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INTRODUCTION: Community engagement is increasingly recognized as a critical component of research, but few studies provide details on how to successfully incorporate community perspectives in urological research. This manuscript describes the community engagement strategy used by the Prevention of Lower Urinary Tract Symptoms Research Consortium (PLUS) to design RISE FOR HEALTH (RISE), a multicenter, population-based, prospective cohort study to promote bladder health. METHODS AND RESULTS: The PLUS Community Engagement Subcommittee, guided by a set of antiracist community engagement principles and practices, organized, implemented, and communicated findings for all RISE community engagement activities. Community engagement was conducted through a diverse network of community partners at PLUS clinical research centers called Rapid Assessment Partners (RAPs). Via online surveys (4), virtual discussion groups (14), and one-on-one interviews (12), RAPs provided input on RISE processes and materials, including in-person visit procedures, specimen collection instructions, survey data collection instruments, recruitment materials, the study website, and the study name. This process resulted in significant changes to these aspects of the study design with reciprocal benefits for the community partners. DISCUSSION: Meaningful community engagement improved the design and implementation of RISE. PLUS will continue to engage community partners to interpret the RISE study results, disseminate RISE findings, and inform other PLUS studies toward the development of interventions to promote bladder health. Future urological studies would also benefit from community participation in determining priority research questions to address.
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Participación de la Comunidad , Vejiga Urinaria , Humanos , Estudios Prospectivos , Participación de los Interesados , Proyectos de InvestigaciónRESUMEN
INTRODUCTION: The spectrum of bladder health and the factors that promote bladder health and prevent lower urinary tract symptoms (LUTS) among women are not well understood. This manuscript describes the rationale, aims, study design, sampling strategy, and data collection for the RISE FOR HEALTH (RISE) study, a novel study of bladder health in women conducted by the Prevention of Lower Urinary Tract Symptom (PLUS) Research Consortium. METHODS AND RESULTS: RISE is a population-based, multicenter, prospective longitudinal cohort study of community-dwelling, English- and Spanish-speaking adult women based in the United States. Its goal is to inform the distribution of bladder health and the individual factors (biologic, behavioral, and psychosocial) and multilevel factors (interpersonal, institutional, community, and societal) that promote bladder health and/or prevent LUTS in women across the life course. Key study development activities included the: (1) development of a conceptual framework and philosophy to guide subsequent activities, (2) creation of a study design and sampling strategy, prioritizing diversity, equity, and inclusion, and (3) selection and development of data collection components. Community members and cross-cultural experts shaped and ensured the appropriateness of all study procedures and materials. RISE participants will be selected by simple random sampling of individuals identified by a marketing database who reside in the 50 counties surrounding nine PLUS clinical research centers. Participants will complete self-administered surveys at baseline (mailed paper or electronic) to capture bladder health and LUTS, knowledge about bladder health, and factors hypothesized to promote bladder health and prevent LUTS. A subset of participants will complete an in-person assessment to augment data with objective measures including urogenital microbiome specimens. Initial longitudinal follow-up is planned at 1 year. DISCUSSION: Findings from RISE will begin to build the necessary evidence base to support much-needed, new bladder health promotion and LUTS prevention interventions in women.
