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The Healthy Oregon Project (HOP) is a statewide effort that aims to build a large research repository and influence the health of Oregonians through providing no-cost genetic screening to participants for a next-generation sequencing 32-gene panel comprising genes related to inherited cancers and familial hypercholesterolemia. This type of unbiased population screening can detect at-risk individuals who may otherwise be missed by conventional medical approaches. However, challenges exist for this type of high-throughput testing in an academic setting, including developing a low-cost high-efficiency test and scaling up the clinical laboratory for processing large numbers of samples. Modifications to our academic clinical laboratory including efficient test design, robotics, and a streamlined analysis approach increased our ability to test more than 1,000 samples per month for HOP using only one dedicated HOP laboratory technologist. Additionally, enrollment using a HIPAA-compliant smartphone app and sample collection using mouthwash increased efficiency and reduced cost. Here, we present our experience three years into HOP and discuss the lessons learned, including our successes, challenges, opportunities, and future directions, as well as the genetic screening results for the first 13,670 participants tested. Overall, we have identified 730 pathogenic/likely pathogenic variants in 710 participants in 24 of the 32 genes on the panel. The carrier rate for pathogenic/likely pathogenic variants in the inherited cancer genes on the panel for an unselected population was 5.0% and for familial hypercholesterolemia was 0.3%. Our laboratory experience described here may provide a useful model for population screening projects in other states.
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Hiperlipoproteinemia Tipo II , Neoplasias , Humanos , Oregon/epidemiología , Detección Precoz del Cáncer , Pruebas Genéticas , Hiperlipoproteinemia Tipo II/diagnóstico , Hiperlipoproteinemia Tipo II/epidemiología , Hiperlipoproteinemia Tipo II/genética , Neoplasias/diagnóstico , Neoplasias/epidemiología , Neoplasias/genéticaRESUMEN
The potential for using widespread genetic testing to inform health care has become a viable option, particularly for heritable cancers. Yet, little is known about how to effectively communicate the benefits and risks of both personal genetic testing and participation in biorepositories that aid scientific advancements. Nationwide efforts are engaging communities in large genetic studies to better estimate the population-wide prevalence of heritable cancers but have been met with hesitance or declination to participate in some communities. To successfully engage an Oregon population in longitudinal research that includes predictive genetic testing for pathogenic or likely pathogenic variants associated with an increased risk for cancer, researchers conducted 35 focus groups (two of which were held in Spanish) in 24 of Oregon's 36 counties to better understand knowledge and attitudes related to genetic testing and willingness to participate in longitudinal genetic research. A total of 203 adults (mean = 45.6 years; range 18-88), representing a range of education levels and prior knowledge of genetic research, participated in the focus groups. The majority (85%) of participants reported personal or family diagnoses of cancer (e.g., self, family, friends). A majority (87%) also reported a strong interest in cancer genetic testing and receiving genetic information about themselves. Nearly all focus groups (94%, 33 of 35 sites) included participant discussion citing their families (e.g., children, close relatives, and extended family members) as key motivators for participation in genetic research. For example, participants reported interest in increasing personal knowledge about their own and their families' cancer risks in order to respond proactively, if a pathogenic variant was found. While most focus groups (94%, 33 of 35 sites) included participant discussion describing barriers to predictive genetic, testing such as concerns about outcomes, the desire to learn about health risks in oneself mitigated or outweighed those fears for many participants. Other commonly reported concerns were related to potential mistrust of insurance companies, researchers, or institutions, or lack of knowledge about genetics, genetic testing, or genetic research. Participants, particularly in rural areas, highlighted critical factors for research recruitment, such as trust, personal interaction, public education about genetic research, and clear communication about study goals and processes. Our statewide findings reflect that public interest in predictive cancer genetic testing and cancer genetic research can surpass lack of knowledge of the complex topics, particularly when benefits for self and family are emphasized and when study considerations are well articulated.
