title: Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Constance
authors.initials: C
authors.lastname: Williams
authors.forename: Janice
authors.initials: J
authors.lastname: Cairnie
authors.forename: Valerie
authors.initials: V
authors.lastname: Fines
authors.forename: Colleen
authors.initials: C
authors.lastname: Patey
authors.forename: Karla
authors.initials: K
authors.lastname: Schwarzer
authors.forename: Jennifer
authors.initials: J
authors.lastname: Aylward
authors.forename: Lynne
authors.initials: L
authors.lastname: Lohfeld
authors.forename: Haresh
authors.initials: H
authors.lastname: Kirpalani
mesh_terms: D001601:Bereavement; D005500:Follow-Up Studies; D017051:Hospice Care / Q000379:methods / Q000592:standards; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000592:standards*; D008020:Life Support Care / Q000379:methods / Q000592:standards*; D010166:Palliative Care / Q000379:methods / Q000592:standards; D010287:Parent-Child Relations; D011795:Surveys and Questionnaires / Q000592:standards*; D014894:Weights and Measures / Q000592:standards*; D028761:Withholding Treatment / Q000592:standards*