Stakeholder Perspectives on Research Consent and Reconsent for Procedures Involving Biological Samples and Biobanking of Children and Adolescents Living With HIV in Kenya
Objective To explore the perspectives of stakeholders on consenting and reconsenting children and adolescents living with HIV (CALWH) to participate in research involving biological sampling and biobanking. Stakeholders included CALWH, their caregivers, subject matter experts (SMEs) such as Institut...
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2024-12-01
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| Series: | Journal of the International Association of Providers of AIDS Care |
| Online Access: | https://doi.org/10.1177/23259582241305424 |
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| author | Josephine Aluoch BSC, MS Ashley Chory MPH Michael Scanlon MPH, MA Emma Gillette MPH Hillary Koros MS Dennis Munyoro BS Celestine Ashimosi MS Whitney Beigon BS Janet Lidweye MS Jack Nyagaya MS Allison DeLong MS Rami Kantor MD Rachel Christine Vreeman MD, MS Violet Naanyu PhD Winstone M. Nyandiko MBChB, MMED, MPH |
| author_facet | Josephine Aluoch BSC, MS Ashley Chory MPH Michael Scanlon MPH, MA Emma Gillette MPH Hillary Koros MS Dennis Munyoro BS Celestine Ashimosi MS Whitney Beigon BS Janet Lidweye MS Jack Nyagaya MS Allison DeLong MS Rami Kantor MD Rachel Christine Vreeman MD, MS Violet Naanyu PhD Winstone M. Nyandiko MBChB, MMED, MPH |
| author_sort | Josephine Aluoch BSC, MS |
| collection | DOAJ |
| description | Objective To explore the perspectives of stakeholders on consenting and reconsenting children and adolescents living with HIV (CALWH) to participate in research involving biological sampling and biobanking. Stakeholders included CALWH, their caregivers, subject matter experts (SMEs) such as Institutional Review Board (IRB) members, Community Advisory Board (CAB) members, Healthcare Providers, researchers, and community leaders. Study design This qualitative study was conducted at the Academic Model Providing Access to Healthcare (AMPATH) in Kenya. Semi-structured interviews were conducted with CALWH, their caregivers, and SMEs. Audio recordings were transcribed, thematically analyzed, and emerging themes derived. Results In total, 99 participants were interviewed, of which the majority (52%) were female; 50% of CALWH were female with a median age of 17.5 years (range 11-24); 70% of caregivers and 44% of SMEs were female. All SMEs, CALWH, and caregivers emphasized that recontacting and reconsenting were their strong preferences for the use of biospecimens and also an essential procedure to address legal and ethical considerations and confidentiality. All CALWH wanted consent to detail how they will be informed about research findings and emphasized making their results available to them. Caregivers highlighted the importance of trust in the use of the stored samples to be maintained as per the consents. Conclusion Our findings revealed that CALWH and their caregivers want researchers to go beyond the typical information provided about biospecimen storage and use. They desire to be recontacted and reconsented as well as maintain ongoing communication with the research team about the research findings. |
| format | Article |
| id | doaj-art-64a9ab716cca4dee9bdea63e93e7f4e8 |
| institution | Kabale University |
| issn | 2325-9582 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of the International Association of Providers of AIDS Care |
