Enrolling HIV-positive adolescents in mental health research: A case study reflecting on legal and ethical complexities

Woollett, Nataly; Peter, J.C.; Cluver, Lucie; Brahmbhatt, Heena

doi:10.7196/samj.2017.v107i8.12409

Cited by 5 publications

(23 citation statements)

References 42 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Woollett and colleagues describe an interesting case study where they sought consent from a High Court in South Africa for research involving orphaned HIV-positive adolescents. In that study, they provide detailed recommendations for consent involving adolescents, including training staff about confidentiality requirements; recognising immature decision-making by adolescents and developing appropriate methods for probing comprehension and consent; and using methods that promote active participation in research, such as mobile phones 33…”

Section: Resultsmentioning

confidence: 99%

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review

Colom¹,

Rohloff

2018

bmjpo

View full text Add to dashboard Cite

IntroductionConducting research with children in low/middle-income countries (LMIC) requires consideration of socioeconomic inequalities and cultural and linguistic differences. Our objective was to survey the literature on informed consent in paediatric LMIC research, assessing for practical guidance for culturally and linguistically appropriate procedures.MethodsWe conducted a scoping review on informed consent in paediatric LMIC research searching the PubMed, Web of Science and PsycINFO databases. Eligible articles were published in English, from any date range, of any study design or format.ResultsThe search identified 2027 references, of which 50 were included in the analysis following full-text review. Reviewed guidelines emphasised individual, informed and voluntary consent from parents and caregivers. Reviewed articles provided detailed practical guidance on adapting these guiding principles to LMIC settings, including considerations for community engagement, verbal or other alternative consent procedures for low-literacy settings or less commonly spoken languages and guarding against therapeutic misconception by caregivers. There was uncertainty, however, on how to best protect individual autonomy, especially when influenced by gender dynamics, leadership hierarchies or the social status of researchers themselves. There was, furthermore, limited research discussing the special case of research involving adolescents or of procedures for documenting assent by participating children.ConclusionsA scoping review of paediatric research in LMICs revealed substantial guidance on several features of culturally appropriate informed consent. However, additional research and guidance is needed, especially in the areas of gender imbalances, research with adolescents and children’s own assent to participate in research.

show abstract

Section: Resultsmentioning

confidence: 99%

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review

Colom¹,

Rohloff

2018

bmjpo

View full text Add to dashboard Cite

show abstract

“…(Groves et al, 2018) Studies highlight the need for practical mechanisms to ensure participant understanding during the consent process, such as thorough questions about study risks and benefits in the informed consent process. (Rennie et al, 2017;Woollett et al, 2017) Caregiver Consent…”

Section: Participant Informed Consent and Assentmentioning

confidence: 99%

“…Most (N = 9) articles addressed caregiver consent in adolescent research (Bwakura-Dangarembizi et al, 2012;Day et al, 2020;Groves et al, 2018;Mackworth-Young et al, 2019;Simons-Rudolph et al, 2020;Singh et al, 2006;Vreeman et al, 2012;Vreeman et al, 2009;Woollett et al, 2017) and cited requirements for such consent for minors involved in research. (Bwakura-Dangarembizi et al, 2012;Day et al, 2020;Groves et al, 2018;Simons-Rudolph et al, 2020;Singh et al, 2006;Vreeman et al, 2012;Vreeman et al, 2009;Woollett et al, 2017) All seven countries in the PAT3CH consortium (Brazil, Kenya, Mozambique, Nigeria, South Africa, Uganda, Zambia) required parent or legal guardian consent for adolescents under the age of majority, but waived the requirement for emancipated and mature minors, the definitions of which vary by country. (Day et al, 2020) Adolescent participants had varying perspectives on caregiver consent-some did not want to participate in research where caregiver consent was required due to fear of disclosure of their HIV status; (Singh et al, 2006) The Child Care Act of 1983, (Act) which designated 14 years as the age of consent, has now been repealed.…”

Section: Participant Informed Consent and Assentmentioning

confidence: 99%

Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A Systematic Review

Gillette,

Nyandiko,

Chory

et al. 2023

Journal of Empirical Research on Human Research Ethics

View full text Add to dashboard Cite

Research engaging children and adolescents living with HIV (CALWH) is critical for youth-friendly services and HIV care, and researchers need to ensure that such engagement is ethical. We conducted a systematic review to identify key ethical considerations for the engagement of CALWH in research. The review focused on primary research articles conducted in African countries that examined ethical issues in CALWH engaged in research. Ten studies met the inclusion criteria; the following seven key domains were extracted: 1) justifications for engaging CALWH in research; 2) community involvement; 3) informed consent/assent; 4) caregiver involvement; 5) perceptions of benefits; 6) perception of the risks of involvement; and 7) confidentiality. These domains can inform the ethical engagement of CALWH in research.

show abstract

“…For example, a study of mental health among orphaned adolescents living with HIV in South Africa sought and received consent to proceed without the need for parental permission from the High Court of Johannesburg, which serves as the upper guardian of minors. 43…”

Section: Potential Strategiesmentioning

confidence: 99%

Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review

et al. 2020

View full text Add to dashboard Cite

Background: Adolescents in low-and middle-income countries (LMICs) have a high burden of HIV, increasing the importance of including adolescents in HIV research. Adolescence is a period of transition that introduces unique ethical challenges for HIV research. The aim of this paper is to describe the ethical-legal barriers to adolescent participation in HIV research studies and potential strategies for including adolescents in LMIC research studies.

show abstract

Enrolling HIV-positive adolescents in mental health research: A case study reflecting on legal and ethical complexities

Cited by 5 publications

References 42 publications

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review

Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A Systematic Review

Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review

Contact Info

Product

Resources

About