Listen to Me! Involving Children and Families Living With Congenital Heart Disease In The Research Process

Authors

  • Jillian Roberts University of Victoria, Victoria, British Columbia, Canada
  • Tamara Mortimer University of Victoria, Victoria, British Columbia, Canada
  • Kendra Massie University of Victoria, Victoria, British Columbia, Canada
  • Lani Maxwell University of Victoria, Victoria, British Columbia, Canada
  • Brian Sinclair Department of Pediatrics, Victoria General Hospital, Victoria, British Columbia, Canada
  • Shelley Ross University of Victoria, Victoria, British Columbia, Canada
  • Lia Van Winkel University of Victoria, Victoria, British Columbia, Canada
  • Tara Elliott University of Victoria, Victoria, British Columbia, Canada

Keywords:

participatory action research, congenital heart disease, quality of life

Abstract

Children and families affected by congenital heart disease have rarely had the opportunity to share their school experiences and recommendations, and be actively involved with research and the dissemi­nation of research results. In June of 2003, however, families who had participated in a study on the quality of life and school experiences of indi­viduals affected by congenital heart disease attended a research retreat and became active research participants. Outcomes of this participatory research project were positive as family members had the opportunity to network with similar others, share insights, and formulate recommenda­tions to be used in a school handbook, and researchers were able to share research findings and gather additional information and recommendations. Consequently, a research retreat, when preceded by semi-formal interviews, appears to be an effective method for involving participants in the research process and contributing valuable knowledge to the development of educa­tional theory and practice.

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Published

2004-03-01

How to Cite

Roberts, J. ., Mortimer, T., Massie, K. ., Maxwell, L. ., Sinclair, B. ., Ross, S. ., Winkel, L. V., & Elliott, T. . (2004). Listen to Me! Involving Children and Families Living With Congenital Heart Disease In The Research Process. Journal of Child and Youth Care Work, 19, 186–191. Retrieved from https://acycpjournal.pitt.edu/ojs/jcycw/article/view/384

Issue

Vol. 19 (2004)

Section

Articles

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