“If it benefits someone, it will be good:” perspectives on research participation from pregnant women living with HIV

References

• AMPATH. (2021). Research. https://www.ampathkenya.org/research
   Google Scholar
• Avert. (2020). HIV and AIDS in East and Southern Africa Regional Overview. https://www.avert.org/professionals/hiv-around-world/sub-saharan-africa/overview#footnote13_g7enklc
   Google Scholar
• Corbin, J., & Strauss, A. (2014). Basics of qualitative research: Techniques and procedures for developing grounded theory (4 ed.). San Jose State University SAGE Publishing.
   Google Scholar
• Corneli, A. L., Piwoz, E. G., Bentley, M. E., Moses, A., Nkhoma, J. R., Tohill, B. C., Adair, L., Mtimuni, B., Ahmed, Y., Duerr, A., Kazembe, P., & van der Horst, C. (2007). Involving communities in the design of clinical trial protocols: The BAN study in Lilongwe, Malawi. Contemporary Clinical Trials, 28(1), 59–67. https://doi.org/10.1016/j.cct.2006.08.003
   PubMed Web of Science ®Google Scholar
• Fregonese, F. (2018). Community involvement in biomedical research conducted in the global health context; what can be done to make it really matter? BMC Medical Ethics, 19(1), 44. https://doi.org/10.1186/s12910-018-0283-4
   PubMedGoogle Scholar
• Georgetown. (n.d.). Executive Summary. https://bioethicsarchive.georgetown.edu/nbac/clinical/execsum.html
   Google Scholar
• Gill, P., Stewart, K., Treasure, E., & Chadwick, B. (2008). Methods of data collection in qualitative research: Interviews and focus groups. British Dental Journal, 204(6), 291–295. https://doi.org/10.1038/bdj.2008.192
   PubMed Web of Science ®Google Scholar
• Henderson, G. E., Churchill, L. R., Davis, A. M., Easter, M. M., Grady, C., Joffe, S., Kass, N., King, N. M. P., Lidz, C. W., Miller, F. G., Nelson, D. K., Peppercorn, J., Rothschild, B. B., Sankar, P., Wilfond, B. S., & Zimmer, C. R. (2007). Clinical trials and medical care: Defining the therapeutic misconception. PLoS Medicine, 4(11), e324–e324. https://doi.org/10.1371/journal.pmed.0040324
   PubMed Web of Science ®Google Scholar
• Indiana University School of Medicine. (2020). IUPUI AMPATH-Kenya. http://www.medicine.iupui.edu/kenya
   Google Scholar
• Kadam, R. A. (2017). Informed consent process: A step further towards making it meaningful!. Perspectives in Clinical Research, 8(3), 107–112. https://doi.org/10.4103/picr.PICR_147_16
   PubMedGoogle Scholar
• Karim, S. S. A., & Baxter, C. (2019). HIV incidence rates in adolescent girls and young women in sub-Saharan Africa. The Lancet Global Health, 7(11), e1470–e1471. https://doi.org/10.1016/S2214-109X(19)30404-8
   PubMed Web of Science ®Google Scholar
• Kochhar, S., Bonhoeffer, J., Jones, C. E., Muñoz, F. M., Honrado, A., Bauwens, J., Sobanjo-ter Meulen, A., & Hirschfeld, S. (2017). Immunization in pregnancy clinical research in low- and middle-income countries – study design, regulatory and safety considerations. Vaccine, 35(48, Part A), 6575–6581. https://doi.org/10.1016/j.vaccine.2017.03.103
   PubMed Web of Science ®Google Scholar
• Krubiner, C. B., Faden, R. R., Cadigan, R. J., Gilbert, S. Z., Henry, L. M., Little, M. O., Mastroianni, A. C., Namey, E. E., Sullivan, K. A., & Lyerly, A. D. (2016). Advancing HIV research with pregnant women. Aids (london, England), 30(15), 2261–2265. https://doi.org/10.1097/QAD.0000000000001214
   PubMed Web of Science ®Google Scholar
