Qualitative (QL)

Bell, K., & Salmon, A. (2011). What women who use drugs have to say about ethical research: findings of an exploratory qualitative study.  Journal of empirical research on human research ethics, 6, 84-98.
Research risks and benefitsResearch trust and mistrustPeople at risk for or with substance abuse addictionsPeople who inject drugsClinical trials, Survey researchEthics educationCommunity organizationsCanadaQualitative (QL)

Brody, H., Croisant, S. A., Crowder, J. W., & Banda, J. P. (2015). Ethical issues in patient-centered outcomes research and comparative effectiveness research: a pilot study of community dialogue. Journal of Empirical Research on Human Research Ethics, 10 (1), 22-30.
Multicultural competenceAdults (other)Community organizationsUnited StatesQualitative (QL)

Brooks, R. A., Newman, P. A., Duan, N., & Ortiz, D. J. (2007). HIV vaccine trial preparedness among Spanish-speaking Latinos in the US. AIDS Care, 19(1), 52-58.
Research risks and benefits, Research trust and mistrust, Stigma, People at risk for HIV, Clinical trials, Community organizations, Health-care facilities, United States, Qualitative (QL)

Brown, E. J. & Hill, M. A. (2005). Perceptions of HIV risks and prevention strategies by rural and small city African Americans who use cocaine: Views from the inside. Issues in Mental Health Nursing, 26, 359-377.
Multicultural competence, Research risks and benefits, People at risk for HIV, People at risk for or with substance use addictions, Community-engaged research, Community organizations, Health-care facilities, United States, Qualitative (QL)

Chenneville, T., Lynn, V., Peacock, B., Turner, D., & Marhefka, S. L. (2015). Disclosure of HIV status among female youth with HIV. Ethics and Behavior, 25 (4), 314-331.
StigmaAdolescentsPeople living with HIV, Health-care facilitiesSurvey researchUnited States, Qualitative (QL)

Coetzee, T., Hoffmann, W. A., & De Roubaix, M. (2015). An evaluation of research ethics in undergraduate health science research methodology programs at a South African university.  Journal of Empirical Research on Human Research Ethics, 10 (4), 389-394.
Research misconductCollege students and young adultsEthics educationEducational institutions, South Africa, Qualitative (QL)

Deng, J., Qian, M., Gan, Y., Hu, S., Gao, J., Huang, Z., & Zhang, L. (2015). Emerging practices of counseling and psychotherapy in China: ethical dilemmas in dual relationships. Ethics and Behavior, 26 (1), 63-86.
Multicultural competenceResearch misconductTherapeutic misconceptionAdults (other)Survey researchHealth-care facilitiesChinaQualitative (QL)

Diviak, K. R., Curry, S. J., Emery, S. L., & Mermelstein, R. J. (2004). Human participants challenges in youth tobacco cessation research: researchers’ perspectives. Ethics & Behavior, 14(4), 321-334.
Assent and self-consent (children and adolescents), Informed consent (adults), Investigator practices and perspectives, IRB practices and perspectives, Adolescents, Investigators,People at risk for or with substance abuse addictions, Research staff, Clinical trials,Educational institutions, United StatesQualitative (QL)

DuBois, J. M., O’Leary, C. C., & Cottler, L. B. (2009).The attitudes of females in drug court toward additional safeguards in HIV prevention research. Prevention Science, 10(4), 345-352.
Informed consent (adults), Research risks and benefits, Adults (other), Incarcerated, detained, or previously incarcerated individuals, People at risk for HIV, People at risk for or with other STIs, People at risk for or with other substance abuse addictions, People who inject drugs, Community-engaged research, Prisons, United StatesQualitative (QL)

Eldridge, G. D., Robinson, R., Corey, S., Brems, C., & Johnson, M. E. (2012). Ethical challenges in conducting HIV/AIDS research in correctional settings. Journal of Correctional Health Care, 18(4), 309-318.
Confidentiality and privacy, Informed consent (adults), Investigator practices and perspectives, IRB practices and perspectives, Investigators, IRB members, Research staff, Incarcerated, detained, or previously incarcerated individuals, People at risk for HIV, Prisons, United States, Qualitative (QL)

