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.

Barriers to and Facilitators of Early Hearing Detection and Intervention in the United States: A Systematic Review.

OBJECTIVES: Early hearing detection and intervention (EHDI) is guided by the 1-3-6 approach: screening by one month, diagnosis by 3 mo, and early intervention (EI) enrollment by 6 mo. Although screening rates remain high, successful diagnosis and EI-enrollment lag in comparison. The aim of this systematic review is to critically examine and synthesize the barriers to and facilitators of EHDI that exist for families, as they navigate the journey of congenital hearing loss diagnosis and management in the United States. Understanding barriers across each and all stages is necessary for EHDI stakeholders to develop and test novel approaches which will effectively reduce barriers to early hearing healthcare. DESIGN: A systematic literature search was completed in May and August 2021 for empirical articles focusing on screening, diagnosis, and EI of children with hearing loss. Two independent reviewers completed title and abstract screening, full-text review, data extraction, and quality assessments with a third independent reviewer establishing consensus at each stage. Data synthesis was completed using the Framework Analysis approach to categorize articles into EHDI journey timepoints and individual/family-level factors versus system-level factors. RESULTS: Sixty-two studies were included in the narrative synthesis. Results revealed that both individual/family-level (e.g., economic stability, medical status of the infant including middle ear involvement) and system-level barriers (e.g., system-service capacity, provider knowledge, and program quality) hinder timely diagnosis and EI for congenital hearing loss. Specific social determinants of health were noted as barriers to effective EHDI; however, system-level facilitators such as care coordination, colocation of services, and family support programs have been shown to mitigate the negative impact of those sociodemographic factors. CONCLUSIONS: Many barriers exist for families to obtain appropriate and timely EHDI for their children, but system-level changes could facilitate the process and contribute to long-term outcomes improvement. Limitations of this study include limited generalizability due to the heterogeneity of EHDI programs and an inability to ascertain factor interactions.

Facilitating health promoting ideas and actions: participatory research in an underserved Swedish residential area.

BACKGROUND: For an intervention to contribute to decreased health gaps, people living in underserved areas must participate in the research-to-action process during the development of the intervention. The purpose of this study was to collaborate with residents living in a Swedish underserved area to generate health and wellness priorities and actions. METHODS: We applied Group Level Assessment (GLA) together with people living in a Swedish neighborhood where obesity, dental caries and other illnesses are prevalent. GLA is a qualitative, participatory methodology that is designed for a large group to generate and evaluate relevant needs and priorities within a lens of action for positive social change. Residents were recruited by posters, postcards and snowball sampling. In total, 47 residents participated. Eight GLA sessions were held over a five-month time period. RESULTS: The GLA sessions resulted in reflections, proposals and actions for change by the residents. Adolescent and parent need for support, improved communication and more meeting places were highlighted as priorities for promoting health and well-being. The results were presented for stakeholders in a report and an exhibition and some of the participants started a language café. CONCLUSIONS: GLA emphasised the participants' perspective. The participatory process helped them identify what they thought valuable and relevant concerning health issues and supported them in taking actions to achieve change.

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.

Striving for Structure and Stability in Cincinnati's Family Homeless Shelters: A Community-Based Participatory Research Approach.

Experiencing homelessness negatively impacts child health, development, and emotional-behavioral functioning, but there is limited knowledge regarding specific service priorities, as articulated by families themselves, to prevent or address these adverse sequelae. Thus, to elicit the service needs perspective of families in shelter and to translate these findings into real-world action, we undertook a community-based participatory research effort using Group-Level Assessment, a focus group methodology. An action-based participatory needs assessment called a Group-Level Assessment (GLA) was conducted in collaboration with parents currently experiencing homelessness. A total of 53 parents from 3 Cincinnati homeless shelters participated by responding to 17 to 20 open-ended prompts regarding their child's medical, developmental, learning, social, and behavioral needs. Using GLA methodology, we found that the needs expressed by families residing in shelters coalesced around the following themes: job and housing stability, education and skill development, emotional support, and improving shelter life. The GLA findings were then shared with shelter and community leaders, leading to a number of policy and practice enhancements in the shelters. This study demonstrates the power of the GLA approach to affect community action as a direct result of priorities generated by families experiencing homelessness.

Persistent, refractory, and biphasic anaphylaxis: A multidisciplinary Delphi study.

