title: Impact of research participation on parents of seriously ill children.
abstract: BACKGROUND
  There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.
  
  
  OBJECTIVE
  To obtain parents' perceptions about their experience of participating in one of two research studies.
  
  
  METHODS
  Descriptive, quantitative survey.
  
  
  METHODS
  Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home.
  
  
  METHODS
  Researcher-designed Impact of Participation questionnaire.
  
  
  RESULTS
  Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation.
  
  
  CONCLUSIONS
  Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
authors.affiliation: 1 School of Nursing, Faculty of Health, York University , Toronto, Ontario, Canada .
authors.forename: Rose
authors.initials: R
authors.lastname: Steele
authors.forename: Susan
authors.initials: S
authors.lastname: Cadell
authors.forename: Harold
authors.initials: H
authors.lastname: Siden
authors.forename: Gail
authors.initials: G
authors.lastname: Andrews
authors.forename: Trudy
authors.initials: T
authors.lastname: Smit Quosai
authors.forename: Leanne
authors.initials: L
authors.lastname: Feichtinger
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research; D002648:Child; D002662:Child Health Services; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D010290:Parents / Q000523:psychology*; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult