Published online December 29, 2008
PEDIATRICS Vol. 123 No. 1 January 2009, pp. e87-e95 (doi:10.1542/peds.2007-2950)

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ARTICLE

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, MD^a, Janice Cairnie, RN^a, Valerie Fines, RSW^a, Colleen Patey, RSW^a, Karla Schwarzer, RSW^a, Jennifer Aylward, MSc^a, Lynne Lohfeld, PhD^b, Haresh Kirpalani, BM, MSc^a,b for the With Care team

Departments of ^a Pediatrics
^b Clinical Epidemiology, McMaster University, Hamilton, Ontario, Canada

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 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.

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Key Words: measuring quality of care • ethics • bereavement • palliative care • neonatal death • parental attitudes

Abbreviations: WLST—withdrawal of life-sustaining treatment

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Accepted Sep 25, 2008.

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