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Síntomas del Sistema Urinario Inferior , Vejiga Urinaria , Adulto , Humanos , Femenino , Estudios Prospectivos , Estudios Longitudinales , Síntomas del Sistema Urinario Inferior/epidemiología , Síntomas del Sistema Urinario Inferior/prevención & control , Encuestas y Cuestionarios , Estudios Multicéntricos como AsuntoRESUMEN
While rural-urban cancer disparities persist, the research building capacity between rural communities and high-quality cancer centers remains limited. Thus, we describe how a National Cancer Institute-designated cancer center partnered with rural community stakeholders to adapt a cancer prevention-focused research and community capacity-building workshop. The workshop's goal was to strengthen community-academic partnerships and facilitate the development of sustainable well-resourced rural cancer-focused research. Researchers from the Siteman Cancer Center partnered with community leaders from rural counties in southern Illinois. We adapted the workshop from an existing evidence-based program. We analyzed changes in knowledge and research capacity and relevance to their community work. From February to May 2019, community partners guided all elements of the workshop development. Workshop participants were mostly White race (93%), had a college degree or beyond (75%), reported living in a rural community (93%), and represented an academic, faith-based, or healthcare institution (78%). Participants' mean knowledge scores of the presented content increased significantly after each session, from 9.3 to 9.9 for session 1 (p = 0.05) and 6.8 to 9.7 (p < 0.001) for session two. Through the workshop, participant scores also increased in research capacity skills, confidence, and their understanding of conducting research in the community. The workshop, co-curated and led by rural community leaders and researchers from Siteman Cancer Center, successfully increased knowledge of and interest in building cancer research capacity. Lessons from our work can inform the implementation of similar programs that address rural cancer health through research and community capacity building between rural community partners and urban cancer centers.
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Neoplasias , Población Rural , Humanos , Investigación Participativa Basada en la Comunidad , Investigación sobre Servicios de Salud , Investigadores/educación , Illinois , Relaciones Comunidad-Institución , Creación de Capacidad , Neoplasias/prevención & controlRESUMEN
BACKGROUND: Structural determinants of health are social, economic, and environmental forces that generate unequal opportunities for resources and unequally distribute exposure to risk. For example, economic constraint, racial discrimination and segregation, and environmental injustice shape population-level asthma prevalence and severity. Structural determinants are especially relevant to consider in clinical settings because they affect everyday household asthma management. OBJECTIVE: To examine how structural determinants shape everyday household management of pediatric asthma and offer a framework for providers to understand asthma management in social context. DESIGN: Qualitative interviews of caregivers for children with asthma. PARTICIPANTS: Participants included 41 caregivers in two U.S. cities: St. Louis, Missouri (n = 25) and Gainesville, Florida (n = 16). Most caregivers were women (83%), Black (73%) and/or had low socioeconomic status (SES; 78%). Caregivers cared for children with asthma aged 0-4 (32%), 5-11 (68%) and 12-17 (54%). APPROACH: We carried out narrative interviews with caregivers using an adapted McGill Illness Narrative Interview and using qualitative analysis techniques (e.g. inductive and deductive coding, constant comparison). KEY RESULTS: Caregivers highlighted three ways that structural determinants complicated asthma management at home: 1) housing situations, 2) competing household illnesses and issues, and 3) multi-household care. CONCLUSIONS: By connecting social, economic, and environmental injustices to the everyday circumstances of asthma management, our study can help providers understand how social contexts challenge asthma management and can open conversations about barriers to adherence and strategies for supporting asthma management at home. We offer recommendations for medical system reform, clinical interactions, and policy advocacy.