Groves, A. K., Maman, S., Msomi, S., Makhanya, N., & Moodley, D. (2010). The complexity of consent: Women’s experiences testing for HIV at an antenatal clinical in Durban, South Africa. AIDS Care, 22(5), 538-544.
Informed consent (adults), Voluntariness and self-efficacy, People at risk for HIV, Health-care facilities, South Africa, Qualitative (QL)

Guadamuz, T. E., Goldsamt, L. A., & Boonmongkon, P. (2014). Consent challenges for participation of young men who have sex with men in HIV prevention research in Thailand. Ethics and Behavior, 25 (2), 180-195.
Assent and self-consent (children and adolescents), Informed consent (adults)Research risks and benefitsStigmaPeople at risk for HIVSexual and gender minoritiesThailandQualitative (QL)

Haire, B. (2013). Ethics of Medical Care and Clinical Research: A Qualitative Study of Principal Investigators in Biomedical HIV Prevention Research. Journal Of Medical Ethics: The Journal Of The Institute Of Medical Ethics, 39(4), 231-235.
Investigator practices and perspectives, Investigators, Research staff, Clinical trials, Health-care facilities, AustraliaQualitative (QL)

Hanson, B. L., Faulkner, S. A., Brems, C., Corey, S. L., Eldridge, G. D., Johnson, M. E. (2015). Key stakeholders’ perceptions of motivators for research participation among individuals who are incarcerated. JERHRE, 10 (4), 350-370.
Investigator practices and perspectivesIRB practices and perspectives, Voluntariness and self-efficacyIncarcerated, detained, or previously incarcerated individualsInvestigators, IRB members, Community-engaged researchPrisonsUnited StatesQualitative (QL)

Kapp, S. A. (2000). Pathways to Prison: Life Histories of Former Clients of the Child Welfare and Juvenile Justice Systems. Journal of Sociology & Social Welfare, 27, 63-74.
Incarcerated, detained, or previously incarcerated individualsCommunity-engaged researchPrisonsUnited StatesQualitative (QL)

Kassam-Adams, N., & Newman, E. (2002). The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P). General Hospital Psychiatry, 24(5), 336-342.
Assent and self-consent (children and adolescents), Children, Parents, Clinical trials,Survey research, Health-care facilities, United StatesQualitative (QL)

Kassam-Adams, N. Newman, E. (2005). Child and parent reactions to participation in clinical research. General Hospital Psychiatry, 27(1), 29-35.
Assent and self-consent (children and adolescents), Research risks and benefits, Research trust and mistrust, Children, Parents, Clinical trials, Survey research, Health-care facilities,United States, Qualitative (QL)

Kim, SYH, Holloway, R., Frank, S., Wilson, R., Kieburtz, K. (2008). Trust in early phase research: therapeutic optimism and protective pessimism. Medicine, Health Care, and Philosophy. 11(4), 393-401.
Informed consent (adults), IRB practices and perspectives, Research risks and benefits, Research trust and mistrust, Therapeutic misconception, IRB members, Clinical trials, Survey research, United States, Qualitative (QL)

Kostick, K. M., Weeks, M., & Mosher, H. (2014). Participant and staff experiences in a peed-delivered HIV prevention with injection drug users. JERHRE, 9 (1), 6-18.
Clinical efficacyInvestigator practices and perspectives, Research misconductInvestigatorsPeople at risk for HIVPeople who inject drugsCommunity-engaged researchCommunity organizationsUnited StatesQualitative (QL)

Lairumbi, G. M., Michael, P., Fitzpatrick, R., & English, M. C. (2012). Forms of benefit sharing in global health research undertaken in resource poor settings: A qualitative study of stakeholders views in Kenya. Philosophy, Ethics, and Humanities in Medicine, 7(7).
Research risks and benefits, Adults (other), Community Advisory Board, Investigators, IRB members, Policy makers, Clinical trials, Health-care facilities, South Africa, Qualitative (QL)