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Pruebas Genéticas/métodos , Neoplasias/diagnóstico , Adulto , Niño , Familia , Femenino , Grupos Focales , Predisposición Genética a la Enfermedad , Humanos , Masculino , Persona de Mediana Edad , Motivación , Neoplasias/genética , OregonRESUMEN
An important part in the effort to prevent, treat, and cure breast cancer is research done with healthy breast tissue. The Susan G. Komen for the Cure Tissue Bank at Indiana University Simon Cancer Center (KTB) encourages women to donate a small amount of healthy breast tissue and then provides that tissue to researchers studying breast cancer. Although KTB has a large donor base, the volume of tissue samples from Asian women is low despite prior marketing efforts to encourage donation among this population. This study builds on prior work promoting breast cancer screenings among Asian women by applying constructs from the Health Belief Model (HBM) and the Integrated Behavioral Model (IBM) to investigate why Asian-American women are less inclined to donate their healthy breast tissue than non-Asian women and how this population may be motivated to donate in the future. A national online survey (N = 1,317) found Asian women had significantly lower perceived severity, some lower perceived benefits, and higher perceived barriers to tissue donation than non-Asian women under HBM and significantly lower injunctive norms supporting breast tissue donation, lower perceived behavioral control, and lower intentions to donate under IBM. This study also compares and discusses similarities and differences among East, Southeast, and South Asian women on these same constructs.
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Asiático/psicología , Neoplasias de la Mama/prevención & control , Mama/fisiología , Intención , Obtención de Tejidos y Órganos , Adulto , Neoplasias de la Mama/diagnóstico , Detección Precoz del Cáncer , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Internet , Persona de Mediana Edad , Encuestas y Cuestionarios , Bancos de TejidosRESUMEN
Domestic violence is a worldwide epidemic. This study examines the effects of narrative exemplars and a celebrity spokesperson in anti-domestic violence ads on Lebanese college students' attitudes and beliefs towards domestic violence and whether these effects are impacted by personal experience. The practical significance is derived from the high prevalence of domestic violence internationally, making it important to find ways to effectively use media to address this health-related issue that has huge consequences for the individual and society. This study adds to the theoretical understanding of narrative persuasion and media effects. Results indicated that narrative exemplars in anti-domestic violence ads promoting bystander awareness and intervention were more beneficial for people without relevant experience compared to people who know someone affected by domestic violence. Anti-domestic violence ads without narrative exemplars, but that also featured an emotional self-efficacy appeal targeting bystanders, were more effective for participants who know someone who had experienced domestic violence compared to participants without relevant experience. The presence of a celebrity spokesperson elicited more positive attitudes about the ad than a noncelebrity, but failed to directly affect relevant anti-domestic violence attitudes or beliefs. These results highlight the significance of formative audience research in health communication message design.
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Violencia Doméstica/prevención & control , Personajes , Comunicación en Salud/métodos , Narración , Avisos de Utilidad Pública como Asunto , Adolescente , Adulto , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Líbano , Masculino , Autoeficacia , Estudiantes/psicología , Estudiantes/estadística & datos numéricos , Universidades , Adulto JovenRESUMEN
Parents of children with eating disorders experience extreme emotional burden because of the intensity and duration of the recovery process. While parental involvement in a child's eating disorder treatment improves outcomes, parents often neglect their own well-being, which can impede their child's recovery. This study extends the research on caregivers and on health theory in practice by conducting formative research to develop a theory-based communication intervention encouraging parents to engage in adaptive coping and self-care behaviors. The Transactional Model of Stress and Coping and the Transtheoretical Model guided qualitative assessments of the determinants of parents' coping behaviors. Three focus groups with 19 parents of children with eating disorders and 19 semi-structured interviews with experts specializing in eating disorders were conducted. Findings indicate that parents and experts see parents' need for permission to take time for themselves as the main barrier to self-care. The main motivator for parents to engage in coping behaviors is awareness of a connection between self-care and their child's health outcomes. Participant evaluation of six potential messages for main themes and effectiveness revealed that theory-based elements, such as certain processes of change within the Transtheoretical Model, were important to changing health behavior.
