Table 1 The challenges and vulnerabilities of SCCY participating in research activities, the associated ethical considerations and approaches to mitigate risks
Guiding principle | Challenges & vulnerabilities | Ethical considerations | Approaches & Recommendations |
|---|---|---|---|
Justice | Socio-cultural context | - What is appropriate within the local context in relation to research processes? | - Community engagement and participation |
- What degree of autonomy do children have locally? | - Embedding research into existing programs and systems to build capacity. | ||
- What are the community’s views on issues of street children? | |||
Equity | - Participation in the research process, input into activities and research development | - Community engagement and participation | |
- Building trusting and communicative relationships with SCCY outside of the research | |||
- Inequity between adult researcher and vulnerable child | - Utilizing various recruitment approaches including flexible times to attend study site and access to services and care. | ||
- Equitable recruitment and chance to participate | |||
Respect for persons | Absence of a parent/guardian | - Who should provide informed consent for children/youth? | - Formal legal consent from governmental authorities |
- What type of consent is culturally and socially acceptable? | - Waiver of parental consent when appropriate | ||
- Do SCCY have the cognitive capacity to self-consent or provide assent? | - Informal community consent and approval | ||
- Approval from SCCY leaders | |||
Uncertain Cognitive Capacity | - How can cognitive capacity be assessed? | - Comprehension test to assess understanding of research and consent | |
- Is the population literate? Can they read and write to provide consent/assent? | - Specially trained social worker | ||
- Is substance use a factor in cognitive capacity? | |||
- SCCY are known for substance use, need to assess intoxication prior to participation. | |||
Beneficence | Coercion | - What type of compensation for participation is appropriate? | - Providing access to care and services regardless of participation |
- Lack of access to healthcare and basic necessities | - Adequate compensation for time away from the streets and/or transportation money | ||
- Power dynamics between research team and children | - Street outreach activities | ||
Child Protection | - How to protect children when social services and healthcare system infrastructure is weak? | - Establish protocol and procedure that work within the local social services and healthcare system | |
- What types of care are available in the local setting? | - Have a dedicated social worker and psychologist on research team | ||
- Responsibilities to report abuse to authorities | - When feasible collaborate or form partnerships with local healthcare provider | ||
- Human rights violations and authorities as perpetrators | - Assess the local child protection system and report to authorities when in the best interest of the child |