Lakes, K. D., Vaughan, E., Jones, M., Burke, W., Baker, D., & Swanson, J. M. (2012). Diverse perceptions of the informed consent process: Implications for the recruitment and participation of diverse communities in the National Childrens Study. American Journal of Community Psychology, 49, 215-232.
Assent and self-consent (children and adolescents), Informed consent (adults), Multicultural competence, Research risks and benefits, Children, Adults (other), United States, Qualitative (QL)

Madhivanan, P., Krupp, K., Kulkarni, V., Kulkarni, S., Vaidya, N., Shaheen, R. Philpott, S. & Fisher, C. B. (2014). HIV testing among pregnant women living with HIV in India: are private healthcare providers routinely violating women’s human rights? BMC International Health and Human Rights, 14(7).
Confidentiality and privacy, Informed consent (adults), People living with HIV, Clinical trials, Community organizations, Health-care facilities, India, Qualitative (QL)

Miller, V. A., Reynolds, W. W., Ittenbach, R. F., Luce, M. F., Beauchamp, T. L., & Nelson, R. M. (2009). Challenges in measuring a new construct: Perception of voluntariness for research and treatment decision making. Journal of empirical research on human research ethics: JERHRE, 4(3), 21-31.
Voluntariness and self-efficacy, Clinical Trials, Health-care facilities, United StatesQualitative (QL)

Oransky, M., Fisher, C. B., Mahadevan, M., & Singer, M. (2009). Barriers and opportunities for recruitment for nonintervention studies on HIV risk: Perspectives of street drug users. Substance Use& Misuse, 44, 1642-1659.
Research risks and benefitsResearch trust and mistrust, StigmaPeople at risk for HIV, People who inject drugsCommunity organizationsUnited StatesQualitative (QL)

Ott, M. A., Alexander, A. B., Lally, M., Steever, J. B., & Zimet, G. D. (2013). Preventive misconception and adolescents’ knowledge about HIV vaccine trials. Journal Of Medical Ethics: Journal Of The Institute Of Medical Ethics, 39(12), 765-771.
Assent and self-consent (children and adolescents), Therapeutic misconception,Adolescents, People at risk for HIV, People at risk for or with other STIs, Clinical trials,Health-care facilities, United StatesQualitative (QL)

Ott, M. A., Rosenberger, J. G., & Fortenberry, J. D. (2010). Parental permission and perceived research benefits in adolescent STI research.  Journal of empirical research on human research ethics: JERHRE, 5(2), 57-64.
Assent and self-consent (children and adolescents), Informed consent (adults), Research risks and benefits, Adolescents, Parents, People at risk for HIV, Clinical trials, Community organizations, Health-care facilities, United StatesQualitative (QL)

Palmer, B. W., Cassidy, E. L., Dunn, L. B., Spira, A. P., & Sheikh, J. I. (2008). Effective use of consent forms and interactive questions in the consent process. IRB: Ethics and Human Research, 30(2), 8-12.
Informed consent (adults), Voluntariness and self-efficacy, Adults with other health problems, Clinical trials, Health-care facilities, United StatesQualitative (QL)

Rajabiun, S., Mallinson, R. K., McCoy, K., Coleman, S., Drainoni, M., Rebholz, C., & Holbert, T. (2007). Getting me back on track: The role of outreach interventions in engaging and retaining people living with HIV/AIDS in medical care. AIDS Patient Care and STDs, 21(Supp. 1), S20-S29.
Clinical efficacy, Voluntariness and self-efficacy, People living with HIV, Health-care facilities, United States, Qualitative (QL)

Rautenbach, C., Lindegger, G., Slack, C., Wallace, M., & Newman, P. (2015). I’m positive, but I’m negative: competing voices in informed consent and implications for HIV vaccine trials. Journal of Empirical Research on Human Research Ethics, 10 (2), 151-156.
Informed consent (adults)People living with HIVClinical trialsHealth-care facilitiesSouth AfricaQualitative (QL)

