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. 2024 Jan 3;25:3. doi: 10.1186/s12910-023-00996-9

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)

NR = Not reported