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Asma , Asma/epidemiología , Asma/terapia , Cuidadores , Niño , Comunicación , Composición Familiar , Femenino , Humanos , Masculino , Investigación CualitativaRESUMEN
BACKGROUND: Motivational interviewing (MI) can increase health-promoting behaviors and decrease health-damaging behaviors. However, MI is often resource intensive, precluding its use with people with limited financial or time resources. Mobile health-based versions of MI interventions or technology-delivered adaptations of MI (TAMIs) might increase reach. OBJECTIVE: We aimed to understand the characteristics of existing TAMIs. We were particularly interested in the inclusion of people from marginalized sociodemographic groups, whether the TAMI addressed sociocontextual factors, and how behavioral and health outcomes were reported. METHODS: We employed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for scoping reviews to conduct our scoping review. We searched PubMed, CINAHL, and PsycInfo from January 1, 1996, to April 6, 2022, to identify studies that described interventions incorporating MI into a mobile or electronic health platform. For inclusion, the study was required to (1) describe methods/outcomes of an MI intervention, (2) feature an intervention delivered automatically via a mobile or electronic health platform, and (3) report a behavioral or health outcome. The exclusion criteria were (1) publication in a language other than English and (2) description of only in-person intervention delivery (ie, no TAMI). We charted results using Excel (Microsoft Corp). RESULTS: Thirty-four studies reported the use of TAMIs. Sample sizes ranged from 10 to 2069 participants aged 13 to 70 years. Most studies (n=27) directed interventions toward individuals engaging in behaviors that increased chronic disease risk. Most studies (n=22) oversampled individuals from marginalized sociodemographic groups, but few (n=3) were designed specifically with marginalized groups in mind. TAMIs used text messaging (n=8), web-based intervention (n=22), app + text messaging (n=1), and web-based intervention + text messaging (n=3) as delivery platforms. Of the 34 studies, 30 (88%) were randomized controlled trials reporting behavioral and health-related outcomes, 23 of which reported statistically significant improvements in targeted behaviors with TAMI use. TAMIs improved targeted health behaviors in the remaining 4 studies. Moreover, 11 (32%) studies assessed TAMI feasibility, acceptability, or satisfaction, and all rated TAMIs highly in this regard. Among 20 studies with a disproportionately high number of people from marginalized racial or ethnic groups compared with the general US population, 16 (80%) reported increased engagement in health behaviors or better health outcomes. However, no TAMIs included elements that addressed sociocontextual influences on behavior or health outcomes. CONCLUSIONS: Our findings suggest that TAMIs may improve some health promotion and disease management behaviors. However, few TAMIs were designed specifically for people from marginalized sociodemographic groups, and none included elements to help address sociocontextual challenges. Research is needed to determine how TAMIs affect individual health outcomes and how to incorporate elements that address sociocontextual factors, and to identify the best practices for implementing TAMIs into clinical practice.
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Entrevista Motivacional , Envío de Mensajes de Texto , Enfermedad Crónica , Conductas Relacionadas con la Salud , Humanos , TecnologíaRESUMEN
Childhood cancer survivors have a higher risk of developing cardiomyopathy than members of the general population. Screening echocardiograms can facilitate early detection and treatment of cardiomyopathy. Furthermore, motivational interviewing can increase uptake of cardiac screening. However, such approaches are time- and resource-intensive, which limits their reach to the survivors who need them. We describe how we utilized a user-centered design process to translate an in-person motivational interviewing intervention into an eHealth tool to improve cardiac screening among childhood cancer survivors. We used an iterative, three-phase, user-centered design approach: (i) setting the stage (convening advisory boards and reviewing the original intervention), (ii) content programming and development (writing and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.) For cognitive interviews, participants were recruited via institutional participant registries and medical records. Data were analyzed using rapid qualitative analysis. During Phase 1, we identified survivor and provider advisors and outlined elements of the in-person intervention to change for the eHealth tool. During Phases 2 and 3, advisors recommended several modifications that guided the final intervention content and flow. Examples include: acknowledging potential hesitation or apprehension surrounding medical screenings, addressing barriers and facilitators to obtaining screening, and improving the tool's usability and appeal. In Phase 3, cognitive interview participants suggested additional refinements to the intervention language. This translation process shows that continued in-depth engagement of community advisors and iterative testing can improve the applicability of an eHealth to survivors' lived experiences and social contexts.
Childhood cancer survivors have a higher-than-average risk for developing heart damage compared to the general population. One-on-one interviews aimed at educating survivors about the importance of screening for heart damage can increase engagement in screening, but these programs are often too resource-intensive to be made available to large groups of survivors. Programs delivered using digital technology, like websites and smartphone apps, can be a more accessible alternative. In this article, we describe how we translated an in-person counseling program into a digital tool. We convened advisors who were childhood cancer survivors and healthcare providers to review the tool throughout the three-phase translation process: (i) setting the stage (convening advisory boards and reviewing original intervention), (ii) content programming and development (writing, and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.). Our translation process shows that continuously engaging with advisory boards and testing apps with participants can improve health programs in line with communities' diverse perspectives.
