Journal of Palliative Medicine

Impact of Research Participation on Parents of Seriously Ill Children

To cite this article:
SteeleRose, CadellSusan, SidenHarold, AndrewsGail, Smit QuosaiTrudy, and FeichtingerLeanne. Journal of Palliative Medicine. 

Online Ahead of Print: May 28, 2014

Author information

Rose Steele, RN, PhD,¹ Susan Cadell, RSW, PhD,² Harold Siden, MD, MHSc, FRCP,^3,4 Gail Andrews, MEd,⁴ Trudy Smit Quosai, PhD,⁵ and Leanne Feichtinger, BSc⁴

¹School of Nursing, Faculty of Health, York University, Toronto, Ontario, Canada.

²School of Social Work, Renison University College–University of Waterloo, Waterloo, Ontario, Canada.

³Department of Paediatrics, University of British Columbia, Canuck Place Children's Hospice, Vancouver, British Columbia, Canada.

⁴Developmental Neuroscience and Child Health, Child & Family Research Institute, Vancouver, British Columbia, Canada.

⁵Renison University College-University of Waterloo, Waterloo, Ontario, Canada.

Address correspondence to:

Rose Steele, RN, PhD

School of Nursing

Faculty of Health

York University

Room 342 HNES Building

4700 Keele Street

Toronto, Ontario M3J 1P3

Canada
E-mail: rsteele@yorku.ca

Accepted January 28, 2014

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.

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 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.