Browsing by Author "Ott, Mary A."

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    153. AYA Subspecialty Patient and Parent Views on COVID-19 Vaccination
    (Elsevier, 2022) Hardman, Sara; Jacob, Seethal A.; Coven, Scott L.; Rahim, Mahvish Q.; Miller, Meagan E.; Zimet, Gregory D.; Meagher, Carolyn G.; Ott, Mary A.; Pediatrics, School of Medicine
    Purpose: Adolescents/young adults (AYA) with hematologic and oncologic (heme-onc) conditions are important targets for vaccine outreach because they are at increased risk for complications from COVID-19. AYA patients may also need additional support, as they are transitioning from parent to independent vaccine decision-making. AYA with sickle cell disease (SCD) are of particular concern because a high proportion are African American and experience structural racism in addition to their illness. Our objective was to examine AYA and parent attitudes regarding the COVID-19 vaccine among heme-onc populations. Methods: As part of a larger IRB-approved study, we recruited vaccine decision-makers in pediatric SCD and oncology survivor clinics, including parents of adolescents under 18 years (n=35), AYA patients 18-21 years old (n=21), and parents of AYA patients 18-21 years old (n=14). After informed consent, participants completed a demographic survey and a semi-structured interview regarding their vaccine decision-making process. Example questions included “What do you see as the benefits of the COVID-19 vaccine?” and “What are your concerns about the COVID-19 vaccine?”. Saturation was reached. Interviews were audio recorded, transcribed, and analyzed using thematic analysis. Codes were developed from the literature and early interviews. Examples included “attitudes against vaccine,” “medical mistrust,” “hesitancy,” “vaccine side effects,” and “vaccine interactions with disease process.” Fisher exact statistical tests were performed to analyze quantitative data. Results: In SCD clinic, we recruited 31 index patients (mean age: 15.1±3.5 years; 30 African American and 1 Other or Mixed), yielding 11 AYA and 26 parent interviews. In survivor clinic, we recruited 26 index patients (mean age: 16.0±3.4 years; 20 White, 2 Hispanic or Latinx; 2 Other or Mixed, 1 African American, and 1 Asian), yielding 10 AYA and 23 parent interviews. Out of the total index patients, 8 had already received the vaccine, 13 were planning to receive it, 27 were considering it, and 9 had declined it. There was no clear relationship between patients’ diagnosis (SCD or cancer) and their vaccine decisions nor between the index patient’s age (under or over 18) and their vaccine decisions. A high proportion of participants saw benefits to vaccination, such as lowering personal risk, community benefits of preventing the spread of COVID-19, and a possible return to “normal.” However, many AYA and parent participants also had concerns toward the vaccine, including concerns about short-term side effects and the potential for unknown, long-term effects. Concerns were also voiced about how rapidly the vaccine was developed and misconceptions about the vaccine were common, namely the vaccine causing infertility or increasing one’s susceptibility to contracting COVID-19. Medical mistrust toward either the vaccine or providers was explicitly stated by several participants, the majority of whom were from minoritized groups. Conclusions: COVID-19 vaccines have the potential to protect medically and socially vulnerable AYA, however patient and parent concerns, misconceptions, and mistrust are still prevalent. These data provide insights into the design and implementation of vaccine counseling interviews for AYA subspecialty patients and families.
