Location of end-of-life care of children with cancer: a systematic
review of parent experiences
Abstract
Objective: 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 end-of-life care and death for
their child. Results: This review included 15 studies involving 460
parents of 333 children and adolescents who died from progressive
cancer. Where reported, the majority (58%) of children died at home or
in a hospital (39%), with only a small fraction dying in a hospice.
Factors impacting decision-making for location of care included the
quality of communication and the quality of care available. Themes
related to choosing home for end-of-life care and death included:
honouring the child’s wishes, familiarity of home, and parents’ desire
to be their child’s primary carer. Preference for location of death in
hospital included trust in hospital staff, practical logistics and the
safety of the hospital environment.