Location of end-of-life care of children with cancer: a systematic review of parent experiences

Background: While cancer in children is a rare disease it remains a leading cause of non-accidental deaths of children aged 5 – 14 years. Understanding the factors that impact quality-of-care and how decisions are made for where end-of-life care (EOLC) is provided is pivotal for service improvement.

 Aim: To synthesise existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision making when choosing the location of EOLC and death for their child.

Method: Customised searches were conducted in CINAHL, Medline, Embase and PsycINFO databases in December 2020 and updated December 2021. Articles were screened independently by two reviewers. Raw data were extracted from included studies and synthesised using thematic analysis.

Results: This review included 15 studies across 11 countries involving 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home, 39% in hospital, and 2% in a free-standing hospice. Themes related to choosing home for EOLC, included honouring the child’s wishes, familiarity of home, and parents’ desire to be the primary carer. Themes surrounding preference for EOLC in hospital included trust in hospital staff, practical logistics of providing care and safety of the hospital environment.

Factors impacting parents' decision-making included the quality of communication and the quality of care available. Irrespective of chosen location, parents highlighted the importance of compassionate care that focuses on the individual personality of the child and goes beyond treating symptoms of the disease.

The review findings emphasise the importance of honest communication between families and healthcare providers to optimise conversations with children and families, to ensure goals of care are achieved and opportunities to discuss preferred location of care occur. This research was recently published in the Journal of Paediatric Blood and Cancer.