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Mixed methods study exploring parent engagement in child health research in British Columbia
  1. Jennifer Smith1,
  2. Ian Pike1,2,3,
  3. Mariana Brussoni1,3,4,
  4. Lori Tucker2,3,5,
  5. Louise Mâsse3,4,
  6. Janet W T Mah3,5,6,
  7. Ainsley Boudreau5,
  8. Dawn Mount3,
  9. Russell Bonaguro3,
  10. Stephanie Glegg7,
  11. S Amed2,3,5
  1. 1 BC Injury Research and Prevention Unit, Vancouver, British Columbia, Canada
  2. 2 Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
  3. 3 BC Children’s Hospital Research Institute, Vancouver, British Columbia, Canada
  4. 4 School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, Canada
  5. 5 BC Children’s Hospital, Vancouver, British Columbia, Canada
  6. 6 Psychiatry, University of British Columbia, Vancouver, British Columbia, Canada
  7. 7 Sunny Hill Health Centre for Children, Vancouver, British Columbia, Canada
  1. Correspondence to Dr S Amed; samed{at}cw.bc.ca

Abstract

Objectives The objective of this study was to explore parent perspectives of and interest in an interactive knowledge translation platform called Child-Sized KT that proposes to catalyse the collaboration of patients, families, practitioners and researchers in patient-oriented research at British Columbia Children’s Hospital (BCCH).

Methods An explanatory sequential mixed methods design was used over 1 year. Over 500 parents across BC completed an online survey, including a subsample of 102 parents who had accessed care at BCCH within the past 2 years. The survey explored parent perspectives about the value of their engagement at all stages of the research process and their interest in and concerns with using an online platform. Following the online survey, two focus groups were held with parents in the Vancouver area to explore themes emerging from the survey.

Results Parents expressed keen interest in engaging in research at BCCH. Parents perceived benefit from their input at all stages of the research process; however, they were most interested in helping to identify the problem, develop the research question and share the results. Although parents preferred online participation, they had concerns about protecting the privacy of their child’s information.

Conclusions Parents see value in their involvement in all stages of child health research at BCCH. Their input suggests that Child-Sized KT, a hypothetical online platform, would facilitate meaningful stakeholder engagement in child health research, but should offer a customised experience and ensure the highest standard of data privacy and protection.

  • paediatrics
  • patient-oriented research
  • knowledge translation

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors JS, IP, MB, LT, LM, JWTM, AB, DM, RB, SG and SA designed the survey and focus group guides, contributed to the analysis and interpretation of the data, and reviewed and revised the manuscript. SA conceptualised and designed the study, coordinated and supervised data collection, and critically reviewed the manuscript for important intellectual content. JS drafted the initial manuscript, and coordinated and supervised data collection. LT, IP, JWTM and MB conceptualised and designed the study. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding This study was supported by the Canadian Institutes of Health Research (CIHR) Patient-Oriented Research Collaboration Grants, grant #PEG-145205, and the BC Children’s Hospital Research Institute Evidence to Innovation Theme.

  • Competing interests None declared.

  • Ethics approval This study was reviewed and approved by the University of British Columbia Children’s and Women’s Hospital Research Ethics Board (cert# H16-01342).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

  • Patient consent for publication Not required.

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