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    50 Years Ago in The Journal of Pediatrics: The Role of Marihuana in Patterns of Drug Abuse by Adolescents
    (Elsevier, 2019-02) Ferrin, Stephanie N.; Ott, Mary A.; Pediatrics, School of Medicine
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    A 4-Site Public Deliberation Project on the Acceptability of Youth Self-Consent in Biomedical HIV Prevention Trials: Assessment of Facilitator Fidelity to Key Principles
    (JMIR, 2025-02-13) Draucker, Claire Burke; Carrión, Andrés; Ott, Mary A.; Hicks, Ariel I.; Knopf, Amelia; School of Nursing
    Background: Public deliberation is an approach used to engage persons with diverse perspectives in discussions and decision-making about issues affecting the public that are controversial or value laden. Because experts have identified the need to evaluate facilitator performance, our research team developed a framework to assess the fidelity of facilitator remarks to key principles of public deliberation. Objective: This report describes how the framework was used to assess facilitator fidelity in a 4-site public deliberation project on the acceptability of minor self-consent in biomedical HIV prevention research. Methods: A total of 88 individuals participated in 4 deliberation sessions held in 4 cities throughout the United States. The sessions, facilitated by 18 team members, were recorded and transcribed verbatim. Facilitator remarks were highlighted, and predetermined coding rules were used to code the remarks to 1 of 6 principles of quality deliberations. A variety of display tables were used to organize the codes and calculate the number of facilitator remarks that were consistent or inconsistent with each principle during each session across all sites. A content analysis was conducted on the remarks to describe how facilitator remarks aligned or failed to align with each principle. Results: In total, 735 remarks were coded to one of the principles; 516 (70.2%) were coded as consistent with a principle, and 219 (29.8%) were coded as inconsistent. A total of 185 remarks were coded to the principle of equal participation (n=138, 74.6% as consistent; n=185, 25.4% as inconsistent), 158 were coded to expression of diverse opinions (n=110, 69.6% as consistent; n=48, 30.4% as inconsistent), 27 were coded to respect for others (n=27, 100% as consistent), 24 were coded to adoption of a societal perspective (n=11, 46% as consistent; n=13, 54% as inconsistent), 99 were coded to reasoned justification of ideas (n=81, 82% as consistent; n=18, 18% as inconsistent), and 242 were coded to compromise or movement toward consensus (n=149, 61.6% as consistent; n=93, 38.4% as inconsistent). Therefore, the counts provided affirmation that most of the facilitator remarks were aligned with the principles of deliberation, suggesting good facilitator fidelity. By considering how the remarks aligned or failed to align with the principles, areas where facilitator fidelity can be strengthened were identified. The results indicated that facilitators should focus more on encouraging quieter members to participate, refraining from expressing personal opinions, promoting the adoption of a societal perspective and reasoned justification of opinions, and inviting deliberants to articulate their areas of common ground. Conclusions: The results provide an example of how a framework for assessing facilitator fidelity was used in a 4-site deliberation project. The framework will be refined to better address issues related to balancing personal and public perspectives, managing plurality, and mitigating social inequalities.
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    A qualitative pilot study exploring the acceptability of a peer provider delivered substance use brief intervention from the perspective of youth in Kenya
    (Springer Nature, 2025-02-11) Jaguga, Florence; Aalsma, Matthew C.; Enane, Leslie A.; Turissini, Matthew; Kwobah, Edith Kamaru; Apondi, Edith; Barasa, Julius; Kosgei, Gilliane; Olando, Yvonne; Ott, Mary A.; Pediatrics, School of Medicine
    Background: Substance use disorders are prevalent among youth in sub-Saharan Africa (SSA), yet treatment resources are scarce. Peer provider delivered brief interventions (BIs) represent an affordable and potentially scalable strategy for addressing youth substance use disorders. The goal of this study is to assess the acceptability of a peer provider delivered substance use BI from the perspective of youth in Kenya. Methods: We conducted qualitative semi-structured interviews with youth participants (n = 25) to explore acceptability of a substance use BI. Youth were participants in a two-arm mixed-methods pilot randomized controlled trial (RCT) investigating the feasibility of a peer provider delivered single-session substance use BI for youth aged 15-24 years with moderate-risk substance use. The semi-structured interviews were conducted three months after the BI was delivered and were guided by the Theoretical Framework of Acceptability (TFA). Qualitative data were analyzed through thematic analysis. Results: We interviewed 25 of 38 participants in the BI arm, 18 males and 7 females; 15 were ages 18-24 years, and 10 ages 15-17 years. Affective attitude: Most youth reported that they enjoyed the session content and enjoyed interacting with the peer provider. Burden: Most youth felt that it was easy to understand the session and participate in it. Perceived effectiveness: Most of the youth perceived the intervention to be effective in helping them reduce substance use and improve their well-being. Ethicality: All youth perceived that the counselling session fit in with their goals and values. Intervention coherence: Most youth understood the overall goal of the intervention. They reported that the goal of the intervention was to help youth stop substance use, and to bring about behavior change. Opportunity costs: Some youth reported that they had to forgo other activities to attend the session, such as work, school, sports, gaming, visiting family, or house chores. Self-efficacy: Most youth felt confident about being able to cut down or stop using substances following the intervention. Conclusion and recommendations: Our findings indicate that the peer provider delivered single-session substance use BI was acceptable to youth. The youth recommended that follow-up sessions be provided to ensure sustained behavior change. This study supports the utility of the TFA in exploring acceptability of a substance use intervention from the perspective of young people.
