Suchergebnisse

ABSTRACTGiven the burden of HIV and other sexually transmitted infections among adolescents who are legal minors, it is critical that they be included in biomedical sexual health trials to ensure that new prevention and treatment interventions are safe, effective, and acceptable for their use. However, adolescents are often not well represented in clinical trials. We provide an overview of the available evidence regarding adolescent and parent willingness for adolescents to participate in biomedical sexual health trials, parental involvement in the permission‐consent process, management of differences and discord among adolescents and parents, and parental involvement throughout the study period. We also outline recommendations for current practice and areas for future research.

A greater understanding of participant views regarding reimbursement will help investigators plan studies that have better potential for reaching target enrollment, maximize efficient recruitment, maintain scientific integrity, and enhance retention over time. As part of a clinical trial in the area of sexual health, healthy women's perceptions of reimbursement for research participation were investigated. Semi-structured, audio-recorded, qualitative interviews were conducted immediately upon women's completion of the clinical trial to enable a participant-driven understanding of perceptions about monetary reimbursement. Audio-recordings were transcribed and analyzed using framework analysis. Women (N = 30) had a mean age of 29.5 ± 5.7 years (range 22–45 years). Sixty-three percent of participants (n = 19) were non-Hispanic (white n = 13, black n = 4, and Asian n = 2), while the remaining were Hispanic (n = 11). Seventy-three percent (n = 22) reported previous participation in research. In general, women viewed reimbursement as a benefit to research participation, the amount of which should reflect time, the inconvenience to the research subject, and the potential for unknown risks in the short- and long-term. They believed reimbursement should take into account the degree of risk of the study, with investigations of experimental products offering greater reimbursement. Women believed that monetary reimbursement is unlikely to coerce an individual to volunteer for a study involving procedures or requirements that they found unacceptable. The results of this study can be used to provide guidance to those planning and evaluating reimbursement for research participation.

The objective of this study is to understand the resolution of discordance between adolescent–parent dyads about participation in research. Adolescent (14-17 years) and parent dyads were recruited from NYC pediatric clinics to assess attitudes toward research participation. A subset of dyads participated in videotaped discussions about participation in a hypothetical study. Videos from dyads that held strongly discordant opinions about participation ( n = 30) were content-coded and analyzed using a thematic framework approach. Strategies used to resolve discordance included asserting authority, granting autonomy, or recognizing inaccurate assumptions using a variety of communication behaviors. Missed opportunities to enroll initially discordant dyads may be avoided by allowing time for adolescents and parents to elicit information, clarify a situation, or convince the other.

Little is known about how adolescents' and parents' thoughts about participation in clinical trials change over time. In this study, adolescent (14-17 years)–parent dyads were asked about willingness to participate in a hypothetical reproductive health study. A year later, they were asked how their thoughts about the study had changed. Qualitative responses were coded and analyzed using framework analysis. Thirty-two percent of adolescents and 18% of parents reported changes in thoughts; reasons included general changes in perception, clearer understanding, new knowledge or experiences, increased maturity/age of adolescents, and changes in participants independent of the study. Adolescents and parents may benefit from learning about studies multiple times, and investigators should account for development and new experiences to optimize adolescent research enrollment.