• McHenry, M. S., Nyandiko, W. M., Scanlon, M. L., Fischer, L. J., McAteer, C. I., Aluoch, J., Naanyu, V., & Vreeman, R. C. (2017). HIV stigma: Perspectives from Kenyan child caregivers and adolescents living with HIV. Journal of the International Association of Providers of AIDS Care (JIAPAC), 16(3), 215–225. https://doi.org/10.1177/2325957416668995
   PubMedGoogle Scholar
• Mercer, T., Gardner, A., Andama, B., Chesoli, C., Christoffersen-Deb, A., Dick, J., Einterz, R., Gray, N., Kimaiyo, S., Kamano, J., Maritim, B., Morehead, K., Pastakia, S., Ruhl, L., Songok, J., & Laktabai, J. (2018). Leveraging the power of partnerships: Spreading the vision for a population health care delivery model in western Kenya. Globalization and Health, 14(1), 44. https://doi.org/10.1186/s12992-018-0366-5
   PubMedGoogle Scholar
• Millar, H. C., Keter, A. K., Musick, B. S., Apondi, E., Wachira, J., MacDonald, K. R., Spitzer, R. F., & Braitstein, P. (2020). Decreasing incidence of pregnancy among HIV-positive adolescents in a large HIV treatment program in western Kenya between 2005 and 2017: A retrospective cohort study. Reproductive Health, 17(1), 191–191. https://doi.org/10.1186/s12978-020-01031-5
   PubMed Web of Science ®Google Scholar
• Mkwanazi, N. B., Rochat, T. J., & Bland, R. M. (2017). The Amagugu intervention: A qualitative investigation into maternal experiences and perspectives of a maternal HIV disclosure support intervention in rural South Africa. Health Policy and Planning, 32(9), 1231–1240. https://doi.org/10.1093/heapol/czx056
   PubMed Web of Science ®Google Scholar
• Mngadi, K. T., Singh, J. A., Mansoor, L. E., & Wassenaar, D. R. (2017). Undue inducement: A case study in CAPRISA 008. Journal of Medical Ethics, 43(12), 824–828. https://doi.org/10.1136/medethics-2016-103414
   PubMed Web of Science ®Google Scholar
• Molyneux, S., Mulupi, S., Mbaabu, L., & Marsh, V. (2012). Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. BMC Medical Ethics, 13(1), 13. https://doi.org/10.1186/1472-6939-13-13
   PubMed Web of Science ®Google Scholar
• Newington, L., & Metcalfe, A. (2014). Factors influencing recruitment to research: Qualitative study of the experiences and perceptions of research teams. BMC Medical Research Methodology, 14(1), 10–10. https://doi.org/10.1186/1471-2288-14-10
   PubMedGoogle Scholar
• Proctor, E., Silmere, H., Raghavan, R., Hovmand, P., Aarons, G., Bunger, A., Griffey, R., & Hensley, M. (2011). Outcomes for implementation research: Conceptual distinctions, measurement challenges, and research agenda. Administration and Policy in Mental Health and Mental Health Services Research, 38(2), 65–76. https://doi.org/10.1007/s10488-010-0319-7
   PubMed Web of Science ®Google Scholar
• Raciti, C. G., Enane, L. A., MacDonald, K. R., Whipple, E. C., Ott, M. A., & McHenry, M. S. (2021). Ethical considerations for research involving pregnant women living with HIV and their young children: A systematic review of the empiric literature and discussion. BMC Medical Ethics, 22(1), 38. https://doi.org/10.1186/s12910-021-00601-x
   PubMed Web of Science ®Google Scholar
• Sullivan, K. A., Little, M., Rosenberg, N. E., Mtande, T., Zimba, C., Jaffe, E., Anderson, J., Coleman, J. S., Gilbert, S., Gross Wolf, M. S., Hoffman, I., Rahangdale, L., Faden, R., & Lyerly, A. D. (2018). Women’s views about a paternal consent requirement for biomedical research in pregnancy. Journal of Empirical Research on Human Research Ethics, 13(4), 349–362. https://doi.org/10.1177/1556264618783834
   PubMed Web of Science ®Google Scholar