children's hospital.

Results
Three themes were identified: ‘change and facing the unknown’, ‘the comfort of feeling normal’ and ‘knowing and being known’. Bereaved parents described a gradual awareness of the deterioration of their child's condition and the need for trust in health professionals. Professionals described the process as challenging but were guided by the needs of children and parents. Supportive and trusting relationships with professionals helped parents to cope with the transition.

Conclusion
We identified practices that helped create a culture that supported parents and professionals involved in caring for children facing death from cancer. These were rooted in feeling supported and working to provide the best end of life care for children.
Original languageEnglish
Number of pages14
JournalJournal of Advanced Nursing
Volume00
DOIs
Publication statusPublished - 12 Jul 2024

Keywords / Materials (for Non-textual outputs)

  • childhood cancer
  • emotions
  • end of life
  • family
  • supportive care
  • transition

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