Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit

Constance Williams, Janice Cairnie, Valerie Fines, Colleen Patey, Karla Schwarzer, Jennifer Aylward, Lynne Lohfeld, Haresh Kirpalani, With Care team

Research output: Contribution to journalArticlepeer-review

32 Citations (Scopus)


OBJECTIVES: The objective of this study was to develop and pretest a questionnaire to assess the practice of withdrawal of life-sustaining treatment in the NICU on the basis of the experiences of bereaved parents.

METHODS: We conducted semistructured interviews with 11 parents whose infants had undergone withdrawal of life-sustaining treatment in the NICU at McMaster University Medical Centre to obtain their views on helpful practices. Interviews continued until no new items were obtained (ie, saturation point). A total of 370 items were distilled into 82 questionnaire statements on care by a multidisciplinary team and grouped for analysis into 6 domains: communication, quality of care, quality of life, shared decision-making, withdrawal of life-sustaining treatment process, and bereavement care. Respondents were asked to rank how frequently events occurred on a 7-point Likert scale anchored from 1 = never to 7 = always. A score of >5 was considered favorable. The questionnaire was distributed to a pretest sample of perinatal social workers who attended a bereavement workshop at an international conference.

RESULTS: The response rate was 48%. Respondents ranked items that pertained to the withdrawal of life-sustaining treatment process highest, indicating that items were done well. Items related to quality of care and bereavement care ranked lowest. Other domains ranked as follows: communication, shared decision-making, and quality of life. Consistency of items within domains was tested by Cronbach's alpha and split-half testing and were >0.6 for most domains.

CONCLUSIONS: Parents' views on important aspects of end-of-life care in the NICU were incorporated into a quality assurance questionnaire. Pretesting assessed the performance of the instrument and the perceptions of social workers on the effectiveness of end-of-life practices. Respondents identified that parents' practical needs were met during the withdrawal process but were not consistently met in regard to the quality of in-hospital and follow-up bereavement care.

Original languageEnglish
Pages (from-to)e87-95
Issue number1
Publication statusPublished - Jan 2009


  • Bereavement
  • Follow-Up Studies
  • Hospice Care
  • Humans
  • Infant, Newborn
  • Intensive Care Units, Neonatal
  • Life Support Care
  • Palliative Care
  • Parent-Child Relations
  • Surveys and Questionnaires
  • Weights and Measures
  • Withholding Treatment
  • Comparative Study
  • Journal Article
  • Research Support, Non-U.S. Gov't


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