Advanced cancer in children: how parents decide on final place of care for their dying child.
OBJECTIVE
to explore retrospectively the decisions made by parents regarding their choice of place of care at time of death for their child with advanced cancer.


METHODS
cross-sectional descriptive study.


METHODS
interpretive phenomenological analysis.


METHODS
parents of five children who had died of advanced cancer, whose care was overseen by the participating paediatric oncology centre in the southeast of England. Three children died at home and two in hospital.


RESULTS
seven themes were identified, four of which will be discussed: valuing time left; needing to feel safe and secure; we didn't know what to expect; and the difference between specialist and non-specialist staff. Families' decisions were instinctive or intuitive rather than a calculated weighing up of options. Families identified aspects of care that were both valuable and could be improved.


CONCLUSIONS
parents value the time that their children have to live when they know that their child's disease is incurable. Decisions around place of care are just that, decisions around place of care not place of death. Families valued the same types of support from staff regardless of the setting in which care was provided and found the same deficiencies difficult.
Hannan
Julia
J
Symptom Care Team, Level 6, Southwood Building, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH. HannaJ@gosh.nhs.uk
Gibson
Faith
F
D000293:Adolescent; D001293:Attitude to Death; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003657:Decision Making; D004739:England; D005260:Female; D006301:Health Services Needs and Demand; D006699:Home Care Services / Q000706:statistics & numerical data*; D006761:Hospitals / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology / Q000628:therapy; D015404:Nursing Methodology Research; D010290:Parents / Q000523:psychology*; D018579:Patient Selection; D000297:Psychology, Adolescent; D002666:Psychology, Child; D012189:Retrospective Studies; D012449:Safety; D012944:Social Support; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000458:organization & administration / Q000523:psychology