Word Adjacency Graph Modeling: Separating Signal From Noise in Big Data

There is a need to develop methods to analyze Big Data to inform patient-centered interventions for better health outcomes. The purpose of this study was to develop and test a method to explore Big Data to describe salient health concerns of people with epilepsy. Specifically, we used Word Adjacency Graph modeling to explore a data set containing 1.9 billion anonymous text queries submitted to the ChaCha question and answer service to (a) detect clusters of epilepsy-related topics, and (b) visualize the range of epilepsy-related topics and their mutual proximity to uncover the breadth and depth of particular topics and groups of users. Applied to a large, complex data set, this method successfully identified clusters of epilepsy-related topics while allowing for separation of potentially non-relevant topics. The method can be used to identify patient-driven research questions from large social media data sets and results can inform the development of patient-centered interventions

Adolescent Self-Consent for Biomedical HIV Prevention Research: Implications for Institutional Review Board Approval and Implementation

Purpose The Adolescent Medicine Trials Network Protocol 113 (ATN113) is an open-label, multisite demonstration project and Phase II safety study of human immunodeficiency virus (HIV) preexposure prophylaxis with 15- to 17-year-old young men who have sex with men that requires adolescent consent for participation. The purpose of this study was to examine factors related to the process by which Institutional Review Boards (IRBs) and researchers made decisions regarding whether to approve and implement ATN113 so as to inform future biomedical HIV prevention research with high-risk adolescent populations. Methods Participants included 17 researchers at 13 sites in 12 states considering ATN113 implementation. Qualitative descriptive methods were used. Data sources included interviews and documents generated during the initiation process. Results A common process for initiating ATN113 emerged, and informants described how they identified and addressed practical, ethical, and legal challenges that arose. Informants described the process as responding to the protocol, preparing for IRB submission, abstaining from or proceeding with submission, responding to IRB concerns, and reacting to the outcomes. A complex array of factors impacting approval and implementation were identified, and ATN113 was ultimately implemented in seven of 13 sites. Informants also reflected on lessons learned that may help inform future biomedical HIV prevention research with high-risk adolescent populations. Conclusions The results illustrate factors for consideration in determining whether to implement such trials, demonstrate that such protocols have the potential to be approved, and highlight a need for clearer standards regarding biomedical HIV prevention research with high-risk adolescent populations

By Default: How Mothers in Different-Sex Dual-Earner Couples Account for Inequalities in Pandemic Parenting

Mothers did a disproportionate share of the child care during the COVID-19 pandemic—an arrangement that negatively impacted their careers, relationships, and well-being. How did mothers account for these unequal roles? Through interviews and surveys with 55 mothers (and 14 fathers) in different-sex, prepandemic dual-earner couples, we found that mothers (and fathers) justified unequal parenting arrangements based on gendered structural and cultural conditions that made mothers’ disproportionate labor seem “practical” and “natural.” These justifications allowed couples to rely on mothers by default rather than through active negotiation. As a result, many mothers did not feel entitled to seek support with child care from fathers or nonparental caregivers and experienced guilt if they did so. These findings help explain why many mothers have not reentered the workforce, why fathers’ involvement at home waned as the pandemic progressed, and why the pandemic led to growing preferences for inegalitarian divisions of domestic and paid labor

Minors' and Young Adults' Experiences of the Research Consent Process in a Phase II Safety Study of Pre-exposure Prophylaxis for HIV

PURPOSE: There is a persistent HIV epidemic among sexual and gender minority adolescents in the U.S. Oral pre-exposure prophylaxis (PrEP) is an efficacious prevention strategy, but not yet approved for minors. Minors' access to biomedical HIV prevention technologies is impeded by the ethical and legal complexities of consent to research participation. We explore autonomous consent and study experiences among minor and adult participants in Project PrEPare, a Phase II safety study of PrEP for HIV prevention. METHODS: Data for this mixed-methods descriptive study were collected via self-administered web-survey and in-depth telephone interviews in early 2016. Eligible participants were previously enrolled in Project PrEPare. We attempted to contact 191 participants; 74 were reached and expressed interest in participating and 58 enrolled. RESULTS: Participants nearly universally felt well informed, understood the study, and freely volunteered with the clear understanding they could withdraw any time. All felt supported by study staff, but a small minority wished for more support during enrollment. Minors were more likely than adults to indicate a wish for more support in decision-making, and adults expressed higher satisfaction with their decision compared to minors. There was no association between elements of consent and Project PrEPare study outcomes. CONCLUSIONS: Participants had an overwhelmingly positive experience in a Phase II safety study of PrEP for HIV prevention. Some minors wished for more support during the decision-making process, but none consulted their parents about the decision. Our results support the inclusion of decisional supports in consent processes for adolescents, while also protecting their privacy