AbstractIntroductionThere is a research gap in how mental health and cognition are associated with antiretroviral treatment (ART) adherence among people living with HIV (PLWH) in Kazakhstan.MethodsWe randomly selected and enrolled 230 PLWH from the Almaty City AIDS Center registry (June−November 2019) into a cross‐sectional study. We examined associations between self‐reported ART adherence for the last 1 and 2 weeks; the Adherence Self‐Efficacy Scale (ASES) and symptoms of depression (Patient Health Questionnaire‐9 [PHQ‐9]), anxiety (Generalized Anxiety Disorder tool [GAD‐7]), post‐traumatic stress disorder (PTSD Checklist [PTSD]); cognitive function (PROMIS v2.0 Adult Cognitive Function 8a short form) and forgetfulness (Forgetfulness Assessment Inventory). We used cut points of ≥5 for at least mild and ≥10 for at least moderate symptom severity for PHQ‐9 and GAD‐7 and of ≥44 for PTSD. Logistic and linear regression analyses were used.ResultsParticipants' median age was 40.0 (IQR: 34−47) with 40.9% (n = 94) of females in the sample. Those who missed at least one pill for the last 2 weeks had higher odds of reporting at least mild depression (aOR = 3.34, 95% CI: 1.22–9.11, p < 0.05); mild anxiety (aOR = 3.27, 95% CI: 1.20–8.92, p < 0.05); and PTSD (aOR = 4.04, 95% CI: 1.15–14.21, p < 0.05) symptoms. Participants who missed at least one pill for the last week had higher odds of at least mild depression (aOR = 7.74, 95% CI: 1.31–45.7, p < 0.05), moderate anxiety (aOR = 21.33, 95% CI: 3.24–140.33, p < 0.005) and PTSD (aOR = 13.81, 95% CI: 2.36–80.84, p < 0.005) symptoms. Participants with better cognitive function had lower odds of non‐adherence over the last week (aOR = 0.88, 95% CI: 0.81–0.96, p < 0.005) and higher ASES scores (β = 0.26, 95% CI: 0.13–0.40, p < 0.005). Poor memory was associated with higher odds of non‐adherence over the last week (aOR = 4.64, 95% CI: 1.76–12.24, p < 0.005) and lower ASES score (β = −0.31, 95% CI: −0.45 to 0.16, p < 0.005). Those who had at least mild depression (β = −0.21, 95% CI: −0.35 to −0.07, p < 0.005); moderate anxiety (β = −0.21, 95% CI: −0.34 to −0.07, p < 0.005) and PTSD (β = −0.19, 95% CI: −0.33 to −0.05, p < 0.005) symptoms had lower ASES scores.ConclusionsDepression, anxiety and PTSD symptoms, poorer cognition, and forgetfulness were associated with poorer ART adherence and worse adherence self‐efficacy. It is crucial to assess and treat mental illness and provide support for PLWH with worsened cognition to enhance ART adherence.

AbstractIntroductionKazakhstan has one of the fastest‐growing HIV epidemics in the world, with increasing rates among adolescents and young adults (AYA). Innovative strategies are needed to increase HIV testing uptake and decrease HIV stigma among AYA. Citizen science, defined as the active engagement of the general public in scientific research tasks, promotes and facilitates community engagement throughout the research process. This citizen science study used crowdsourcing to engage AYA in Kazakhstan to develop a digital intervention to reduce HIV stigma and promote HIV self‐testing. Our objectives in this paper are to describe the approach used, its feasibility and acceptability, and AYA motivations for and lessons learned collaborating on the study.MethodsFrom October 2021 to July 2022, in collaboration with a Community Collaborative Research Board and a Youth Advisory Board, we developed an open call requesting multimedia submissions to reduce HIV testing stigma. Eligible submissions were separated by age group (13−19 or 20−29 years) and judged by a panel composed of AYA (n = 23), healthcare professionals (n = 12), and representatives from the local government and non‐governmental organizations (n = 17). Each entry was reviewed by at least four judges and ranked on a 5‐point scale. The top 20 open call contestants were asked to submit self‐recordings sharing their motivation for and experience participating in the contest and lessons learned. Descriptive statistics were calculated for quantitative data. Qualitative data were coded using open coding.ResultsWe received 96 submissions from 77 youth across Kazakhstan. Roughly, three‐quarters (n = 75/96) of entries met judging eligibility criteria. Of the eligible entries, over half (n = 39/75) scored 3.5 or higher on a 5‐point scale (70.0%). The most frequent types of entries were video (n = 36/96, 37.5%), image (n = 28/96, 29.2%) and text (n = 24/96, 25.0%). AYA's primary motivations for collaborating on the study included a desire to improve society and help youth. The main challenges included creating content to address complex information using simple language, finding reliable information online and technological limitations.ConclusionsCrowdsourcing was feasible and highly acceptable among AYA in Kazakhstan. Citizen science approaches hold great promise for addressing the increasingly complex health and social challenges facing communities today.