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Supervivientes de Cáncer , Entrevista Motivacional , Telemedicina , Diseño Centrado en el Usuario , Humanos , Entrevista Motivacional/métodos , Supervivientes de Cáncer/psicología , Femenino , Masculino , Niño , Cardiomiopatías/terapia , Cardiomiopatías/psicología , Adolescente , Neoplasias/psicología , Neoplasias/terapia , AdultoRESUMEN
Community engagement has been named a research priority by the National Institutes of Health, and scholars are calling for community engagement as an approach to address racism and equity in science. Robust community-engaged research can improve research quality, increase inclusion of traditionally marginalized populations, broaden the impact of findings on real-life situations, and is particularly valuable for underexplored research topics. The goal of this paper is to describe lessons learned and best practices that emerged from community engagement in a multi-institution population health research consortium. We describe how a foundation was laid to enable community-engaged research activities in the consortium, using a staged and stepped process to build and embed multi-level community-engaged research approaches.. We staged our development to facilitate (a) awareness of community engagement among consortium members, (b) the building of solidarity and alliances, and (c) the initiation of long-term engagement to allow for meaningful research translation. Our stepped process involved strategic planning; building momentum; institutionalizing engagement into the consortium infrastructure; and developing, implementing, and evaluating a plan. We moved from informal, one-time community interactions to systematic, formalized, capacity-building reciprocal engagement. We share our speed bumps and troubleshooting that inform our recommendations for other large research consortia-including investing the time it takes to build up community engagement capacity, acknowledging and drawing on strengths of the communities of interest, assuring a strong infrastructure of accountability for community engagement, and grounding the work in anti-racist principles.
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Background. Sociodemographically diverse study samples are critical for research related to health decision making. However, not all researchers have the training, capacity, and funding to engage research methods that recruit the most diverse populations. Objective and Methods. We used participant-generated data, staff salary data, and participant observation to examine the effectiveness and cost of strategies that we used for screening, enrolling, and retaining a sociodemographically diverse sample for a risk communication and behavior change randomized controlled trial. Results. It took approximately 646 hours to contact 1,626 individuals and enroll 554 participants (505 of whom completed the baseline survey; 45.2% were members of a underrepresented racial/ethnic group, 19.4% had no college education, 49.5% were age 30-49 y). Retention at 90-d follow-up was 93%. The total cost was USD$19,898.50. The average cost was $35.92 per participant enrolled. In-person recruitment was most successful in identifying the largest proportion of screened and eligible participants who were members of underrepresented racial/ethnic populations (32.8% and 27.8%, respectively) and with no college experience (39.7% and 33.5%, respectively); it also had the highest total cost ($8,079.17). Existing research pools identified the largest proportion of younger participants (ages 30-49 y; 39.3% and 43.4% for screened and eligible, respectively). Existing listservs yielded the smallest proportion of individuals with no college experience and the fewest members of underrepresented racial/ethnic populations but had the lowest total cost ($290.33). Newspaper ads identified the fewest younger individuals and also had the highest cost per participant enrolled ($166.21). Word of mouth had the lowest cost per participant enrolled ($10.47). Conclusion. Results help medical decision-making researchers formulate recruitment plans that increase sociodemographic diversity in study samples. We also ask funders to accommodate increased costs required to maximize sociodemographic diversity in medical decision-making research. Highlights: We provide concrete strategies for recruiting, enrolling, and retaining a sociodemographically diverse study sample.We offer cost estimates for all stages of study recruitment and found that in-person recruitment was the most effective, but also the most expensive, way to identify Black participants and participants with no college experience.It is critical for investigators to have access to institutional infrastructure and resources to support conducting research that is inclusive of diverse sociodemographic groups.An intentionally diverse recruitment staff supports a diverse study sample.
