title: Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care.
abstract: BACKGROUND
  The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care.
  
  
  METHODS
  The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted.
  
  
  RESULTS
  Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument.
  
  
  CONCLUSIONS
  There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children's end-of-life care.
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 130-155 College Street, Toronto, ON M5T 1P8 Canada.
authors.forename: Kimberley
authors.initials: K
authors.lastname: Widger
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 130-155 College Street, Toronto, ON M5T 1P8 Canada.
authors.forename: Ann E
authors.initials: AE
authors.lastname: Tourangeau
authors.affiliation: York University, 4700 Keele Street, Toronto, ON M3J 1P3 Canada.
authors.forename: Rose
authors.initials: R
authors.lastname: Steele
authors.affiliation: Department of Psychiatry & Behavioural Neurosciences, McMaster University, 100 West 5th, Hamilton, ON L8N 3K7 Canada ; Department of Psychiatry, University of Toronto, 250 College Street, Toronto, ON M5T 1R8 Canada.
authors.forename: David L
authors.initials: DL
authors.lastname: Streiner
keywords: End-of-life; Instrument development; Mothers; Pediatrics; Quality care