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Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Comunicación en Salud/métodos , Promoción de la Salud/métodos , Relaciones Padres-Hijo , Padres/psicología , Adaptación Psicológica , Niño , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Femenino , Grupos Focales , Humanos , Masculino , Teoría Psicológica , Investigación Cualitativa , Autocuidado/psicología , Estrés PsicológicoRESUMEN
Rates of melanoma-the deadliest form of skin cancer-have increased. Early detection can save lives, and patients have a critical role to play in checking their skin. We aim to identify health communication messages that best educate the public and increase intentions toward skin checks. After viewing messages intended to increase melanoma knowledge, participants correctly identified a greater proportion (74.6 vs 70.4%) of moles (mean number = 17.9, 95% confidence interval [CI] = 17.5-18.3 vs 16.9, 95% CI = 16.6-17.3; P < .001, partial eta-squared = 0.03) and had knowledge of more melanoma warning signs (mean number = 5.8, 95% CI = 5.7-5.8 vs 5.6, 95% CI = 5.5-5.7, P = .01, partial eta-squared = 0.02). After viewing messages intended to increase self-confidence in checking their skin accurately, they were also more likely to report greater intentions to do a skin check on a scale of 1-5 (mean number = 3.8, 95% CI = 3.7-3.9 vs 3.6, 95% CI = 3.4-3.7, P = .005, partial eta-squared = 0.02). Online melanoma messages aimed at increasing both melanoma knowledge and skin-check confidence may be most effective in improving the accuracy of skin self-examinations and intentions to do them.
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Background: Cancer health research relies on large-scale cohorts to derive generalizable results for different populations. While traditional epidemiological cohorts often use costly random sampling or self-motivated, preselected groups, a shift toward health system-based cohorts has emerged. However, such cohorts depend on participants remaining within a single system. Recent consumer engagement models using smartphone-based communication, driving projects, and social media have begun to upend these paradigms. Methods: We initiated the Healthy Oregon Project (HOP) to support basic and clinical cancer research. HOP study employs a novel, cost-effective remote recruitment approach to effectively establish a large-scale cohort for population-based studies. The recruitment leverages the unique email account, the HOP website, and social media platforms to direct smartphone users to the study app, which facilitates saliva sample collection and survey administration. Monthly newsletters further facilitate engagement and outreach to broader communities. Results: By the end of 2022, the HOP has enrolled approximately 35,000 participants aged 18-100 years (median = 44.2 years), comprising more than 1% of the Oregon adult population. Among those who have app access, â¼87% provided consent to genetic screening. The HOP monthly email newsletters have an average open rate of 38%. Efforts continue to be made to improve survey response rates. Conclusion: This study underscores the efficacy of remote recruitment approaches in establishing large-scale cohorts for population-based cancer studies. The implementation of the study facilitates the collection of extensive survey and biological data into a repository that can be broadly shared and supports collaborative clinical and translational research.
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BACKGROUND: Licensed nonmedical, skin-aware professionals (e.g., hairdressers, massage therapists, etc.) have the potential to identify skin cancer, but baseline knowledge may not be sufficient to accomplish this goal. Following educational intervention, self-efficacy is one of the best surrogate metrics for behavior change. Curricula that increase knowledge and confidence levels can improve screening behaviors, but few have been tested for efficacy in this population AIMS: We assessed whether an online curriculum could reliably improve skin screening knowledge, attitudes, and behaviors of nonmedical professionals PATIENTS/METHODS: Skin-aware professionals were recruited through the Oregon Health Authority and IMPACT Melanoma TM. Participants completed a pre-survey, online training module, post-survey, and one-year follow-up survey. We evaluated participants' indicated levels of concern for suspicious and nonsuspicious lesions relative to "gold standard" physician ratings. We also assessed confidence and self-reported behavior change regarding talking to clients about skin cancer and recommending they see a provider to evaluate suspicious lesions RESULTS: The pre-survey was completed by 9872 skin-aware professionals; 5434 completed the post-survey, and 162 completed the one-year follow-up survey. Participants showed a significant improvement in ability to indicate the correct level of concern for all lesion types in concordance with "gold standard" physician ratings (p < 0.001). Participants reported increased comfort levels in discussing health-related topics with their clients posttraining CONCLUSIONS: Our training module effectively increased skin-aware professionals' knowledge, confidence, and concern for malignant lesions. Skin-aware professionals may serve as a valuable extension of the skin self-exam, but additional studies are needed to evaluate the impact of these curricula long-term, including potential downstream consequences.
