Building a regional pediatric asthma learning health system in support of optimal, equitable outcomes.

Introduction: Asthma is characterized by preventable morbidity, cost, and inequity. We sought to build an Asthma Learning Health System (ALHS) to coordinate regional pediatric asthma improvement activities. Methods: We generated quantitative and qualitative insights pertinent to a better, more equitable care delivery system. We used electronic health record data to calculate asthma hospitalization rates for youth in our region. We completed an "environmental scan" to catalog the breadth of asthma-related efforts occurring in our children's hospital and across the region. We supplemented the scan with group-level assessments and focus groups with parents, clinicians, and community partners. We used insights from this descriptive epidemiology to inform the definition of shared aims, drivers, measures, and prototype interventions. Results: Greater Cincinnati's youth are hospitalized for asthma at a rate three times greater than the U.S. average. Black youth are hospitalized at a rate five times greater than non-Black youth. Certain neighborhoods bear the disproportionate burden of asthma morbidity. Across Cincinnati, there are many asthma-relevant activities that seek to confront this morbidity; however, efforts are largely disconnected. Qualitative insights highlighted the importance of cross-sector coordination, evidence-based acute and preventive care, healthy homes and neighborhoods, and accountability. These insights also led to a shared, regional aim: to equitably reduce asthma-related hospitalizations. Early interventions have included population-level pattern recognition, multidisciplinary asthma action huddles, and enhanced social needs screening and response. Conclusion: Learning health system methods are uniquely suited to asthma's complexity. Our nascent ALHS provides a scaffold atop which we can pursue better, more equitable regional asthma outcomes.

Group Level Assessment Methodology as a Liberating Structure Within Qualitative and Participatory Research.

Group level assessment (GLA) is a qualitative and participatory research-to-action methodology designed to engage a large group of relevant participants throughout the research process. As originally conceived, a single GLA session is led by a trained facilitator who guides the participants through seven structured steps: climate setting, generating, appreciating, reflecting, understanding, selecting, and action. The purpose of this manuscript is to describe the 25-year trajectory and uses, contributions as a liberating structure, and adaptations of GLA.

Immigrant Perspectives of Social Connection in a Nontraditional Migration Area.

Social connection is a core dimension of health and wellness among all populations, yet the experience of moving to and living in a new country makes social and community-level influences particularly salient for immigrants. We interviewed 38 Latino immigrants living in a nontraditional migration area to explore the social and community foundations of health and wellness. Using hybrid (inductive/deductive) qualitative analysis, we identified seven domains of social connection from the perspective of the interviewed participants: (1) lens of the individual; (2) immigrant experience; (3) interpersonal support; (4) community belonging; (5) community capital; (6) community navigation; and (7) social acceptance. Social connection domains generated by participants are consistent with the scientific literature, but this study identifies the specific social factors that immigrants describe as most salient to their own health and wellness. Our community-generated understanding of social connection can be used by healthcare providers to reduce risks and build on assets that will improve the health of immigrants living in nontraditional migration areas. Additionally, these results might serve as a foundation for a quantitative measure that can be used by providers to more accurately and comprehensively assess the social connection of their patients and by researchers to evaluate the effectiveness of community-level interventions for immigrants.

Infant Obesity Prevention Programs for Underrepresented Mothers in a Home Visiting Program: A Qualitative and Community-Engaged Needs Assessment.

A qualitative, community-engaged assessment was conducted to identify needs and priorities for infant obesity prevention programs among mothers participating in home visiting programs. Thirty-two stakeholders (i.e., community partners, mothers, home visitors) affiliated with a home visiting program serving low-income families during the prenatal to age three period participated in group level assessment sessions or individual qualitative interviews. Results indicated families face many challenges to obesity prevention particularly in terms of healthy eating. An obesity prevention program can address these challenges by offering realistic feeding options and non-judgmental peer support, improving access to resources, and tailoring program content to individual family needs and preferences. Informational needs, family factors in healthy eating outcomes, and the importance of access and awareness of programs were also noted. To ensure the cultural- and contextual-relevance of infant obesity prevention programs for underserved populations, needs and preferences among community stakeholders and the focal population should be used as a roadmap for intervention development.

Decision Support Needs for Transgender and Gender-Diverse Youth and Families: A Patient-Centered Needs Assessment.

