Development and Testing of an Instrument to Measure the Quality of Children’s End-of-life Care from the Parents’ Perspective

Background: The Senate of Canada asserts that quality end-of-life care is the right of every Canadian. Yet, little is known about the quality of end-of-life care for dying children and their families. Purpose: The study purpose was to develop and test an instrument to measure parents’ perspectives on the quality of care provided to families before, at the time of, and following the death of a child. Methods: In study Phase I, key components of quality pediatric end-of-life care were synthesized through a systematic review of research literature then validated and extended through focus groups with bereaved parents. In Phase II, instrument items were developed to assess structures, processes, and outcomes important to quality end-of-life care, then tested for content and face validity by health professionals and bereaved parents. In Phase III, the instrument was administered to bereaved mothers from across Canada and psychometric testing conducted. Results: Instrument items were developed based on review of 67 manuscripts and 3 focus groups with 10 parents. The Content Validity Index for the instrument was 0.84 as assessed by 7 health professionals. The instrument was assessed by 6 bereaved parents for face and content validity as well as their cognitive understanding of the items. In the final phase, 128 mothers completed the instrument and 31 of those completed it twice. Initial evidence for test-retest reliability, internal consistency, and construct validity was demonstrated for 7 subscales: Connect with Families, Involve Parents, Share Information with Parents, Share Information among Health Professionals, Support Parents, Provide Care at Death, and Provide Bereavement Follow-up. Additional items with demonstrated content validity only were grouped into three domains: Support the Child, Support Siblings, and Structures of Care. Implications: This study is a significant step forward in comprehensive measurement of the quality of children’s end-of-life care. The instrument provides a mechanism for feedback to health professionals, health systems, and policy makers to improve care provided to families facing the death of a child.Ph