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BACKGROUND: The promise of precision medicine could be stymied if people do not accept the legitimacy of personalized risk information. We tested 4 explanations for skepticism of personalized diabetes risk information. METHOD: We recruited participants (N = 356; Mage = 48.6 [s = 9.8], 85.1% women, 59.0% non-Hispanic white) from community locations (e.g., barbershops, churches) for a risk communication intervention. Participants received personalized information about their risk of developing diabetes and heart disease, stroke, colon cancer, and/or breast cancer (women). Then they completed survey items. We combined 2 items (recalled risk, perceived risk) to create a trichotomous risk skepticism variable (acceptance, overestimation, underestimation). Additional items assessed possible explanations for risk skepticism: 1) information evaluation skills (education, graph literacy, numeracy), 2) motivated reasoning (negative affect toward the information, spontaneous self-affirmation, information avoidance); 3) Bayesian updating (surprise), and 4) personal relevance (racial/ethnic identity). We used multinomial logistic regression for data analysis. RESULTS: Of the participants, 18% believed that their diabetes risk was lower than the information provided, 40% believed their risk was higher, and 42% accepted the information. Information evaluation skills were not supported as a risk skepticism explanation. Motivated reasoning received some support; higher diabetes risk and more negative affect toward the information were associated with risk underestimation, but spontaneous self-affirmation and information avoidance were not moderators. For Bayesian updating, more surprise was associated with overestimation. For personal relevance, belonging to a marginalized racial/ethnic group was associated with underestimation. CONCLUSION: There are likely multiple cognitive, affective, and motivational explanations for risk skepticism. Understanding these explanations and developing interventions that address them will increase the effectiveness of precision medicine and facilitate its widespread implementation.
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Neoplasias de la Mama , Motivación , Humanos , Femenino , Persona de Mediana Edad , Masculino , Teorema de Bayes , Encuestas y Cuestionarios , AlfabetizaciónRESUMEN
Rural residents in underserved areas face many barriers to health services, including colonoscopies for colorectal cancer (CRC) screening, but rural healthcare providers may assist patients navigating these challenges due to familiarity with local contexts. In 2017 to 2018, we interviewed clinical practitioners and staff (n = 40) at 13 primary care and gastroenterology locations across rural Southern Illinois. We used a semi-structured interview guide that addressed system, provider, and patient levels including domains related to barriers, facilitators, and needs for intervention. This article focuses on 3 main elements related to distance and transportation that emerged from inductive coding. First, providers described long distance travel for care as normalized but not necessarily preferable. Second, they identified and described distance-related challenges specific to CRC screening, and third, providers discussed strategies, mostly related to transportation, they use to navigate those challenges. Finally, they suggested a variety of broader solutions to reduce distance and transportation barriers to screening. Overall, distance to care remains a challenge to increasing CRC screening and contributes to disparities in rural communities. To increase early detection and reduce rural cancer disparities, efforts to increase screening and follow-up must address ways to help patients and providers navigate this distance within their local communities and contexts.
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Neoplasias Colorrectales , Accesibilidad a los Servicios de Salud , Humanos , Población Rural , Detección Precoz del Cáncer , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , IllinoisRESUMEN
BACKGROUND: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. OBJECTIVE: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. METHODS: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that "most" interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). RESULTS: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that "most" interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). CONCLUSIONS: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not.
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Additional Middle Paleolithic human remains from layers 17, 18, and 22 of the Gruta da Oliveira, Portugal consist of a proximal manual phalanx 2 (Oliveira 5), a partial postcanine tooth (Oliveira 6), a humeral diaphysis (Oliveira 7), a distal mandibular molar (Oliveira 8), and a mandibular premolar (P(3) ) (Oliveira 9). Oliveira 5, 6, and 8 are unremarkable for Late Pleistocene humans. The Oliveira 7 right humerus is moderately robust or the individual had the stocky body proportions of other European (including Iberian) Neandertals. The Oliveira 9 P(3) has a large and symmetrical crown and lacks a distal accessory ridge and accessory lingual cusps, overlapping both Neandertal and recent human ranges of variation. It contrasts with at least recent human P(3) s in having relatively thin enamel. These join the Oliveira 1 to 4 remains in further documenting early MIS 3 Neandertal morphology in western Iberia.