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Vaccination against the types of human papillomavirus (HPV) that cause about 70% of cervical cancers is approved for use in girls and women between 9 and 26 years of age and recommended routinely in 11-12-year-old girls. This article reports on the systematic theory-based formative research conducted to develop HPV vaccine messages for a campaign targeting racially diverse mothers of nonvaccinated 11-12-year-old girls in rural Southeastern United States. A consortium of 13 county health departments concerned about high rates of cervical cancer in their region relative to state and national averages initiated the campaign. The research examined behavioral determinants for vaccination decisions as well as mothers' reactions to message frames and emotional appeals. On the basis of focus groups and intercept interviews (n = 79), the authors demonstrated how preproduction message research and production message testing were used to develop messages that would motivate mothers of preteen girls. Core emotional truths that emerged were a mother's instinct to protect her daughter from harm and to embrace aspirations for her daughter's future. Mothers also reacted more positively to text about preventing cervical cancer than about preventing HPV, a sexually transmitted disease. Mothers preferred message concepts with photos of minorities and Caucasian mothers and daughters.
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Programas de Inmunización/organización & administración , Madres/psicología , Vacunas contra Papillomavirus/administración & dosificación , Neoplasias del Cuello Uterino/etnología , Vacunación/estadística & datos numéricos , Adolescente , Niño , Femenino , Promoción de la Salud/métodos , Humanos , Programas de Inmunización/métodos , Relaciones Madre-Hijo/etnología , Madres/estadística & datos numéricos , Fotograbar , Proyectos Piloto , Investigación Cualitativa , Servicios de Salud Rural/estadística & datos numéricos , Sudeste de Estados Unidos , Neoplasias del Cuello Uterino/prevención & controlRESUMEN
BACKGROUND: Cervical cancer incidence in the United States may be greatly reduced through widespread human papillomavirus (HPV) vaccination. We estimated the statewide level of HPV vaccine initiation among adolescent girls in North Carolina and identified correlates of vaccine initiation. METHODS: We used data from 617 parents of adolescent females from North Carolina who completed the population-based 2008 Child Health Assessment and Monitoring Program survey. Analyses used weighted multivariate logistic regression. RESULTS: Overall, 31.3% of parents reported their daughters had received at least 1 dose of HPV vaccine. Vaccine initiation was higher among daughters aged 13 to 15 years (odds ratio [OR] = 2.03, 95% CI, 1.12-3.67) or 16 to 17 years (OR = 3.21, 95% CI, 1.76-5.86) compared with those 10 to 12 years old. Additional correlates of HPV vaccine initiation included the daughter having a preventive check-up in the last 12 months (OR = 5.09, 95% CI, 2.43-10.67), having received meningococcal vaccine (OR = 2.50, 95% CI, 1.55-4.01), or being from an urban area (OR = 1.81, 95% CI, 1.02-3.21). Among parents of unvaccinated daughters, intent to vaccinate in the next year was higher among those with daughters aged 13 to 17 years. Parents of unvaccinated non-Hispanic white daughters reported lower levels of intent to vaccinate within the next year compared with parents of unvaccinated daughters of other races. CONCLUSIONS: HPV vaccine initiation in North Carolina is comparable with other US areas. Potential strategies for increasing HPV vaccination levels include reducing missed opportunities for HPV vaccination at preventive check-ups and increasing concomitant administration of HPV vaccine with other adolescent vaccines.