PURPOSE: Due to the intertwining of medical and social decision-making, new approaches to shared decision-making are likely needed for supporting decisions related to the care of transgender and gender-diverse (TGD) adolescents. Prior to developing decision support interventions for TGD youth, a decision support needs assessment must be completed. METHODS: Self-identified TGD youth, family members of TGD youth, clinicians caring for this population, and community advocates participated in one of six group level assessments (GLAs). GLA is a structured, participatory qualitative method that engages diverse groups of stakeholders in generating and evaluating ideas on the topic of interest. Upon completion of all GLAs, a survey was developed and distributed to GLA participants inviting them to rank ideas generated during the GLAs. RESULTS: Six major themes emerged from the GLAs regarding decision support needs, including: improving healthcare provider skills and education, increasing access to support outside the healthcare system, strengthening community and societal support, developing special information resources, supporting youth in leading decision-making about transition, and modifying the healthcare system. In the follow-up survey, improving healthcare provider skills and education was the most commonly chosen top priority. DISCUSSION: Participants identified decision support needs for TGD youth and their families that were mostly distinct from traditional decision support approaches. Participants' focus on the need to improve healthcare provider skills and education provides an opportunity to couple gender-focused education with shared decision-making skills, an approach that may be more sustainable than tools for specific decisions.

Perceptions and experiences of Latinx parents with language barriers in a pediatric emergency department: a qualitative study.

BACKGROUND: Prior research has shown disparities exist among Latinx children who require treatment for respiratory illnesses within the pediatric emergency department (PED). Limited data exist regarding Latinx families' experiences on the care they received at PEDs within non-traditional destination areas (NDA). Their experiences can identify areas of improvement to potentially reduce healthcare disparities among pediatric patients within this population. The purpose of this qualitative study was to explore the lived experiences of Latinx families with low English proficiency in the PED with a NDA. The broader purpose was to identify areas of improvement for reducing health care disparities among Latinx families. METHODS: We used qualitative methods to analyze semi-structured interviews among Latinx families who presented to the PED with their 0-2 year-old child for a respiratory illness from May 2019 through January 2020. All participants had low English proficiency and requested a Spanish interpreter during registration. All interviews were transcribed and reviewed using thematic analysis based on a phenomenology framework. RESULTS: Interviews were conducted with 16 Latinx parents. Thematic analysis revealed four major themes: (1) Uncertainty - Families expressed uncertainty regarding how to care for a child with distressing symptoms, (2) Communication - Families favored in-person interpreters which enhanced communication and allowed families to feel more informed, (3) System Burden - Families reported that the unfamiliarity with the US health system and lack of resources are additional burdens, and (4) Emotional Support - The emergency department visits garnered confidence and reassurance for families. CONCLUSIONS: Our study identified four major themes among Latinx families within a PED of a NDA. Potential areas of interventions should focus on supporting access to an interpreter, improving information delivery, and enhancing education on community resources for families with low English proficiency.

Group Level Assessment (GLA) as a methodological tool to facilitate science education.

Group Level Assessment (GLA) is a qualitative, participatory research methodology that can be used within science education, specifically to meet the Science and Engineering Practices dimension of the K-12 Next Generation Science Standards. In contrast to traditional qualitative research methods, GLA is a concrete methodological tool intended for large groups. GLA follows a 7-step process in which diverse stakeholders work together to generate, analyze and prioritize ideas that lead to action planning. Emphasizing personal relevance, shared decision making, systematic inquiry, and collaboration in the design and process, GLA is best positioned conceptually and theoretically within community-based participatory research and inquiry-based learning approaches. The purpose of this manuscript is to describe how GLA can be utilized as an innovative methodology to incorporate students' lived experiences in science education. We describe how to conduct GLA and provide a case example of GLA in action conducted as part of a larger science education program with students and teachers in STEM.

The Opportunity of Social Ecological Resilience in the Promotion of Youth Health and Wellbeing: A Narrative Review.