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Huesos/anatomía & histología , Fósiles , Hombre de Neandertal/anatomía & histología , Diente/anatomía & histología , Animales , Antropología Física , Humanos , Portugal , Estadísticas no ParamétricasRESUMEN
Objective: We examined the extent to which caregivers of children with asthma used interpersonal comparisons-a novel comparison process that parallels social comparison and temporal comparison-to form judgments about their child. Methods & Measures: Using semi-structured interviews adapted from the McGill Illness Narrative Interview, we examined the interpersonal comparisons that caregivers of a child with asthma (n = 41) made regarding their child. Results: Interpersonal comparisons influenced caregiver thoughts, feelings, and behavior. They helped caregivers distinguish asthma from other breathing problems, evaluate the severity of the asthma, and understand their child's experience. However, they also created uncertainty by highlighting the complex, unpredictable nature of asthma. Interpersonal comparisons were a source of gratitude and hope, but also worry and frustration. Finally, interpersonal comparisons influenced caregivers' decisions and actions, resulting in decisions that aligned with and, at times, ran counter to biomedical models of asthma care. In some instances, caregivers used interpersonal comparisons to motivate their child's behavior. Conclusion: The interpersonal comparisons served as a source of information for caregivers trying to understand and manage their child's asthma. Investigating these comparisons also expands how we think about other comparison theories.
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In the United States, pediatric asthma is distributed geographically across lines of racialized segregation. We draw on emplacement, or the theory that embodied experiences and the material world are mutually informed, to situate such geographic trends within the narratives of 41 caregivers of children with asthma. Results suggest that caregivers identified and managed asthma-related risk with regard to the relational and structural conditions of three categories of locations: (1) houses, (2) neighborhoods, and (3) schools and other childhood institutions. Within each type of location, caregivers used emplaced knowledge and emplaced caregiving tactics to respond to asthma-related risk. Based on our findings, we identify critical intervention topics that are consistent with families' everyday lived experiences of place.
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Asma , Cuidadores , Niño , Humanos , Narración , Estados UnidosRESUMEN
OBJECTIVES: (1) Test whether a mental imagery-based self-regulation intervention increases physical activity behaviour over 90 days; (2) Examine cognitive and affective precursors of change in physical activity behaviour. DESIGN: A randomized control trial with participants (N = 500) randomized to one of six intervention conditions in a 3 (risk communication format: bulleted list, table, risk ladder) x 2 (mental imagery behaviour: physical activity, active control [sleep hygiene]) factorial design. METHODS: After receiving personalized risk estimates via a website on a smartphone, participants listened to an audiorecording that guided them through a mental imagery activity related to improving physical activity (intervention group) or sleep hygiene behaviour (active control). Participants received text message reminders to complete the imagery for 3 weeks post-intervention, 4 weekly text surveys to assess behaviour and its cognitive and affective precursors, and a mailed survey 90 days post-baseline. RESULTS: Physical activity increased over 90 days by 19.5 more minutes per week (95%CI: 2.0, 37.1) in the physical activity than the active control condition. This effect was driven by participants in the risk ladder condition, who exercised 54.8 more minutes (95%CI 15.6, 94.0) in the physical activity condition than participants in the active control sleep hygiene group. Goal planning positively predicted physical activity behaviour (b = 12.2 minutes per week, p = 0.002), but self-efficacy, image clarity, and affective attitudes towards behaviours did not (p > 0.05). CONCLUSIONS: Mental imagery-based self-regulation interventions can increase physical activity behaviour, particularly when supported by personalized disease risk information presented in an easy-to-understand format.