Sexual learning among East African adolescents in the context of generalized HIV epidemics: A systematic qualitative meta-synthesis

Background AIDS-related illness is the leading cause of mortality for adolescents in sub-Saharan Africa. Together, Kenya, Tanzania, and Uganda account for 21% of HIV-infected adolescents in sub-Saharan Africa. The United Nations framework for addressing the epidemic among adolescents calls for comprehensive sexual and reproductive health education. These HIV prevention efforts could be informed by a synthesis of existing research about the formal and informal sexual education of adolescents in countries experiencing generalized epidemics. The purpose of this study was to describe the process of sexual learning among East African adolescents living in the context of generalized HIV epidemics. Methods Qualitative metasynthesis, a systematic procedure for integrating the results of multiple qualitative studies addressing a similar phenomenon, was used. Thirty-two research reports met study inclusion criteria. The reports were assessed in a four-step analytic process: appraisal, classification of findings, synthesis of findings, and construction of a framework depicting the process of sexual learning in this population. Results The framework includes three phases of sexual learning: 1) being primed for sex, 2) making sense of sex, and 3) having sexual experiences. Adolescents were primed for sex through gender norms, cultural practices, and economic structures as well as through conversations and formal instruction. They made sense of sex by acquiring information about sexual intercourse, reproduction and pregnancy, sexually transmitted infections, and relationships and by developing a variety of beliefs and attitudes about these topics. Some adolescents described having sexual experiences that met wants or needs, but many experienced sex that was coerced or violent. Whether sex was wanted, coerced, or violent, adolescents experienced worry about sexually transmitted infections or premarital pregnancy. Conclusions The three phases of sexual learning interact to shape adolescents’ sexual lives and their risk for HIV infection. This framework will contribute to the development of sexual education programs that address HIV risk within the broader context of sexual learning

Measuring research mistrust in adolescents and adults: Validity and reliability of an adapted version of the Group-Based Medical Mistrust Scale

Mistrust of health care providers among persons of color is a significant barrier to engaging them in research studies. Underrepresentation of persons of color is particularly problematic when the health problem under study disproportionately affects minoritized communities. The purpose of this study was to test the validity and reliability of an abbreviated and adapted version of the Group Based Medical Mistrust Scale. The GBMMS is a 12-item scale with three subscales that assess suspicion, experiences of discrimination, and lack of support in the health care setting. To adapt for use in the research setting, we shortened the scale to six items, and replaced "health care workers" and "health care" with "medical researchers" and "medical research," respectively. Using panelists from a market research firm, we recruited and enrolled a racially and ethnically diverse sample of American adults (N = 365) and adolescents aged 14-17 (N = 250). We administered the adapted scale in a web-based survey. We used Cronbach's alpha to evaluate measure internal reliability of the scale and external factor analysis to evaluate the relationships between the revised scale items. Five of the six items loaded onto a single factor, with (α = 0.917) for adolescents and (α = 0.912) for adults. Mean scores for each item ranged from 2.5-2.9, and the mean summary score (range 6-25) was 13.3 for adults and 13.1 for adolescents. Among adults, Black respondents had significantly higher mean summary scores compared to whites and those in other racia/ethnic groups (p<0.001). There was a trend toward significance for Black adolescents as compared to white respondents and those in other racial/ethnic groups (p = 0.09). This five-item modified version of the GBMMS is reliable and valid for measuring research mistrust with American adults and adolescents of diverse racial and ethnic identities

Finding the Patient’s Voice Using Big Data: Analysis of Users’ Health-Related Concerns in the ChaCha Question-and-Answer Service (2009–2012)

