title: Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy.
abstract: BACKGROUND
  Home is often cited as preferred place of death in the United Kingdom and elsewhere. This position, however, usually relies on data concerning adults and not evidence about children. The latter data are scant, primarily retrospective and from parents.
  
  
  OBJECTIVE
  To review the literature on preference for place of death for children and young people with life-limiting or life-threatening illnesses.
  
  
  METHODS
  The databases MEDLINE, CINAHL and EMBASE were searched from 2004 to 2012, as well as bibliography, key author and grey literature searches. Policy documents, empirical, theoretical and peer-reviewed studies and conference abstracts were included. Articles were assessed for study quality.
  
  
  RESULTS
  Nine studies were included from five countries. Six reported a majority of parents (only one study interviewed adolescents) expressing preference for death at home. Other studies differed significantly in their findings; one reporting 35.1% and another 0% preferring death at home. Some parents did not express a preference. Six of the studies included only parents of children who died from cancer while being treated at tertiary centres that offered palliative care services. Such results cannot be generalised to the population of all life-limiting and life-threatening illnesses. Furthermore, the methods of the studies reviewed failed to accommodate the full range and dynamic character of preference.
  
  
  CONCLUSIONS
  The evidence base for current policies that stress the need to increase home death rates for children and young people with life-limiting and life-threatening conditions is inadequate. Further rigorous research should collect data from parents, children and siblings.
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, UCL Institute of Child Health, London, UK. bluebond@ucl.ac.uk
authors.forename: Myra
authors.initials: M
authors.lastname: Bluebond-Langner
authors.forename: Emma
authors.initials: E
authors.lastname: Beecham
authors.forename: Bridget
authors.initials: B
authors.lastname: Candy
authors.forename: Richard
authors.initials: R
authors.lastname: Langner
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D002648:Child; D002675:Child, Preschool; D005260:Female; D006701:Home Nursing / Q000706:statistics & numerical data*; D017051:Hospice Care / Q000706:statistics & numerical data*; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D057240:Patient Preference / Q000523:psychology*; D010372:Pediatrics; D012189:Retrospective Studies; D013727:Terminal Care / Q000458:organization & administration / Q000523:psychology*; D055815:Young Adult
keywords: Paediatrics; location of death; palliative care; preference; systematic review; terminal care