Youth experience adversity that increases their risk for immediate and long-term health consequences. Resilience has traditionally been conceptualized as an internal disposition or trait that supports youth to overcome that risk and avoid the negative impact on their health and wellbeing. However, this model of resilience overemphasizes the role of the individual and their capacity to control their environment, while minimizing the integral role of relational, social, structural, and cultural contexts in which they live. Instead, social ecological resilience (SER) emphasizes the influence of social and environmental factors on individual processes and outcomes and offers different pathways for preventive interventions to promote youth health and wellbeing. Within preventive medicine, it is important for researchers and practitioners to understand the processes that support or impede SER, particularly in youth when adversity can impact health throughout the lifespan. The purpose of this review was to examine the contributions and scope of the SER model in research on youth, with the goal of advancing SER-informed research and interventions within preventive medicine. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) approach as a guiding framework, we conducted a narrative review of the literature. The review characterizes 37 existing studies across the fields of education, psychology, and social work in terms of topic, focal population, methods, use of SER, and implications. We conclude with recommendations for future applications of SER to promote the health and wellbeing of youth.

Adolescents and Young Adults With Spina Bifida Transitioning to Adulthood: A Comprehensive Community-Based Needs Assessment.

OBJECTIVE: Developing effective interventions to promote successful transition to adulthood for adolescents and young adults (AYA) with spina bifida (SB) requires input from SB community stakeholders, particularly AYA themselves. The goal of this study was to identify and prioritize facilitators and barriers of successful transition to a healthy adult life for AYA with SB. METHODS: We utilized concept mapping, a community-engaged research methodology. We recruited a purposeful sample of SB community stakeholders: AYA with SB, parents/caregivers, pediatric and adult health care providers, and community organizations. Participants generated ideas to open-ended prompts. A subset of participants sorted responses into groups of similar ideas. Multidimensional scaling and hierarchical cluster analysis were applied to generate cluster maps. The concept map was determined by identifying the optimal cluster number that qualitatively represented meaningful and distinct concepts. Concepts were rated by participants for importance and feasibility. RESULTS: Participants generated 90 unique ideas that were then sorted. The research team chose a 10-cluster concept map: coordinated and comprehensive medical care, health and wellness, self-management, self-advocacy, skills to maximize independence, inclusivity and relationship supports, physical accessibility of the environment, employment, finances, and community- and school-based resources. Self-management, self-advocacy, and inclusivity and relationship supports were rated as both highly feasible and important. CONCLUSIONS: By using concept mapping to engage diverse stakeholders, including people with intellectual, development, and physical disabilities, this study prioritized less traditional areas like inclusivity and relationship supports to focus improvement efforts relevant to AYA with SB becoming healthy adults.

Intercultural differences in healthcare experiences of Latinos in a nontraditional destination area.

Background: Disparities in health care access for Latinos are well documented, but little is known about how they may impact immigrants from diverse countries of origin differently. Immigrants in nontraditional destination areas face greater disparities, allowing more robust comparison of Latino heritage groups in such regions. Method: Mexican (N = 258) and Guatemalan (N = 143) participants were recruited for a community-based participatory research (CBPR) initiative in Cincinnati, Ohio: Latinos Unidos por la Salud (LU-Salud). Community partners recruited Latino immigrants to complete a brief survey about health care difficulties. Mixed methods data analysis was employed using t tests, Fisher's exact test, and a qualitative content analysis approach to analyze group differences. Results: Although both groups reported challenges, Guatemalans reported greater difficulty navigating health care. Conversely, Mexicans more commonly used local resources like health fairs to seek health information and described fewer language barriers. Qualitatively, Guatemalans and Mexicans had different perceptions of the biggest health problem for Latinos in Cincinnati. Notably, Mexicans identified major chronic diseases as community health problems. Discussion: Mexicans and Guatemalans show different patterns of health care engagement and express distinct concerns. Future work should consider the role of health literacy in informing the heterogenous experiences and needs of Latinos from diverse countries of origin. Further, interventions should train health care providers to provide culturally sensitive services, with interpreters available in multiple languages to address heterogenous language needs. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Implementation of a Stress Intervention with Latino Immigrants in a Non-traditional Migration City.

Stress negatively impacts health outcomes across all racial and ethnic groups, but the health disparities experienced by Latino immigrants in nontraditional migration cities are exacerbated by undeveloped infrastructure and weak social support networks. Immigrants in new migration cities can be difficult to engage in health interventions and are therefore underrepresented in the very research where their inclusion is most crucial. To effectively engage Latino immigrants, a team of academic and community researchers collaborated on a community-based participatory research project to design and implement a stress and coping intervention. Top stressors reported were family, children, and work, but health was most commonly identified as the primary stressor. Participants overwhelmingly chose physical activity goals for stress reduction. Pre- to post- intervention results revealed significant improvements in social support and stress management. Results demonstrate the effectiveness of a peer-led, community-partnered approach to implementing a stress intervention with Latino immigrants in a nontraditional migration city.