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Autocontrol , Envío de Mensajes de Texto , Cognición , Ejercicio Físico , Humanos , MotivaciónRESUMEN
RATIONALE: Many studies propose that patients', caregivers', and children's asthma management practices may diverge from biomedical recommendations because their understandings of asthma (i.e., conceptual models) are different from biomedical perspectives. However, little research in this area has examined conceptual models of asthma using embodiment theory, which suggests that caregivers' and children's experiences of the physical body shape their perspectives and consequent management strategies. OBJECTIVE: We investigated how two embodied processes of symptom perception-detection and interpretation-may influence caregiver or patient conceptions of asthma. METHODS: We interviewed 41 caregivers of children with asthma in Gainesville, Florida, and St. Louis, Missouri, and conducted ethnographic visits or virtual interviews with 19 children with asthma aged 6-16. RESULTS: Four aspects of asthma's embodied experience shaped conceptual models via processes of detection and interpretation: 1) symptoms are experienced in the context of other bodily processes; 2) acute symptoms and exacerbations are more salient than their absence; 3) the embodied experience of asthma is one of integrated physiological and emotional processes; and 4) caregivers and children acquire embodied practices of perceiving symptoms that produce embodied knowledge. CONCLUSION: Participant narratives suggest that embodied experiences of asthma shape caregivers' and children's understandings of asthma in ways that differ from the biomedical model. We argue that a focus on embodied experiences may provide important ground for mutual understanding and communication between providers and caregivers and/or patients.
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Asma , Cuidadores , Adolescente , Cuidadores/psicología , Niño , Comunicación , Florida , Humanos , Modelos TeóricosRESUMEN
BACKGROUND: Personalized medicine may increase the amount of probabilistic information patients encounter. Little guidance exists about communicating risk for multiple diseases simultaneously or about communicating how changes in risk factors affect risk (hereafter "risk reduction"). PURPOSE: To determine how to communicate personalized risk and risk reduction information for up to 5 diseases associated with insufficient physical activity in a way laypeople can understand and that increases intentions. METHODS: We recruited 500 participants with <150 min weekly of physical activity from community settings. Participants completed risk assessments for diabetes, heart disease, stroke, colon cancer, and breast cancer (women only) on a smartphone. Then, they were randomly assigned to view personalized risk and risk reduction information organized as a bulleted list, a simplified table, or a specialized vertical bar graph ("risk ladder"). Last, they completed a questionnaire assessing outcomes. Personalized risk and risk reduction information was presented as categories (e.g., "very low"). Our analytic sample (N = 372) included 41.3% individuals from underrepresented racial/ethnic backgrounds, 15.9% with vocational-technical training or less, 84.7% women, 43.8% aged 50 to 64 y, and 71.8% who were overweight/obese. RESULTS: Analyses of covariance with post hoc comparisons showed that the risk ladder elicited higher gist comprehension than the bulleted list (P = 0.01). There were no significant main effects on verbatim comprehension or physical activity intentions and no moderation by sex, race/ethnicity, education, numeracy, or graph literacy (P > 0.05). Sequential mediation analyses revealed a small beneficial indirect effect of risk ladder versus list on intentions through gist comprehension and then through perceived risk (bIndirectEffect = 0.02, 95% confidence interval: 0.00, 0.04). CONCLUSION: Risk ladders can communicate the gist meaning of multiple pieces of risk information to individuals from many sociodemographic backgrounds and with varying levels of facility with numbers and graphs.