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Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus/administración & dosificación , Neoplasias del Cuello Uterino/prevención & control , Vacunación/estadística & datos numéricos , Adolescente , Adulto , Actitud Frente a la Salud , Niño , Femenino , Encuestas Epidemiológicas , Humanos , Intención , North Carolina , PadresRESUMEN
OBJECTIVE: To test the effectiveness of a college student-driven sexual consent education campaign to improve college students' sexual consent understanding. PARTICIPANTS: Undergraduate students (N = 992) at a large, public Midwestern university between March and December 2015. METHODS: Three online survey questionnaires assessing relevant outcome measures were distributed to the university's undergraduate student population before, during, and after the campaign's implementation over two consecutive academic semesters. RESULTS: Exposure to the campaign and the sexual consent understanding of the student population improved over time. College men and members of university-affiliated social sororities or fraternities resulted in greater improvement than their respective counterparts (i.e., college women, nonmembers). CONCLUSIONS: Sexual consent education campaigns for college students that are student-driven and address relevant sociocultural factors while authentically interacting with students can improve students' sexual consent understanding. These type of campaigns also have the opportunity to reach historically hard-to-reach audiences, such as college men.
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Comunicación , Violencia de Pareja/prevención & control , Educación Sexual/organización & administración , Delitos Sexuales/prevención & control , Conducta Sexual/psicología , Estudiantes/psicología , Adulto , Femenino , Humanos , Relaciones Interpersonales , Masculino , Medio Oeste de Estados Unidos , Conducta Sexual/estadística & datos numéricos , Estudiantes/estadística & datos numéricos , Encuestas y Cuestionarios , Universidades/estadística & datos numéricos , Adulto JovenRESUMEN
PURPOSE: A greater understanding of how college men's gendered beliefs and communication styles relate to their sexual consent attitudes and intentions is essential within the shifting context of negative to affirmative consent policies on college campuses. The results of this study can be used to help design more effective sexual consent interventions. METHODS: Three hundred seventy undergraduate college men completed cross-sectional online surveys. Hierarchical multiple regression examined how hypermasculinity, token resistance, rape myth acceptance, and sexual communication assertiveness were associated with consent-related attitudes, intentions, and interpretations. RESULTS: Bivariate correlations among all variables were significant. In multivariate analyses, sexual communication assertiveness was positively associated with all consent outcomes, and token resistance and rape myth acceptance were negatively associated with some. Hypermasculinity was not a significant factor. CONCLUSIONS: Programs seeking to improve sexual consent communication among college men should reduce destructive beliefs and encourage sexually assertive communication.
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Agresión/psicología , Asertividad , Comunicación , Masculinidad , Violación/psicología , Estudiantes/estadística & datos numéricos , Adulto , Estudios Transversales , Humanos , Internet , Masculino , Conducta Sexual , Encuestas y Cuestionarios , UniversidadesRESUMEN
This study describes the formative research, execution, and evaluation of a social media health intervention to improve adolescents' knowledge about and vaccination against human papillomavirus (HPV). Based on the results from formative focus groups with adolescents (N = 38) to determine intervention feasibility, parameters, and message preferences, we developed and conducted a pretest/posttest evaluation of a 3-month social media health intervention for adolescents who had not completed the HPV vaccine series (N = 108). Results revealed that adolescents who fully engaged with the intervention improved in their knowledge compared with a control group, and many were also likely to have interpersonal discussions with others about what they learned. Adolescents are generally interested in receiving information about HPV and the vaccine, along with other relevant health information, through social media channels if messages are considered interesting, their privacy is protected, and the source is credible.
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Daniel Tiger's Neighborhood is a children's television show incorporating many elements of video modeling, an intervention that can teach skills to children with autism spectrum disorders (ASD). This study evaluated the impact of watching Daniel Tiger's Neighborhood episodes on the accurate performance of trying new foods and stopping play politely with two five-year-old children with ASD. Both children showed improved performance of skills only following exposure to episodes of Daniel Tiger's Neighborhood, suggesting that watching episodes can help children with ASD learn specific skills.
