Table 2 Relevant Child/Youth Consent Study Findings
Author | Challenges and barriers to informed consent | Considerations for obtaining consent | Key Findings/Wise Practices |
|---|---|---|---|
Stiffman et al. | - Some providers required parental permission to offer services, even if youth were in danger. - The consent form was not deemed suitable despite community consultation. | - Families could consent via signing and mailing a pre-stamped postcard or in-person pre-interview. | - Interviewers used home visits to explain the study, obtain parent/guardian and youth consent, and conduct the interview. |
Panagiotopoulos et al. | - Child welfare is the Elder’s responsibility, and obtaining informed assent directly from children was foreign. - The authors noted many sociological, ethical, and practical challenges. | - Community members required sufficient information (letters, preliminary clinic visits) before participating. - Confidence/trust were key facilitators. - Pre-intervention trips ensured “appropriate dialogue, care, respect and planning"3. | - Timing must be flexible and on the community’s terms. - Multi-lateral support is required (Elders, hereditary and elected Chiefs, band council, school, and health leaders). - Senior investigators met with community Elders and hosted a joint community feast. |
Baydala et al. | - Differences in prioritizing individual vs. collective rights. - “Individualistic” research values disrupted traditional roles. - Children’s assent was considered unnecessary after obtaining community and parental consent. - Children were placed “in conflict with some of their kinship responsibilities”1 when asked to challenge parents’ decisions. - “Trust remains an issue when using written forms of agreement with Western institutions.”1 | - Community researchers advised that home visits were ideal to obtain parental consent. - Visits were carried out by researchers who, in most cases, were also family members. - Children’s right to refuse was essential. | - Child assent should be conducted in culturally appropriate settings and reflect community values. |
Rose et al. | - The consent rate was lower for students with lower socioeconomic backgrounds. | - The burden of obtaining parental consent should not be placed on students. - Tech (website, texting) and incentives (voucher, badge, prize draw) can be used to encourage the return of consent forms. - Home visits can be used for families who have not returned their consent forms. | - Information was provided through face-to-face meetings and in local languages. |
Fletcher et al. | - Western REB processes presented logistical and process challenges. Insufficient money and time were allocated to consent processes. - Wording, document length and use of medical/ research terms in consent forms were all challenges. The term “risk” brought up past research injustices. - Written consent caused discomfort, and relationship-based oral consent was preferred. - “The current process is not meeting the stated objectives of safety and informed consent as typically envisioned by REBs.“5 | - Local researchers recommended respectful and informational home visits by a community-based team member. - Information sheets should be left with parents. - Involving community members in the research process fostered partnership and trust. - Consenting hinged on multiple home visits lasting 1–2 h each. - Issues of guardianship and family structure had to be considered sensitively. | - After observing that written consent made parents and community researchers uncomfortable, oral consent was recommended. Ideally, this would be land-based. - Consenting should “reinforce culturally based ethical norms and consent practices rather than negotiated as an add-on to academic institutional practices.”5 - Early involvement of Elders and community leaders fostered spiritual, political, and psychological protection. - Relational consent processes reaffirmed kinship with community researchers, including offering tobacco to leaders and Elders. |
Jardine & James | - Written consent contradicts Aboriginal approaches to research in many Northern communities. - Determining who should consent on behalf of minors is challenging in communities where guardianship may not be formally recognized. | - Although parental/guardian permission was obtained, researchers obtained oral assent from students. | - Youth/student researchers were trained to obtain consent and interview other students. |
Yao et al. | - Community members raised privacy and confidentiality concerns. | - A waiver allowed teens aged 15–18 to participate without parental consent. - Teens who had already subscribed to the study’s texting service were invited/consented via text. | - Text messaging was used to reach teens effectively. |
Chadwick et al. | NR | - Using a video allowed consent to be standardized across multiple research sites. | - Community leaders identified culturally appropriate ways to facilitate the trial’s implementation. - The tribal REB was designated the board of record. |
Wagner et al. | - Since recruitment was school-based, vulnerable children could be denied participation opportunities due to school absences. - Low school attendance was due to funerals, medical appointments, and cultural events. | - Community researchers verbally translated study materials into appropriate languages, as required. | - Research assistants and community researchers conducted joint home visits to seek parental consent. |
Anderson et al. | - Ensuring robust processes for informed consent, withdrawal and debriefing in an online environment | - Consent via email or audio-recorded verbal consent at Online Yarning Circle | NR |
Siller et al. | NR | - Researchers incentivized returning consent forms regardless of consent or participation. | - Multiple ways to return consent forms (email, text or in-person) |