Impact of research participation on parents of seriously ill children Steele, Rose; Cadell, Susan; Siden, Harold; Andrews, Gail; Smit Quosai, Trudy; Feichtinger, Leanne
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 IRBs 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 1 of 2 research studies. Design: Descriptive, quantitative survey. Setting/Subjects: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. Measurements: Researcher-designed Impact of Participation questionnaire. Results: Few differences between the 2 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. About half (50.5%) said that participation had at least some positive effect and only 3 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. Though clinicians and IRBs may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
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