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CONTEXT: Human papillomavirus (HPV) vaccine, licensed for use in 9--26-year-olds, is most effective when given before sexual activity begins. HPV causes genital warts, is associated with several cancers and disproportionately affects racial and ethnic minorities. Parents are typically unaware of male HPV vaccine; messages that might motivate them to get their preteenage sons vaccinated are unexplored. METHODS: Messages promoting vaccination of preteenage boys were designed and tested in 2009 and 2010. Five focus groups were conducted with 29 black parents of 11-12-year-old boys, recruited through three churches and a middle school in North Carolina, and a racially diverse sample of 100 parents of 9-13-year-old boys in a university-based adolescent health clinic was interviewed. A constant comparison method was used to code transcripts and interpret themes. Chi-square and t tests or analyses of variance were used to assess differences in quantitative data. RESULTS: Focus group parents knew little about HPV in males. Although concerned about safety and cost, parents supported vaccination for their sons. They wanted to see racial diversity and both parents in motivational materials. In interviews, 89% of parents reported never having heard of male HPV vaccine. The largest proportion said that a message stressing the prevalence and possible consequences of HPV infection was the most motivating (32%); the design favored by the largest proportion (43%) showed two parents. CONCLUSIONS: Messages that may most motivate parents to get preteenage boys vaccinated against HPV focus on infection risk and include images of parents with their sons.
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Comunicación en Salud , Conocimientos, Actitudes y Práctica en Salud , Motivación , Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus , Padres/psicología , Vacunación/psicología , Adolescente , Adulto , Análisis de Varianza , Distribución de Chi-Cuadrado , Niño , Grupos Focales , Humanos , Entrevistas como Asunto , Masculino , Vacunas contra Papillomavirus/efectos adversosRESUMEN
Routine vaccination against human papillomavirus (HPV), the main cause of cervical cancer, is recommended for 11-12 year old girls, yet vaccine uptake is low. This study evaluates a social marketing campaign initiated by 13 North Carolina counties to raise awareness among parents and reduce barriers to accessing the vaccine in a primarily rural area. The 3-month campaign targeted mothers of girls ages 11-12 and healthcare practices serving pre-teen girls in four counties. Principles of social marketing were: product (recommended vaccine against HPV), price (cost, perception of safety and efficacy, and access), promotion (posters, brochures, website, news releases, doctor's recommendation), and place (doctors' offices, retail outlets). We analyzed (1) website traffic, hotline calls, and media placement; (2) cross-sectional surveys of mothers and providers; and (3) HPV immunization rates in intervention versus non-intervention counties. Of respondent mothers (n=225), 82% heard or saw campaign messages or materials. Of respondent providers (n=35), 94% used campaign brochures regularly or occasionally in conversations with parents. HPV vaccination rates within six months of campaign launch were 2% higher for 9-13 year old girls in two of the four intervention counties compared to 96 non-intervention counties. This evaluation supports campaign use in other primarily rural and underserved areas.
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PURPOSE: To examine correlates of human papillomavirus (HPV) vaccine awareness and information sources in a state requiring schools to inform parents about HPV vaccine. METHODS: Telephone survey of a North Carolina population-based sample of 696 parents of females aged 10-17 years about HPV vaccine awareness and information sources (daughters' schools, healthcare provider, drug company advertisements, news stories) was conducted. RESULTS: Overall, 91% of parents had heard of HPV vaccine. Parents were more likely to be aware if they had household incomes of $50,000 or higher, were women, had non-Hispanic white daughters, or had daughters vaccinated against meningitis. Information sources included drug company advertisements (64%), healthcare providers (50%), news stories (50%), and schools (9%). Only parents who heard from their children's healthcare providers were more likely to initiate HPV vaccine for their daughters. CONCLUSIONS: Parents had rarely heard of the vaccine through schools. The only source associated with vaccine initiation was hearing from a healthcare provider.