Fathers Know Best: Inner-City African American Fathers' Perceptions Regarding Their Involvement in the Pediatric Medical Home.

OBJECTIVE: Despite nearly three in four African American (AA) children being born to unwed mothers, AA fathers maintain relatively high levels of parenting engagement, whether or not they live with their children. While father involvement correlates with decreased adverse child health outcomes, the nature of AA father involvement in child health-including engagement in the pediatric medical home-remains largely unexplored. Our study aimed to assess perceptions of pediatric medical home participation among a cohort of urban, AA fathers. METHODS: Group level assessments (GLA; N = 17) were conducted among AA fathers in an urban, Midwestern neighborhood to examine perceptions regarding pediatric medical home involvement. Study participants generated themes based on GLA responses, and study staff used grounded theory as a framework for qualitative analysis of thematic data. RESULTS: Fathers desired to have their parental role acknowledged by mothers and pediatricians. They perceived unrecognized parenting strengths, including being role models, teachers, and providers for their children. Respondents endorsed uncertainty navigating the pediatric health care system, unawareness of their children's pediatric appointments, and feeling excluded from health care decision-making by their children's mothers and pediatric providers. CONCLUSIONS: In our cohort, AA fathers have a strong desire to be involved in their children's healthy development, but feel marginalized in their parenting role. AA fathers want improved communication with physicians and their children's mothers and to be actively included in health care decision-making. Enhanced efforts to engage fathers in the pediatric medical home may lead to improved health outcomes and reduced disparities for minority children.

Place Matters in Non-Traditional Migration Areas: Exploring Barriers to Healthcare for Latino Immigrants by Region, Neighborhood, and Community Health Center.

This paper identifies differences in adult Latino immigrant barriers to healthcare in the Cincinnati area in Hamilton County, OH, on three levels: by region, by neighborhood, and by community health center. Secondary data analysis was performed on 439 surveys. Respondents were aggregated by the geographic regions and neighborhoods where they live and by two community health centers where they receive care. Outcome measures included pragmatic and skill barrier indices adapted from the Barriers to Care Questionnaire (BCQ); the pragmatics index consists logistical barriers, including transportation and cost; the skills index is made up of items related to navigating the healthcare system, including communicating with physicians and completing paperwork. The results indicate that immigrant Latinos living in western Cincinnati and northern Hamilton County face significantly higher pragmatic barriers to care, while Latino immigrants going to a community health center in western Cincinnati have significantly fewer pragmatic and skill barriers than immigrants utilizing a nearby community health center. Because healthcare options for undocumented immigrants do not improve with the Affordable Care Act, community health centers will continue to serve as their primary source of care. This is particularly true in non-traditional migration areas, where immigrants tend to be isolated and lack resources. Efforts to improve access to healthcare for immigrant Latinos require place-based approaches that allow for targeted resources to improve care in these locations. This study helps to fill that need by identifying variation in barriers to care on multiple levels and offering strategies to alleviate these barriers.

Putting a face and context on pediatric surgery cancelations: The development of parent personas to guide equitable surgical care.

Last-minute cancelation of planned surgery can have substantial psychological, social, and economic effects for patients/families and also leads to wastage of expensive health-care resources. In order to have a deeper understanding of the contextual, psychological, practical, and behavioral factors that potentially impact pediatric surgery cancelation, we conducted a qualitative study to create 'personas' or fictional portraits of parents who are likely to cancel surgery. We conducted in-depth qualitative interviews with 21 parents of children who were considered 'at risk' for surgical cancelation and whose scheduled surgery was canceled at late notice. From the themes, patterns, and associated descriptive phrases in the data, we developed and validated five different personas of typical scenarios reflecting parent experiences with surgery and surgery cancelations. The personas are being employed to guide contextualized development of interventions tailored to prototypical families as they prepare and attend for surgery.

See what we say: using concept mapping to visualize Latino immigrant's strategies for health interventions.

