“[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya
Abstract Introduction Engaging adolescents in HIV care and research promotes the development of interventions tailored to their unique needs. Guidelines generally require parental permission for adolescents to receive HIV care/testing or participate in research, with exceptions. Nevertheless, parent...
| Main Authors: | , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2023-01-01
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| Series: | Journal of the International AIDS Society |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/jia2.26057 |
| _version_ | 1811176468203438080 |
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| author | Huangqianyu Li Seema K. Shah Elise Healy Kawango Agot Jillian Neary Kate Wilson Jacinta Badia Winnie O. Atieno Hellen Moraa Hendrika Meischke James Kibugi Irene Inwani Nok Chhun Ferdinand C. Mukumbang Grace John‐Stewart Pamela Kohler Kristin Beima‐Sofie |
| author_facet | Huangqianyu Li Seema K. Shah Elise Healy Kawango Agot Jillian Neary Kate Wilson Jacinta Badia Winnie O. Atieno Hellen Moraa Hendrika Meischke James Kibugi Irene Inwani Nok Chhun Ferdinand C. Mukumbang Grace John‐Stewart Pamela Kohler Kristin Beima‐Sofie |
| author_sort | Huangqianyu Li |
| collection | DOAJ |
| description | Abstract Introduction Engaging adolescents in HIV care and research promotes the development of interventions tailored to their unique needs. Guidelines generally require parental permission for adolescents to receive HIV care/testing or participate in research, with exceptions. Nevertheless, parental permission requirements can restrict adolescent involvement in care and research. To better appreciate prospects for policy reform, we sought to understand the perspectives of stakeholders involved in the development, review and implementation of policies related to adolescents living with HIV. Methods Semi‐structured individual interviews (IDIs) were conducted from October 2019 to March 2020 with 18 stakeholders with expertise in the (1) development of policy through membership in the Law Society of Kenya or work as a health policy official; (2) review of policy through ethics review committee service; or (3) implementation of policy through involvement in adolescent education. IDIs were conducted in English by Kenyan social scientists, audio‐recorded and transcribed verbatim. We used thematic analysis to identify themes around how policies can be reformed to improve adolescent engagement in HIV care and research. Results Our analysis identified three major themes. First, policies should be flexible rather than setting an age of consent. Stakeholders noted that adolescents’ capacity for engagement in HIV care and research depended on context, perceived risks and benefits, and “maturity”—and that age was a poor proxy for the ability to understand. Second, policies should evolve with changing societal views about adolescent autonomy. Participants recognized a generational shift in how adolescents learn and mature, suggesting the need for a more frequent review of HIV care and research guidelines. Third, adults should empower adolescent decision‐making. Stakeholders felt that caregivers can gradually involve adolescents in decision‐making to equip them to gain ownership over their health and lives, improving their confidence and capacity. Conclusions Revising relevant laws to consider context, alternative measures of maturity, and evolving societal views about adolescence, along with supporting caregivers to assist in developing adolescent autonomy may promote more equitable and representative participation of adolescents in HIV care and research. Additional research should explore how to support caregivers and other adults to empower adolescents and improve stakeholder engagement in a more routine process of policy reform. |
| first_indexed | 2024-04-10T19:52:01Z |
| format | Article |
| id | doaj.art-b32cd90c0cbf4e4f8bf8aebd10b96d41 |
| institution | Directory Open Access Journal |
| issn | 1758-2652 |
| language | English |
| last_indexed | 2024-04-10T19:52:01Z |
| publishDate | 2023-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the International AIDS Society |
