Recruitment and Retention of Adolescent Participants in HIV Research: Findings From the REACH (Reaching for Excellence in Adolescent Care and Health) Project

Stanford, P. D.; Monte, Dina A; Briggs, Felecia M; Flynn, Patricia M.; Tanney, Mary; Ellenberg, Jonas H.; Clingan, Kathy L.; Rogers, Audrey Smith

doi:10.1016/s1054-139x(02)00392-0

Cited by 59 publications

(60 citation statements)

References 22 publications

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“…For example, a longitudinal HIV study involving adolescents demonstrates that honoring privacy and altruism were two of the most important factors that affected study recruitment and retention. [4] There are at least two studies that have shown that the requirement of parental consent can affect adolescent participation in survey research. One study where parental/guardian consent was required for a survey on adolescent condom use failed to collect 81% of the questionnaires.…”

Section: Discussionmentioning

confidence: 99%

STI Research: Recruiting an Unbiased Sample

Reed¹,

Thistlethwaite²,

Huppert³

2007

Journal of Adolescent Health

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Purpose-Although minors may legally consent for clinical care of sexually transmitted infections (STI) in all states, research participation often requires parental consent. We examined whether age, race, and parental barriers differed between those adolescents who accepted versus refused enrollment in a minimal risk STI research study.Methods-A cross sectional sample (age 13-21 years, sexually active females, presenting to an Emergency Department) was approached to participate in an STI study. Participation required an interview regarding symptoms and sexual history, a vaginal swab and urine sample for STI testing, and parental consent for those under age 18. Demographics, enrollment, and reasons for ineligibility or refusal were recorded.Results-Of 466 females approached, 240 (52%) met eligibility criteria, and 139 (58%) of those eligible refused enrollment. Reasons for refusal included: 32 (23%) lack of parental confidentiality or consent, 65 (47%) no reason, 23 (17%) time constraints and 19 (13%) other reasons. Parental barriers were only cited by those under age 18. Reasons for refusal did not differ by race. In unadjusted and adjusted analyses, enrollees were more likely to be Black and age ≥18 than non-enrollees. An interaction between age and race is shown in stratified logistic regression analyses: The association of age ≥18 with enrollment was highly significant for White/Other females (Odds Ratio 12.5, 95% confidence interval: 3.0-52.7) but not for Black females (Odds Ratio 1.5, 95% confidence interval: 0.77-3.0). Conclusions-Requiring parental consent appears to preclude participation in minimal risk STI research especially for younger non-black females.

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Section: Discussionmentioning

confidence: 99%

STI Research: Recruiting an Unbiased Sample

Reed¹,

Thistlethwaite²,

Huppert³

2007

Journal of Adolescent Health

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“…Given that homophobia, discrimination, and violence often affect HIV-positive LGBT adolescents and young adults, better outcomes are reported in health care settings where there are confidentiality and privacy policies that are discussed during enrollment and at subsequent clinic visits. 18,36,37 Standard forms for and policies on confidentiality as well as policies on privacy for youth are available and can be modified as state or local jurisdictions legally permit. 38 (b) HIV stigma should be addressed within a developmentally appropriate unit offering comprehensive medical services like a medical home, 16 with patients engaged in trusting relationships with health care providers and being kept well informed of the status of their illness.…”

Section: Youth-friendly Servicesmentioning

confidence: 99%

Psychosocial Support for Youth Living With HIV

Martinez¹,

Chakraborty²

2014

Pediatrics

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This clinical report provides guidance for the pediatrician in addressing the psychosocial needs of adolescents and young adults living with HIV, which can improve linkage to care and adherence to life-saving antiretroviral (ARV) therapy. Recent national case surveillance data for youth (defined here as adolescents and young adults 13 to 24 years of age) revealed that the burden of HIV/AIDS fell most heavily and disproportionately on African American youth, particularly males having sex with males. To effectively increase linkage to care and sustain adherence to therapy, interventions should address the immediate drivers of ARV compliance and also address factors that provide broader social and structural support for HIV-infected adolescents and young adults. Interventions should address psychosocial development, including lack of future orientation, inadequate educational attainment and limited health literacy, failure to focus on the long-term consequences of near-term risk behaviors, and coping ability. Associated challenges are closely linked to the structural environment. Individual case management is essential to linkage to and retention in care, ARV adherence, and management of associated comorbidities. Integrating these skills into pediatric and adolescent HIV practice in a medical home setting is critical, given the alarming increase in new HIV infections in youth in the United States.

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“…For these reasons, adolescents with HIV remain underserved and hidden . Special efforts must be made to both attract and retain adolescents in care to prevent excess morbidity and mortality (Futterman, 2004;Ginsburg et al, 2002;Johnson et al, 2003;Morrison-Beedy, Carey, Aronowitz, Mkandawire, & Dyne, 2002;Simkin et al, 2000;Stanford et al, 2003).…”

Section: Introductionmentioning

confidence: 99%

Physical and Sexual Abuse and Unstable Housing among Adolescents with HIV

Eastwood

Birnbaum

2007

AIDS Behav

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Stable housing is a necessary component of treatment of adolescents with HIV. This study examines the housing status at two points in time of a sample of 224 adolescents with HIV seen at an adolescent medicine clinic in New York City. It addresses whether unstable housing is associated with several forms of abuse, and what factors predict continued instability. 38.6% (n = 86) had a prior history of unstable housing, reduced to 12.9% at the time of program entry. Multivariate logistic regression models predicting current and prior unstable housing revealed two variables related to both outcomes: physical abuse and referral from youth/social services entities. Continued unstable housing was associated with all abuse variables and adolescent history of arrest. When adolescents in abusive situations come to the attention of programs for youth, they have a positive impact on transitioning most adolescents to safer households, potentially improving adolescents' accessing of health care services.

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Recruitment and Retention of Adolescent Participants in HIV Research: Findings From the REACH (Reaching for Excellence in Adolescent Care and Health) Project

Cited by 59 publications

References 22 publications

STI Research: Recruiting an Unbiased Sample

STI Research: Recruiting an Unbiased Sample

Psychosocial Support for Youth Living With HIV

Physical and Sexual Abuse and Unstable Housing among Adolescents with HIV

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