Reed, E., Khoshnood, K., Blankenship, K. M., & Fisher, C. B. (2014). Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India. Journal Of Empirical Research On Human Research Ethics, 9(1), 19-28.
Confidentiality and privacy, Stigma, People involved in sex work, Community organizations, India, Qualitative (QL)

Scott, G. (2008). They got their program, and I got mine: A cautionary tale concerning the ethical implications of using respondent-driven sampling to study injection drug users. International Journal of Drug Policy, 19, 42-51.
Randomization, Research risks and benefits, People at risk for HIV, People who inject drugs, United States, Qualitative (QL)

Slomka, J., McCurdy, S., Ratliff, E. A., Timpson, S., & Williams, M. L. (2007). Perceptions of financial payment for research participation among African-American drug users in HIV studies. Journal of General Internal Medicine, 22, 1403-1409. Stirley, C. L. W., Callahan, C., & Cottler, L. B. (2008). Enrolling, retaining, and benefiting out-of-treatment drug users in intervention research. Journal of Empirical Research on Human Research Ethics, 3(3), 19-25.
Research risks and benefits, People at risk for HIV, People who inject drugs, Survey research, Neighborhoods, United States, Qualitative (QL)

Slomka, J., Ratliff, E. A., McCurdy, S. A., Timpson, S., & Williams, M.L. (2008). Decisions to participate in research: Views of underserved minority drug users with or at risk for HIV. AIDS Care, 20(10), 1224-1232.
Research risks and benefits, Voluntariness and self-efficacy, People at risk for HIV, People who inject drugs, Clinical trials, Health-care facilities, United States, Qualitative (QL)

Slomka, J., Ratliff, E. A., McCurdy, S., Timpson, S., & Williams, M. L. (2008). Perceptions of Risk in Research Participation Among Underserved Minority Drug Users. Substance Use & Misuse, 43(11), 1643-1655.
Research risks and benefits, People at risk for HIV, People who inject drugs, Clinical trials,Survey research, Community organizations, United StatesQualitative (QL)

Teti, M., Murray, C., Johnson, L., & Binson, D. (2012). Photovoice as a community-based participatory research method among women living with HIV/AIDS: ethical opportunities and challenges. Journal Of Empirical Research On Human Research Ethics: JERHRE, 7(4), 34-43.
Confidentiality and privacy, People living with HIV, Community-engaged research,Community organization, United States, Qualitative (QL)

Thokoane, C. (2014). Ethical challenges for piloting sexual health programs for youth in Hammanskraal, South Africa: bridging the gap between rights and services. Ethics and Behavior, 25 (2), 169-179.
Assent and self-consent (children and adolescents), AdolescentsCommunity-engaged researchHealth-care facilitiesSouth Africa, Qualitative (QL)

Timmermans, S. & McKay,T. (2009). Clinical trials as treatment option: Bioethics and health care disparities in substance dependency. Social Science & Medicine, 69, 1784-1790.
Randomization, Therapeutic misconception, People at risk for or with substance use addictions, Clinical trials, Health-care facilities, United States, Qualitative (QL)

Vallely, A., Lees, S., Shagi, C., Kasindi, S., Soteli, S., Kavit, N., Hayes, R. J. (2010). How informed is consent in vulnerable populations? Experience using a continuous consent process during the MDP301 vaginal microbicide trial in Mwanza, Tanzania. BMC Medical Ethics, 11(10), doi: 10.1186/1472-6939-11-10.
Informed consent (adults), People at risk for HIV, Clinical trials, Community organizations, Tanzania, Qualitative (QL)

Vreeman, R., Kamaara, E., Kamanda, A., Ayuku, D., Nyandiko, W., Atwoli, L., & … Braitstein, P. (2012). A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya. BMC Medical Ethics, 1323.
Informed consent (adults), Adults (other), Community-engaged research, Community organizations, Kenya, Qualitative (QL)

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