| spelling | doaj.art-b32cd90c0cbf4e4f8bf8aebd10b96d412023-01-28T02:15:31ZengWileyJournal of the International AIDS Society1758-26522023-01-01261n/an/a10.1002/jia2.26057“[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in KenyaHuangqianyu Li0Seema K. Shah1Elise Healy2Kawango Agot3Jillian Neary4Kate Wilson5Jacinta Badia6Winnie O. Atieno7Hellen Moraa8Hendrika Meischke9James Kibugi10Irene Inwani11Nok Chhun12Ferdinand C. Mukumbang13Grace John‐Stewart14Pamela Kohler15Kristin Beima‐Sofie16Department of Health Services University of Washington Seattle Washington USADepartment of Pediatrics Northwestern University Feinberg School of Medicine Chicago Illinois USADepartment of Global Health University of Washington Seattle Washington USAImpact Research and Development Organization Kisumu KenyaDepartment of Medicine University of Washington Seattle Washington USADepartment of Global Health University of Washington Seattle Washington USAImpact Research and Development Organization Kisumu KenyaImpact Research and Development Organization Kisumu KenyaDepartment of Pediatrics and Child Health University of Nairobi Nairobi KenyaDepartment of Health Services University of Washington Seattle Washington USAImpact Research and Development Organization Kisumu KenyaUniversity 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 USADepartment of Global Health University of Washington Seattle Washington USADepartment of Global Health University of Washington Seattle Washington USAAbstract Introduction Engaging adolescents in HIV care and research promotes the development of interventions tailored to their unique needs. Guidelines generally require parental permission for adolescents to receive HIV care/testing or participate in research, with exceptions. Nevertheless, parental permission requirements can restrict adolescent involvement in care and research. To better appreciate prospects for policy reform, we sought to understand the perspectives of stakeholders involved in the development, review and implementation of policies related to adolescents living with HIV. Methods Semi‐structured individual interviews (IDIs) were conducted from October 2019 to March 2020 with 18 stakeholders with expertise in the (1) development of policy through membership in the Law Society of Kenya or work as a health policy official; (2) review of policy through ethics review committee service; or (3) implementation of policy through involvement in adolescent education. IDIs were conducted in English by Kenyan social scientists, audio‐recorded and transcribed verbatim. We used thematic analysis to identify themes around how policies can be reformed to improve adolescent engagement in HIV care and research. Results Our analysis identified three major themes. First, policies should be flexible rather than setting an age of consent. Stakeholders noted that adolescents’ capacity for engagement in HIV care and research depended on context, perceived risks and benefits, and “maturity”—and that age was a poor proxy for the ability to understand. Second, policies should evolve with changing societal views about adolescent autonomy. Participants recognized a generational shift in how adolescents learn and mature, suggesting the need for a more frequent review of HIV care and research guidelines. Third, adults should empower adolescent decision‐making. Stakeholders felt that caregivers can gradually involve adolescents in decision‐making to equip them to gain ownership over their health and lives, improving their confidence and capacity. Conclusions Revising relevant laws to consider context, alternative measures of maturity, and evolving societal views about adolescence, along with supporting caregivers to assist in developing adolescent autonomy may promote more equitable and representative participation of adolescents in HIV care and research. Additional research should explore how to support caregivers and other adults to empower adolescents and improve stakeholder engagement in a more routine process of policy reform.https://doi.org/10.1002/jia2.26057adolescent HIVHIV/AIDS researchbioethicsconsentdecision‐makingresearch regulation |
| spellingShingle | Huangqianyu Li Seema K. Shah Elise Healy Kawango Agot Jillian Neary Kate Wilson Jacinta Badia Winnie O. Atieno Hellen Moraa Hendrika Meischke James Kibugi Irene Inwani Nok Chhun Ferdinand C. Mukumbang Grace John‐Stewart Pamela Kohler Kristin Beima‐Sofie “[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya Journal of the International AIDS Society adolescent HIV HIV/AIDS research bioethics consent decision‐making research regulation |
| title | “[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya |
| title_full | “[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya |
| title_fullStr | “[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya |
| title_full_unstemmed | “[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya |
| title_short | “[T]he laws need to change to reflect current society”: Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya |
| title_sort | t he laws need to change to reflect current society insights from stakeholders involved in development review or implementation of policies about adolescent consent for hiv testing care and research in kenya |
| topic | adolescent HIV HIV/AIDS research bioethics consent decision‐making research regulation |
| url | https://doi.org/10.1002/jia2.26057 |
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