NorthBEAT’s Capacity-to-Consent Protocol for Obtaining Informed Consent from Youth Evaluation Participants: An Alternative to Parental Consent

Abstract

Ethical practice compels evaluators to obtain informed consent from evaluation participants. When those participants are minors, parental consent is routinely sought. However, seeking parental consent may not be appropriate in all evaluation contexts. This practice note presents one context (mental health services research in rural Canada Mots clés : capacité, consentement éclairé, jeunesEthical practice compels evaluators to obtain informed consent from evaluation participants. When those participants are minors, parental consent is routinely sought. However, some practitioners have highlighted the need to think critically about that practice, arguing that parental consent is not appropriate in all contexts. This practice note describes one such context and offers an alternative for evaluators to consider when involving youth in evaluation. The project context is described and the informed consent literature is briefly reviewed, emphasizing critiques of the parental consent requirement. The "capacity-to-consent" protocol that was used to obtain consent from youth participants (without parental consent) is then described, followed by a discussion of the protocol and its implications for evaluation practice. CONTExT The NorthBEAT ProjectNorthBEAT (Barriers to Early Assessment and Treatment) is a study that assessed the mental health service needs of youth 1 in Northern Ontario who experience psychosis. A mixed-methods approach was adopted, which included two types of interviews with youth who had experienced psychosis: (1) semi-structured (qualitative) interviews explored participants' help-seeking and mental health service experiences, as well as their perceptions of how services could be improved; (2) structured interviews collected quantitative data to assess participants' symptoms and functional status.Participants were recruited from across Northern Ontario, through agencies where they received services for a severe mental illness; participants were between 13 and 21 years of age. Given the age of the participants, we initially planned to seek parental consent for their participation. Upon reflection, however, the project context caused us to question the appropriateness of seeking parental consent. Concerns about seeking parental consent for youth participation in NorthBEAT Ethical concernsParticipants were recruited from mental health service agencies where they were accessing service for psychosis. Many youth in this region-especially Indigenous youth-do not live in the same location as their parents because they attend school outside of their communities. Some youth seek treatment while living away from their communities. Or, in some cases, their parents do not know the extent of their mental health issues. Requiring parental consent threatened to minimize youth's right to privacy with respect to their health information. Practical concernsParticipants were recruited from 10 programs across Northern Ontario. This is a region with a vast geography and scarce population; many residents live in ru...

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“…Informed written parental consent was obtained for all participants before participation. Youth between the ages of 13 and 17 years who were deemed to have the capacity to consent according to the procedure published by Nadin et al 45 were asked to provide their consent to participate, whereas those aged 8 to 12 years provided assent. The study conformed to the standards set by the Declaration of Helsinki.…”

NorthBEAT: exploring the service needs of youth experiencing early psychosis in Northern Ontario

“…Clinicians at the project sites informed their eligible clients of the study, and connected them to the researchers for enrollment in the study. Consent was obtained with youth using an innovative process (29), and potential participants were given the opportunity to decline to participate. Eligible youth were either (i) 18 years of age or younger; or (ii) had accessed the services as an 18-yearold or younger in the past two years (i.e., the maximum participant age was 20).…”

“…Written informed consent for participation was not required from the participants or the participants' legal guardians/next of kin because youth participants consented for themselves, there were other safeguards to prevent undue influence without parental consent as well. This method was published and awarded for innovation: (29).…”

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“…The REB's insistence on parental consent failed to take into account the precarious experiences and positions of 2SLGBTQ+ youth in relation to parents who are not affirming, or not aware of their 2SLGBTQ+ identity, at the same time that it refused 2SLGBTQ+ members' ability to speak up, to make decisions, and to recognize their own limits. To circumvent this systemic barrier, the researchers developed a capacity to consent protocol (Nadin et al, 2018) that built upon OUTSaskatoon's internal practice. The capacity to consent protocol took the form of a phone interview with the youth where the researcher and the youth went through the consent form section by section.…”