| spelling | doaj-art-64a9ab716cca4dee9bdea63e93e7f4e82024-12-13T11:04:15ZengSAGE PublishingJournal of the International Association of Providers of AIDS Care2325-95822024-12-012310.1177/23259582241305424Stakeholder Perspectives on Research Consent and Reconsent for Procedures Involving Biological Samples and Biobanking of Children and Adolescents Living With HIV in KenyaJosephine Aluoch BSC, MS0Ashley Chory MPH1 Michael Scanlon MPH, MA2Emma Gillette MPH3 Hillary Koros MS4Dennis Munyoro BS5Celestine Ashimosi MS6Whitney Beigon BS7Janet Lidweye MS8Jack Nyagaya MS9Allison DeLong MS10Rami Kantor MD11 Rachel Christine Vreeman MD, MS12Violet Naanyu PhD13Winstone M. Nyandiko MBChB, MMED, MPH14 , Eldoret, Kenya Department of Global Health and Health Systems Design, , New York, NY, USA Indiana University Center for Global Health, Indianapolis, IN, USA Department of Global Health and Health Systems Design, , New York, NY, USA , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Providence, RI, USA , Providence, RI, USA Department of Global Health and Health Systems Design, , New York, NY, USA , Eldoret, Kenya , Eldoret, KenyaObjective To explore the perspectives of stakeholders on consenting and reconsenting children and adolescents living with HIV (CALWH) to participate in research involving biological sampling and biobanking. Stakeholders included CALWH, their caregivers, subject matter experts (SMEs) such as Institutional Review Board (IRB) members, Community Advisory Board (CAB) members, Healthcare Providers, researchers, and community leaders. Study design This qualitative study was conducted at the Academic Model Providing Access to Healthcare (AMPATH) in Kenya. Semi-structured interviews were conducted with CALWH, their caregivers, and SMEs. Audio recordings were transcribed, thematically analyzed, and emerging themes derived. Results In total, 99 participants were interviewed, of which the majority (52%) were female; 50% of CALWH were female with a median age of 17.5 years (range 11-24); 70% of caregivers and 44% of SMEs were female. All SMEs, CALWH, and caregivers emphasized that recontacting and reconsenting were their strong preferences for the use of biospecimens and also an essential procedure to address legal and ethical considerations and confidentiality. All CALWH wanted consent to detail how they will be informed about research findings and emphasized making their results available to them. Caregivers highlighted the importance of trust in the use of the stored samples to be maintained as per the consents. Conclusion Our findings revealed that CALWH and their caregivers want researchers to go beyond the typical information provided about biospecimen storage and use. They desire to be recontacted and reconsented as well as maintain ongoing communication with the research team about the research findings.https://doi.org/10.1177/23259582241305424 |
| spellingShingle | Josephine Aluoch BSC, MS Ashley Chory MPH Michael Scanlon MPH, MA Emma Gillette MPH Hillary Koros MS Dennis Munyoro BS Celestine Ashimosi MS Whitney Beigon BS Janet Lidweye MS Jack Nyagaya MS Allison DeLong MS Rami Kantor MD Rachel Christine Vreeman MD, MS Violet Naanyu PhD Winstone M. Nyandiko MBChB, MMED, MPH Stakeholder Perspectives on Research Consent and Reconsent for Procedures Involving Biological Samples and Biobanking of Children and Adolescents Living With HIV in Kenya Journal of the International Association of Providers of AIDS Care |
| title | Stakeholder Perspectives on Research
Consent and Reconsent for Procedures Involving Biological Samples and
Biobanking of Children and Adolescents Living With HIV in Kenya |
| title_full | Stakeholder Perspectives on Research
Consent and Reconsent for Procedures Involving Biological Samples and
Biobanking of Children and Adolescents Living With HIV in Kenya |
| title_fullStr | Stakeholder Perspectives on Research
Consent and Reconsent for Procedures Involving Biological Samples and
Biobanking of Children and Adolescents Living With HIV in Kenya |
| title_full_unstemmed | Stakeholder Perspectives on Research
Consent and Reconsent for Procedures Involving Biological Samples and
Biobanking of Children and Adolescents Living With HIV in Kenya |
| title_short | Stakeholder Perspectives on Research
Consent and Reconsent for Procedures Involving Biological Samples and
Biobanking of Children and Adolescents Living With HIV in Kenya |
| title_sort | stakeholder perspectives on research consent and reconsent for procedures involving biological samples and biobanking of children and adolescents living with hiv in kenya |
| url | https://doi.org/10.1177/23259582241305424 |
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