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Assessment of children's capacity to consent for research: a descriptive qualitative study of researchers' practices
  1. Barbara E Gibson1,
  2. Elaine Stasiulis2,
  3. Shawna Gutfreund3,
  4. Maria McDonald4,
  5. Lauren Dade4
  1. 1Department of Physical Therapy, University of Toronto and Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
  2. 2The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada
  3. 3Ontario Agency for Health Protection and Promotion, Toronto, Ontario, Canada
  4. 4Holland Bloorview Kids Rehabilitation Hospital, Ontario, Canada
  1. Correspondence to Barbara Gibson, Department of Physical Therapy, University of Toronto, 160-500 University Avenue, Toronto, ON Canada M5G 1V7; barbara.gibson{at}utoronto.ca

Abstract

Background In Canadian jurisdictions without specific legislation pertaining to research consent, the onus is placed on researchers to determine whether a child is capable of independently consenting to participate in a research study. Little, however, is known about how child health researchers are approaching consent and capacity assessment in practice. The aim of this study was to explore and describe researchers' current practices.

Methods The study used a qualitative descriptive design consisting of 14 face-to-face interviews with child health researchers and research assistants in Southern Ontario. Transcribed interviews were analysed for common themes.

Results Procedures for assessing capacity varied considerably from the use of age cutoffs to in-depth engagement with each child. Three key issues emerged from the accounts: (1) requirements that consent be provided by a single person thwarted researchers' abilities to support family decision-making; (2) little practical distinction was made between assessing if a child was capable, versus determining if study information had been adequately explained by the researcher; and (3) participants' perceived that review boards' requirements may conflict with what they considered ethical consent practices.

Conclusion The results suggest that researchers' consent and capacity knowledge and skills vary considerably. Perceived discrepancies between ethical practice and ethics boards' requirements suggest the need for dialogue, education and possibly ethics board reforms. Furthermore we propose, where appropriate, a ‘family decision-making’ model that allows parents and their children to consent together, thereby shifting the focus from separate assent and consent procedures to approaches that appropriately engage the child and family.

  • Research ethics
  • capacity
  • informed consent
  • children
  • informed consent
  • minors/parental consent
  • policy guidelines/inst. review boards/review cttes

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Footnotes

  • Funding Holland Bloorview Kids Rehabilitation Hospital Foundation150 Kilgour RoadToronto, Ontario, Canada M4G 1R8.

  • Competing interests None declared.

  • Ethics approval This study was conducted with the approval of the University of Toronto.

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

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