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    Abstinence and abstinence-only education
    (Lippincott, Williams & Wilkins, 2007-10) Ott, Mary A.; Santelli, John S.; Pediatrics, School of Medicine
    PURPOSE OF REVIEW: To review recent literature on medical accuracy, program effectiveness, and ethical concerns related to abstinence-only policies for adolescent sexuality education. RECENT FINDINGS: The federal government invests over 175 million dollars annually in 'abstinence-only-until-marriage' programs. These programs are required to withhold information on contraception and condom use, except for information on failure rates. Abstinence-only curricula have been found to contain scientifically inaccurate information, distorting data on topics such as condom efficacy, and promote gender stereotypes. An independent evaluation of the federal program, several systematic reviews, and cohort data from population-based surveys find little evidence of efficacy and evidence of possible harm. In contrast, comprehensive sexuality education programs have been found to help teens delay initiation of intercourse and reduce sexual risk behaviors. Abstinence-only policies violate the human rights of adolescents because they withhold potentially life-saving information on HIV and other sexually transmitted infections. SUMMARY: Federal support of abstinence-only as an approach to adolescent sexuality education is of much concern due to medical inaccuracies, lack of effectiveness, and the withholding and distorting of health information.
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    Abstinence-Only-Until-Marriage: An Updated Review of U.S. Policies and Programs and Their Impact
    (Elsevier, 2017-09) Santelli, John S.; Kantor, Leslie M.; Grilo, Stephanie A.; Speizer, Ilene S.; Lindberg, Laura D.; Heitel, Jennifer; Schalet, Amy T.; Lyon, Maureen E.; Mason-Jones, Amanda J.; McGovern, Terry; Heck, Craig J.; Rogers, Jennifer; Ott, Mary A.; Pediatrics, School of Medicine
    Adolescence is marked by the emergence of human sexuality, sexual identity, and the initiation of intimate relations; within this context, abstinence from sexual intercourse can be a healthy choice. However, programs that promote abstinence-only-until-marriage (AOUM) or sexual risk avoidance are scientifically and ethically problematic and—as such—have been widely rejected by medical and public health professionals. Although abstinence is theoretically effective, in actual practice, intentions to abstain from sexual activity often fail. Given a rising age at first marriage around the world, a rapidly declining percentage of young people remain abstinent until marriage. Promotion of AOUM policies by the U.S. government has undermined sexuality education in the United States and in U.S. foreign aid programs; funding for AOUM continues in the United States. The weight of scientific evidence finds that AOUM programs are not effective in delaying initiation of sexual intercourse or changing other sexual risk behaviors. AOUM programs, as defined by U.S. federal funding requirements, inherently withhold information about human sexuality and may provide medically inaccurate and stigmatizing information. Thus, AOUM programs threaten fundamental human rights to health, information, and life. Young people need access to accurate and comprehensive sexual health information to protect their health and lives.
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    Adapting ethical guidelines for adolescent health research to street-connected children and youth in low- and middle-income countries: a case study from western Kenya
    (Springer (Biomed Central Ltd.), 2015-12-18) Embleton, L.; Ott, Mary A.; Wachira, J.; Naanyu, V.; Kamanda, A.; Makori, D.; Ayuku, D.; Braitstein, P.; Department of Epidemiology, Richard M. Fairbanks School of Public Health
    BACKGROUND: Street-connected children and youth (SCCY) in low- and middle-income countries (LMIC) have multiple vulnerabilities in relation to participation in research. These require additional considerations that are responsive to their needs and the social, cultural, and economic context, while upholding core ethical principles of respect for persons, beneficence, and justice. The objective of this paper is to describe processes and outcomes of adapting ethical guidelines for SCCY's specific vulnerabilities in LMIC. METHODS: As part of three interrelated research projects in western Kenya, we created procedures to address SCCY's vulnerabilities related to research participation within the local context. These consisted of identifying ethical considerations and solutions in relation to community engagement, equitable recruitment, informed consent, vulnerability to coercion, and responsibility to report. RESULTS: Substantial community engagement provided input on SCCY's participation in research, recruitment, and consent processes. We designed an assent process to support SCCY to make an informed decision regarding their participation in the research that respected their autonomy and their right to dissent, while safeguarding them in situations where their capacity to make an informed decision was diminished. To address issues related to coercion and access to care, we worked to reduce the unequal power dynamic through street outreach, and provided access to care regardless of research participation. CONCLUSIONS: Although a vulnerable population, the specific vulnerabilities of SCCY can to some extent be managed using innovative procedures. Engaging SCCY in ethical research is a matter of justice and will assist in reducing inequities and advancing their health and human dignity.
