Development of a Directly Observed Therapy Adherence Intervention for Adolescents with Human Immunodeficiency Virus–1: Application of Focus Group Methodology to Inform Design, Feasibility, and Acceptability

PurposeTo obtain input from adolescents with human immunodeficiency virus–1 (HIV-1) infection to inform the design of a community-based modified directly observed therapy (MDOT) antiretroviral adherence intervention.MethodsPediatric AIDS Clinical Trials Group (PACTG) protocol 1036A conducted three focus groups with 17 adolescents aged 17–22 years (10 female, 65% African-American) from three geographically distinct US PACTG sites. Focus group sessions were scripted, audio-taped, and transcribed verbatim. A coding dictionary was developed and validated; Ethnograph version 5.08 was used to summarize coded data across and within the three sites. Prevalent themes were identified via frequencies and are reported as percentages.ResultsAdolescents provided the following specific input: the MDOT provider should be familiar with the participant and empathic; the MDOT location should be mutually agreed on, flexible, and private; and participant and provider communication should be bidirectional, preferably by phone. Ideally the MDOT program should be continued until adolescents independently demonstrate adherence and should include a weaning phase as a test of skill acquisition. The most commonly endorsed barrier to the proposed program was that MDOT would be an invasion of privacy. Initially, after introduction to the purpose of the focus group, all but one adolescent expressed the belief that MDOT could benefit persons other than themselves; however, at the conclusion of the focus group discussion, a significant shift in openness to the intervention occurred, in that 11 participants indicated they would consider participation in an MDOT program if such a program were offered.ConclusionsFocus group feedback clarified the feasibility, logistics, and patient concerns about the design and implementation of a proposed MDOT intervention for adolescents with HIV-1 infection who struggle with medication adherence.