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Costo de Enfermedad , Alfabetización en Salud/métodos , Relaciones Profesional-Paciente , Medición de Riesgo/métodos , Adulto , Anciano , Femenino , Alfabetización en Salud/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Medición de Riesgo/normas , Medición de Riesgo/estadística & datos numéricos , Factores de Riesgo , Conducta de Reducción del Riesgo , Encuestas y CuestionariosRESUMEN
PURPOSE: Rural health networks have the potential to improve health care quality and access. Despite this, the use of network analysis to study rural health networks is limited. The purpose of this study was to use network analysis to understand how a network of rural breast cancer care providers deliver services and to demonstrate the value of this methodology in this research area. METHODS: Leaders at 47 Federally Qualified Health Centers and Rural Health Clinics across 10 adjacent rural counties were asked where they refer patients for mammograms or breast biopsies. These clinics and the 22 referral providers that respondents named comprised the network. The network was analyzed graphically and statistically with exponential random graph modeling. FINDINGS: Most (96%, n = 45) of the clinics and referral sites (95%, n = 21) are connected to each other. Two clinics of the same type were 62% less likely to refer patients to the same providers as 2 clinics of different types (OR = 0.38, 95% CI = 0.29-0.50). Clinics in the same county have approximately 8 times higher odds of referring patients to the same providers compared to clinics in different counties (OR = 7.80, CI = 4.57-13.31). CONCLUSIONS: This study found that geographic location of resources is an important factor in rural health care providers' referral decisions and demonstrated the usefulness of network analysis for understanding rural health networks. These results can be used to guide delivery of patient care and strengthen the network by building resources that take location into account.
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Neoplasias de la Mama/diagnóstico , Conducta Cooperativa , Tamizaje Masivo/métodos , Atención al Paciente/métodos , Servicios de Salud Rural/tendencias , Adulto , Redes Comunitarias , Detección Precoz del Cáncer/métodos , Detección Precoz del Cáncer/tendencias , Femenino , Humanos , Tamizaje Masivo/tendencias , Persona de Mediana Edad , Atención al Paciente/tendencias , Calidad de la Atención de Salud/normasAsunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Niño , Estrés Financiero , Neoplasias/terapia , Costo de Enfermedad , Gastos en Salud , Calidad de VidaRESUMEN
BACKGROUND: While there is convincing evidence on interventions to improve bowel preparation for patients, the evidence on how to implement these evidence-based practices (EBPs) in outpatient colonoscopy settings is less certain. The Strategies to Improve Colonoscopy (STIC) study compares the effect of two implementation strategies, physician education alone versus physician education plus an implementation toolkit for staff, on adoption of three EBPs (split-dosing of bowel preparation, low-literacy education, teach-back) to improve pre-procedure and intra-procedure quality measures. The implementation toolkit contains a staff education module, website containing tools to support staff in delivering EBPs, tailored patient education materials, and brief consultation with staff to determine how the EBPs can be integrated into the existing workflow. Given adaptations to the implementation plan and intentional flexibility in the delivery of the EBPs, we utilize a pragmatic study to balance external validity with demonstrating effectiveness of the implementation strategies. METHODS/DESIGN: Participants will include all outpatient colonoscopy physicians, staff, and patients from a convenience sample of six endoscopy settings. Aim #1 will explore the relative effect of two strategies to implement patient-level EBPs on adoption and clinical quality outcomes. We will assess the change in level and trends of clinical quality outcomes (i.e., adequacy of bowel preparation, adenoma detection) using segmented regression analysis of interrupted time series data with two groups (intervention and delayed start). Aim #2 will examine the influence of organizational readiness to change on EBP implementation. We use a PRECIS diagram to reflect the extent to which each indicator of the study was pragmatic versus explanatory, revealing a largely pragmatic study. DISCUSSION: Implementation challenges have already motivated several adaptations to the original plan, reflecting the nature of implementation in real-world healthcare settings. The pragmatic study responds to the evolving needs of its healthcare partners and allows for flexibility in intervention delivery, thereby informing clinical decision-making in real-world settings. The current study will provide information about what works (intervention effectiveness), for whom it works (influence of Medicaid versus other insurance), in which contexts it works (setting characteristics that influence implementation), and how it works best (comparison of implementation strategies).