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    Adolescent and Young Adults’ Ability to Self-Screen for Contraindications to Contraception and the Role of Chronic Illness
    (Elsevier, 2021) Wilkinson, Tracey A.; Meredith, Ashley H.; Rafie, Sally; Katz, Amy J.; Vielott, Thomas L.; Meagher, Carolyn G.; Ott, Mary A.; Pediatrics, School of Medicine
    Purpose: Multiple states allow pharmacists to prescribe hormonal contraception but can have age restrictions. The study objective was to examine how age influences adolescents' and young adults' (AYAs) ability to self-report potential contraindications to hormonal contraception compared with physician reports (our "gold standard"). Methods: Between February 2017 and August 2018, girls aged 14-21 years and their physicians were recruited in outpatient adolescent primary and subspecialty care clinics. Screeners were completed separately for medical conditions that are potential contraindications to hormonal contraception as defined by the Centers for Disease Control Medical Eligibility Criteria. Overall, discordance was defined as differences between the patient's and provider's answers, and potential unsafe discordance was defined as AYAs underreporting of contraindications. Multivariable logistic regression was used to examine predictors of overall and unsafe discordance. Results: Of 394 AYA/physician pairs, 45% were from subspecialty clinics, 35% identified as African American, the mean age was 16.7 ± 1.9 years, and 38% were sexually active. Fifty percent of patients reported potential contraindications to hormonal contraception. There was only an 18% rate of unsafe discordance, with no statistical difference by age but a higher rate in subspecialty clinics (28% vs. 10%). No variables were predictive of higher rates of unsafe discordance in general or subspecialty clinics. Conclusions: Potential overall and unsafe discordance between AYAs' and physicians' reports of medical contraindications to combined hormonal contraception were not related to younger age and thus support expansion of pharmacy access to adolescents. Pediatric subspecialists need to proactively address hormonal contraceptive needs and safety as pharmacy access expands.
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    Adolescent decision making about participation in a hypothetical HIV vaccine trial
    (Elsevier, 2015-03-10) Alexander, Andreia B.; Ott, Mary A.; Lally, Michelle A.; Sniecinski, Kevin; Baker, Alyne; Zimet, Gregory D.; Department of Pediatrics, IU School of Medicine
    Purpose The purpose of this study was to examine the process of adolescent decision-making about participation in an HIV vaccine clinical trial, comparing it to adult models of informed consent with attention to developmental differences. Methods As part of a larger study of preventive misconception in adolescent HIV vaccine trials, we interviewed 33 male and female 16–19-year-olds who have sex with men. Participants underwent a simulated HIV vaccine trial consent process, and then completed a semistructured interview about their decision making process when deciding whether or not to enroll in and HIV vaccine trial. An ethnographic content analysis approach was utilized. Results Twelve concepts related to adolescents' decision-making about participation in an HIV vaccine trial were identified and mapped onto Appelbaum and Grisso's four components of decision making capacity including understanding of vaccines and how they work, the purpose of the study, trial procedures, and perceived trial risks and benefits, an appreciation of their own situation, the discussion and weighing of risks and benefits, discussing the need to consult with others about participation, motivations for participation, and their choice to participate. Conclusion The results of this study suggest that most adolescents at high risk for HIV demonstrate the key abilities needed to make meaningful decisions about HIV vaccine clinical trial participation.
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    Adolescent Sexual Behavior Research: Perspectives of Investigators, IRB Members, and IRB Staff about Risk Categorization and IRB Approval
    (The Hastings Center, 2017) McGregor, Kyle A.; Hensel, Devon J.; Waltz, Amy C.; Molnar, Elizabeth; Ott, Mary A.; Pediatrics, School of Medicine