Ethical Issues in Engaging Lost To Follow Up Youth in HIV Care and Research

Youth living with HIV (YLWH) are underrepresented in sexual health research, and potentially have issues engaging in routine care for various reasons including: concerns about safety, privacy, discrimination and stigmatizing experiences in health care, and potential for research harm. There is a need for research on how best to engage youth who are not receiving care or are sporadic users of care, as well as research to identify ethical, cultural, regulatory or legal challenges that may hinder youth from engaging in HIV care and research. This study entitled "Ethical Issues to Engaging Lost to Follow Up Youth in HIV Care and Research" employed a concurrent mixed methods design to examine ethical considerations in care and research from the viewpoint of community stakeholders. Qualitative individual interviews were conducted with two stakeholder groups to elucidate perspectives on barriers to care and involvement in research among this hard-to-reach, vulnerable population. Youth stakeholders--whom identified as age 15-24, LWH and having trouble staying engaged in HIV care-- and professional stakeholders-- who identified as having experience working with YLWH were invited to participate in this study by taking part in an individual interview. Youth stakeholders were asked to complete a modified medical mistrust quantitative survey at the end of their interview to examine characteristics of medical mistrust among this special population. The study team has analyzed these stakeholder perceptions to better understand care and research challenges and characteristics of medical mistrust among HIV positive youth that are lost to follow up care.

Meardith Pooler-Burgess, DrPH – Research Faculty, College of Medicine, Department of Behavioral Science and Social Medicine, Center for Translational Behavioral Science, Florida State University; Sylvie Naar, PhD – College of Medicine, Department of Behavioral Science and Social Medicine, Center for Translational Behavioral Science – Florida State University