‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research?
Introduction Efforts to improve health outcomes among adolescents and young adults living with HIV (ALHs) are hampered by limited adolescent engagement in HIV-related research. We sought to understand the views of adolescents, caregivers and healthcare workers (HCWs) about who should make decisions...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2023-11-01
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| Series: | BMJ Global Health |
| Online Access: | https://gh.bmj.com/content/8/11/e012966.full |
| _version_ | 1797428228305977344 |
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| author | Grace John-Stewart Ferdinand C Mukumbang Kate S Wilson Pamela Kohler Seema K Shah Jillian Neary Kawango Agot Jacinta Badia Nok Chhun Irene Inwani Kristen Beima-Sofie Huangqianyu Li Elise Healy James Kibugi |
| author_facet | Grace John-Stewart Ferdinand C Mukumbang Kate S Wilson Pamela Kohler Seema K Shah Jillian Neary Kawango Agot Jacinta Badia Nok Chhun Irene Inwani Kristen Beima-Sofie Huangqianyu Li Elise Healy James Kibugi |
| author_sort | Grace John-Stewart |
| collection | DOAJ |
| description | Introduction Efforts to improve health outcomes among adolescents and young adults living with HIV (ALHs) are hampered by limited adolescent engagement in HIV-related research. We sought to understand the views of adolescents, caregivers and healthcare workers (HCWs) about who should make decisions regarding ALHs’ research participation.Methods We conducted focus group discussions (FGDs) and in-depth interviews (IDIs) with ALHs (aged 14–24 years), caregivers of ALHs and HCWs from six HIV care clinics in Western Kenya. We used semi-structured guides to explore ALHs’ involvement in research decisions. Transcripts were analysed using thematic analysis; perspectives were triangulated between groups.Results We conducted 24 FGDs and 44 IDIs: 12 FGDs with ALHs, 12 with caregivers, and 44 IDIs with HCWs, involving 216 participants. HCWs often suggested that HIV research decision-making should involve caregivers and ALHs deciding together. In contrast, ALHs and parents generally thought decisions should be made individually, whether by HCWs/research teams (although this is likely ethically problematic), adolescents or caregivers. Caregiver and ALH preferences depended on ALHs’ age, with younger ALHs requiring more support. A few caregivers felt that ALHs should consult with the research team/HCWs due to their greater knowledge of clinical care. ALHs emphasised that they should independently decide because they thought they had the right to do so and the capacity to consent. Poor communication and parental non-disclosure of HIV status influenced ALHs’ views to exclude caregivers from decision-making. Regarding influences on research decision-making, ALHs were more willing to participate based on perceived contribution to science and less interested in participating in studies with potential risks, including loss of confidentiality.Discussion While research teams and HCWs felt that adolescents and caregivers should jointly make research decisions, ALHs and caregivers generally felt individuals should make decisions. As ALHs sometimes find caregiver support lacking, improving family dynamics might enhance research engagement. |
| first_indexed | 2024-03-09T08:55:02Z |
| format | Article |
| id | doaj.art-49f763bfed8747459ab5c5942a511448 |
| institution | Directory Open Access Journal |
| issn | 2059-7908 |
| language | English |
| last_indexed | 2024-03-09T08:55:02Z |
| publishDate | 2023-11-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Global Health |
| spelling | doaj.art-49f763bfed8747459ab5c5942a5114482023-12-02T13:15:08ZengBMJ Publishing GroupBMJ Global Health2059-79082023-11-0181110.1136/bmjgh-2023-012966‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research?Grace John-Stewart0Ferdinand C Mukumbang1Kate S Wilson2Pamela Kohler3Seema K Shah4Jillian Neary5Kawango Agot6Jacinta Badia7Nok Chhun8Irene Inwani9Kristen Beima-Sofie10Huangqianyu Li11Elise Healy12James Kibugi13University of Nairobi/Kenyatta National Hospital, Nairobi, KenyaDepartment of Global Health, University of Washington, Seattle, Washington, USADepartment of Global Health, University of Washington, Seattle, Washington, USADepartment of Global Health, University of Washington, Seattle, Washington, USAUniversity of Nairobi/Kenyatta National Hospital, Nairobi, KenyaDepartment of Global Health, University of Washington, Seattle, Washington, USAImpact Research and Development Organization, Kisumu, KenyaImpact Research and Development Organization, Kisumu, KenyaDepartment of Global Health, University of Washington, Seattle, Washington, USAUniversity of Nairobi/Kenyatta National Hospital, Nairobi, KenyaDepartment of Global Health, University of Washington, Seattle, Washington, USADepartment of Health Services, University of Washington-Seattle Campus, Seattle, Washington, USADepartment of Global Health, University of Washington, Seattle, Washington, USAImpact Research and Development Organization, Kisumu, KenyaIntroduction Efforts to improve health outcomes among adolescents and young adults living with HIV (ALHs) are hampered by limited adolescent engagement in HIV-related research. We sought to understand the views of adolescents, caregivers and healthcare workers (HCWs) about who should make decisions regarding ALHs’ research participation.Methods We conducted focus group discussions (FGDs) and in-depth interviews (IDIs) with ALHs (aged 14–24 years), caregivers of ALHs and HCWs from six HIV care clinics in Western Kenya. We used semi-structured guides to explore ALHs’ involvement in research decisions. Transcripts were analysed using thematic analysis; perspectives were triangulated between groups.Results We conducted 24 FGDs and 44 IDIs: 12 FGDs with ALHs, 12 with caregivers, and 44 IDIs with HCWs, involving 216 participants. HCWs often suggested that HIV research decision-making should involve caregivers and ALHs deciding together. In contrast, ALHs and parents generally thought decisions should be made individually, whether by HCWs/research teams (although this is likely ethically problematic), adolescents or caregivers. Caregiver and ALH preferences depended on ALHs’ age, with younger ALHs requiring more support. A few caregivers felt that ALHs should consult with the research team/HCWs due to their greater knowledge of clinical care. ALHs emphasised that they should independently decide because they thought they had the right to do so and the capacity to consent. Poor communication and parental non-disclosure of HIV status influenced ALHs’ views to exclude caregivers from decision-making. Regarding influences on research decision-making, ALHs were more willing to participate based on perceived contribution to science and less interested in participating in studies with potential risks, including loss of confidentiality.Discussion While research teams and HCWs felt that adolescents and caregivers should jointly make research decisions, ALHs and caregivers generally felt individuals should make decisions. As ALHs sometimes find caregiver support lacking, improving family dynamics might enhance research engagement.https://gh.bmj.com/content/8/11/e012966.full |
| spellingShingle | Grace John-Stewart Ferdinand C Mukumbang Kate S Wilson Pamela Kohler Seema K Shah Jillian Neary Kawango Agot Jacinta Badia Nok Chhun Irene Inwani Kristen Beima-Sofie Huangqianyu Li Elise Healy James Kibugi ‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research? BMJ Global Health |
| title | ‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research? |
| title_full | ‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research? |
| title_fullStr | ‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research? |
| title_full_unstemmed | ‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research? |
| title_short | ‘I feel that I should decide on my own….’: who should be involved in the decision-making process for adolescent involvement in HIV research? |
| title_sort | i feel that i should decide on my own who should be involved in the decision making process for adolescent involvement in hiv research |
| url | https://gh.bmj.com/content/8/11/e012966.full |
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