Background: The development of effective health care and public health interventions requires a comprehensive understanding of the perceptions, concerns, and stated needs of health care consumers and the public at large. Big datasets from social media and question-and-answer services provide insight into the public&#8217;s health concerns and priorities without the financial, temporal, and spatial encumbrances of more traditional community-engagement methods and may prove a useful starting point for public-engagement health research (infodemiology). Objective: The objective of our study was to describe user characteristics and health-related queries of the ChaCha question-and-answer platform, and discuss how these data may be used to better understand the perceptions, concerns, and stated needs of health care consumers and the public at large. Methods: We conducted a retrospective automated textual analysis of anonymous user-generated queries submitted to ChaCha between January 2009 and November 2012. A total of 2.004 billion queries were read, of which 3.50% (70,083,796/2,004,243,249) were missing 1 or more data fields, leaving 1.934 billion complete lines of data for these analyses. Results: Males and females submitted roughly equal numbers of health queries, but content differed by sex. Questions from females predominantly focused on pregnancy, menstruation, and vaginal health. Questions from males predominantly focused on body image, drug use, and sexuality. Adolescents aged 12&#8211;19 years submitted more queries than any other age group. Their queries were largely centered on sexual and reproductive health, and pregnancy in particular. Conclusions: The private nature of the ChaCha service provided a perfect environment for maximum frankness among users, especially among adolescents posing sensitive health questions. Adolescents&#8217; sexual health queries reveal knowledge gaps with serious, lifelong consequences. The nature of questions to the service provides opportunities for rapid understanding of health concerns and may lead to development of more effective tailored interventions. [J Med Internet Res 2016;18(3):e44

Assessment of HIV Prevention Needs of West Kenyan Adolescents: Implications for Intervention Adaptation

Thesis (Ph.D.)--University of Washington, 2013University of Washington Abstract Assessment of HIV Prevention Needs of West Kenyan Adolescents: Implications for Intervention Adaptation Amelia S. Knopf Chair of the Supervisory Committee: Professor Elaine Adams Thompson Department of Psychosocial and Community Health, School of Nursing Purpose: The purpose of this dissertation study was to examine early sexual partnerships of west Kenyan adolescents and their sociocultural context in order to shape an HIV prevention program to meet their needs. The impetus for this dissertation research came from a previous study conducted with Kenyan adults in North Nyamware, a village in Nyanza Province, which is an epicenter of the global HIV epidemic. This dissertation describes three studies (Chapters 2 through 4), which were conducted to address the following goals: 1. Describe the characteristics of rural west Kenyan adolescents' sexual debut and the patterns of sexual partnerships in adolescence and young adulthood. 2. Examine the prevalence of concurrent, or temporally overlapping, sexual partnerships in west Kenyan adolescents. 3. Assess the feasibility and acceptability of the first component of the KYN concurrency reduction intervention for use with adolescents aged 13 to 17. Methods: In the first study (Chapter 2) data from two household surveys of Kenyan adolescents and adults were acquired from the United States Centers for Disease Control and Prevention (CDC). The Asembo Baseline Cross-Sectional Study (Asembo BCS) and Gem Baseline Cross-Sectional Study (Gem BCS) were used to describe the features of sexual debut and to cluster respondents by features of their sexual debut. In the second study (Chapter 3) the Asembo BCS and Gem BCS data were examined to estimate the prevalence of concurrent, or temporally overlapping, sexual partnerships among rural Nyanza adolescents aged 13 to 19. In the third study, (Chapter 4) qualitative data were collected from adult and adolescent stakeholders to assess the feasibility and acceptability of a concurrency reduction intervention called Know Your Network (KYN). The data were analyzed using a thematic approach to content analysis, and the results used to inform the adaptation of KYN for use with adolescents aged 13 to 17. Results: The results from study one indicate 20% of adolescents reached sexual debut before age 13, and the median debut age for males and females was relatively young (14 years, 15 years, respectively), underscoring the importance of targeting young adolescents for pre-risk HIV prevention efforts. Features of sexual debut can be used to cluster groups of respondents into distinct groups with different typologies of debut. Study two results estimate the point prevalence of concurrency on the date of interview was 2.2% among the entire sample of adolescents, and 4.4% for sexually experienced adolescents. Study three results reveal rural Nyanza adults and adolescents are concerned about HIV among youth and find current resources insufficient for addressing their concerns. KYN elements were difficult for 13 to 14 year olds to understand but were feasible and acceptable for use with 15 to 17 year olds. Conclusions: This study has several important implications for HIV prevention. First, efforts to prevention HIV infection in rural Nyanza must target very young adolescents for effective primary prevention. Second, multiple features of sexual debut can be used to more fully describe a complex, multidimensional experience. Third, adults expressed interest in getting HIV prevention messages to youth, and youth expressed interest in hearing such messages, but both agreed the current informational resources are inadequate. Finally, the KYN intervention offers information older youth find interesting and relevant to their lives and the lives of other youth. Taken together, the studies in this dissertation can be used to inform HIV prevention efforts for Nyanza youth, whose healthy transition to adulthood is critical to Kenya's success in the battle against HIV and AIDS