Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review
Abstract Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to ident...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-01-01
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| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12910-023-00996-9 |
| _version_ | 1797362893101989888 |
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| author | Cindy Peltier Sarah Dickson Viviane Grandpierre Irina Oltean Lorrilee McGregor Emilie Hageltorn Nancy L. Young |
| author_facet | Cindy Peltier Sarah Dickson Viviane Grandpierre Irina Oltean Lorrilee McGregor Emilie Hageltorn Nancy L. Young |
| author_sort | Cindy Peltier |
| collection | DOAJ |
| description | Abstract Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. Results We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. Conclusions Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children. |
| first_indexed | 2024-03-08T16:12:59Z |
| format | Article |
| id | doaj.art-128efcb1b9ff4d1e99f129d43399d6b1 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-03-08T16:12:59Z |
| publishDate | 2024-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-128efcb1b9ff4d1e99f129d43399d6b12024-01-07T12:43:42ZengBMCBMC Medical Ethics1472-69392024-01-0125111210.1186/s12910-023-00996-9Culturally appropriate consent processes for community-driven indigenous child health research: a scoping reviewCindy Peltier0Sarah Dickson1Viviane Grandpierre2Irina Oltean3Lorrilee McGregor4Emilie Hageltorn5Nancy L. Young6Schulich School of Education, Nipissing UniversityChildren’s Hospital of Eastern Ontario (CHEO) Research InstituteChildren’s Hospital of Eastern Ontario (CHEO) Research InstituteDepartment of Health Research Methods, Evidence and Impact, McMaster UniversityNorthern Ontario School of MedicineChildren’s Hospital of Eastern Ontario (CHEO) Research InstituteChildren’s Hospital of Eastern Ontario (CHEO) Research InstituteAbstract Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. Results We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. Conclusions Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children.https://doi.org/10.1186/s12910-023-00996-9Indigenous peoplesMinorsParental consentEthics, researchChildAdolescent |
| spellingShingle | Cindy Peltier Sarah Dickson Viviane Grandpierre Irina Oltean Lorrilee McGregor Emilie Hageltorn Nancy L. Young Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review BMC Medical Ethics Indigenous peoples Minors Parental consent Ethics, research Child Adolescent |
| title | Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review |
| title_full | Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review |
| title_fullStr | Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review |
| title_full_unstemmed | Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review |
| title_short | Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review |
| title_sort | culturally appropriate consent processes for community driven indigenous child health research a scoping review |
| topic | Indigenous peoples Minors Parental consent Ethics, research Child Adolescent |
| url | https://doi.org/10.1186/s12910-023-00996-9 |
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