OBJECTIVES: Researchers need specific tools to engage community members in health intervention development to ensure that efforts are contextually appropriate for immigrant populations. The purpose of the study was to generate and prioritize strategies to address obesity, stress and coping, and healthcare navigation that are contextually appropriate and applicable to the Latino immigrant community in Cincinnati, Ohio, and then use the results to develop specific interventions to improve Latino health in our area. METHODS: A community-academic research team used concept mapping methodology with over 200 Latino immigrants and Latino-serving providers. A community intervention planning session was held to share the final concept maps and vote on strategies. RESULTS: The concept maps and results from the intervention planning session emphasized a community lay health worker model to connect the Latino immigrant community with resources to address obesity, stress and coping, and healthcare navigation. CONCLUSIONS: Concept maps allowed for the visualization of health intervention strategies prioritized by the larger Latino immigrant community. Concept maps revealed the appropriate content for health interventions as well as the process community members preferred for intervention delivery.

Beginning a partnership with PhotoVoice to explore environmental health and health inequities in minority communities.

Research informs action, but the challenge is its translation into practice. The 2012-2017 National Institute of Environmental Health Sciences Strategic Plan emphasizes partnership with community stakeholders to capture critical missing information about the effects of environment on health and to improve translation of study results, a daunting task for many traditionally-trained researchers. To better understand economic and neighborhood context consistent with these goals as well as existing inequities, we needed access to a highly affected community to inform and participate in our research. Our team therefore undertook a PhotoVoice project as a first step in establishing a participatory partnership and to appreciate the lived experiences of and build trust with youth visiting an urban community center in a high-risk, low-income, African American neighborhood located along a busy, polluted interstate. Ten 8-13 years-olds represented their community's perspectives through photographs over 14-weeks using structured questioning. Five themes emerged: poor eating habits/inadequate nutrition; safety/violence; family/friends/community support; future hopes/dreams; and garbage/environment. Public viewings of the photos/captions facilitated engagement of other community agencies and multidisciplinary academic faculties to work together to build a sustainable "community collaboratory" that will promote health at the center by providing families knowledge/skills to prevent/minimize environmental exposures via diet/lifestyle changes using community-engaged, citizen scientist and systems thinking approaches.

Calling all stakeholders: group-level assessment (GLA)-a qualitative and participatory method for large groups.

Group-level assessment (GLA) is a qualitative and participatory large group method in which timely and valid data are collaboratively generated and interactively evaluated with relevant stakeholders leading to the development of participant-driven data and relevant action plans. This method is useful across a wide range of evaluation purposes in many environments. GLA involves bringing a large group of participants together to build a common database through the co-identification of relevant needs, judgments, and priorities. The GLA process proceeds through the following seven steps: climate setting, generating, appreciating, reflecting, understanding, selecting, and action. This article describes the methodological development and process of conducting a GLA and its various applications across the evaluation spectrum. We highlight several exemplars where GLA was used in order to demonstrate the particular nuances of working with different sizes and types of groups and to elaborate on our learnings from the wide applicability of the method.

Understanding the experiences of youth living with sickle cell disease: a photovoice pilot.

A Photovoice pilot was conducted with youth living with sickle cell disease (SCD), in order to further understand their lived experience and examine the acceptability, feasibility, and utility of this method in this population. SCD is an inherited genetic condition whose primary symptom is severe pain. Youth were able to reflect on their experiences with SCD using Photovoice and the adapted SHOWeD method. Parents and youth found Photovoice to be valuable for children and adolescents with SCD. Emerging themes included the impact of SCD, the importance of everyday activities and interests, and the importance of family and support.

The use of concept mapping to identify community-driven intervention strategies for physical and mental health.

Research that partners with youth and community stakeholders increases contextual relevance and community buy-in and therefore maximizes the chance for intervention success. Concept mapping is a mixed-method participatory research process that accesses the input of the community in a collaborative manner. After a school-wide health needs assessment at a low-income, minority/immigrant K-8 school identified bullying and obesity as the most important health issues, concept mapping was used to identify and prioritize specific strategies to address these two areas. Stakeholders including 160 K-8 students, 33 college students working in the school, 35 parents, 20 academic partners, and 22 teachers/staff brainstormed strategies to reduce and prevent obesity and bullying. A smaller group of stakeholders worked individually to complete an unstructured sorting of these strategies into groups of similar ideas, once for obesity and again for bullying. Multidimensional scaling and cluster analysis was applied to the sorting data to produce a series of maps that illustrated the stakeholders' conceptual thinking about obesity and bullying prevention strategies. The maps for both obesity and bullying organized specific strategies into themes that included education, parental role, teacher/school supervision, youth role, expert/professional role, and school structure/support.