BACKGROUND: The use of inconsistent definitions for anaphylaxis outcomes limits our understanding of the natural history and epidemiology of anaphylaxis, hindering clinical practice and research efforts. OBJECTIVE: Our aim was to develop consensus definitions for clinically relevant anaphylaxis outcomes by utilizing a multidisciplinary group of clinical and research experts in anaphylaxis. METHODS: Using Delphi methodology, we developed agenda topics and drafted questions to review during monthly conference calls. Through online surveys, a 19-member panel consisting of experts in allergy and/or immunology and emergency medicine rated their level of agreement with the appropriateness of statements on a scale of 1 to 9. A median value of 1.0 to 3.4 was considered inappropriate, a median value of 3.5 to 6.9 was considered uncertain, and a median value of 7.0 to 9.0 was considered appropriate. A disagreement index was then calculated, with values less than 1.0 categorized as "consensus reached." If consensus was not reached after the initial survey, subsequent surveys incorporating the aggregate de-identified responses from prior surveys were sent to panel members. This process was repeated until consensus was reached or 4 survey rounds had been completed, after which the question was categorized as "no consensus reached." RESULTS: The panel developed outcome definitions for persistent, refractory, and biphasic anaphylaxis, as well as for persistent and biphasic nonanaphylactic reactions. There was also consensus among panel members regarding the need to develop an anaphylaxis severity grading system. CONCLUSION: Dissemination and application of these definitions in clinical care and research will help standardize the terminology used to describe anaphylaxis outcomes and serve as the foundation for future research, including research aimed at development of an anaphylaxis severity grading system.

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.

Achieving a shared vision for girls' health in a low-income community.

In response to a lack of information related to girls' health in a low-income community, an initiative was developed to create a community-wide vision for girls' health. A forum was conducted following a photovoice project to generate sustainable action steps. Forty-four participants attended the forum. Key action steps included decreasing barriers to participation in girls' programs, offering leadership roles and interpersonal communication skills for girls in the community, and engaging girls in community organizations. Integral to the forum's success were the initial photos, which provided a bridge from understanding the issues of girls' health to the development of the action steps.

Attributions of Mental Illness: An Ethnically Diverse Community Perspective.

Although the prevalence of mental illness is similar across ethnic groups, a large disparity exists in the utilization of services. Mental health attributions, causal beliefs regarding the etiology of mental illness, may contribute to this disparity. To understand mental health attributions across diverse ethnic backgrounds, we conducted focus groups with African American (n = 8; 24 %), Asian American (n = 6; 18 %), Latino/Hispanic (n = 9; 26 %), and White (n = 11; 32 %) participants. We solicited attributions about 19 mental health disorders, each representing major sub-categories of the DSM-IV. Using a grounded theory approach, participant responses were categorized into 12 themes: Biological, Normalization, Personal Characteristic, Personal Choice, Just World, Spiritual, Family, Social Other, Environment, Trauma, Stress, and Diagnosis. Results indicate that ethnic minorities are more likely than Whites to mention spirituality and normalization causes. Understanding ethnic minority mental health attributions is critical to promote treatment-seeking behaviors and inform culturally responsive community-based mental health services.

Parental tobacco screening and counseling in the pediatric emergency department: practitioners' attitudes, perceived barriers, and suggestions for implementation and maintenance.

INTRODUCTION: The pediatric emergency department (PED) is a venue that underuses parental tobacco screening and brief cessation counseling. We sought to explore PED practitioners' attitudes and perceived barriers regarding the implementation and adoption of tobacco screening/cessation counseling of parental smokers in the PED setting, as well as to solicit suggestions for improving the sustainability and maintenance of such practices. METHODS: We conducted an exploratory, qualitative study of a convenience sample of PED practitioners using the RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) framework. Individual, focused interviews were conducted to determine factors that would maximize the implementation and maintenance of parental tobacco screening and intervention counseling as standard PED practice. RESULTS: Thirty interviews were conducted from which relevant data, patterns, and themes were identified. Reach factors included targeting parental smokers with children with respiratory diseases, having adequate training of practitioners, and providing "prearranged" counseling packages. Effectiveness factors included practitioner desire for outcome data about intervention effectiveness (eg, changes in children's secondhand smoke exposure and parental quit rates). Solutions to increase intervention adoption included quick electronic health record prompts and the provision of onsite tobacco cessation experts. Implementation suggestions emphasized the importance of financial support and the alignment of tobacco screening/counseling with strategic plans. Maintenance factors included institutional and technical support, as well as the importance of intervention "champions" in the PED. DISCUSSION: By highlighting important viewpoints of practitioners regarding tobacco screening and counseling, the findings can help guide and direct the development and evaluation of sustainable interventions to facilitate tobacco use treatment in the PED.

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.

Clinician Perspectives on Continuous Monitor Use in a Children's Hospital: A Qualitative Study.

BACKGROUND AND OBJECTIVES: Variation in continuous cardiopulmonary monitor (cCPM) use across children's hospitals suggests preference-based use. We sought to understand how clinical providers make decisions to use cCPMs. METHODS: We conducted a qualitative study using semi-structed interviews with clinicians (nurses, respiratory therapists [RTs], and resident and attending physicians) from 2 hospital medicine units at a children's hospital. The interview guide employed patient cases and open-ended prompts to elicit information about workflows and decision-making related to cCPM, and we collected basic demographic information about participants. We used an inductive approach following thematic analysis to code transcripts and create themes. RESULTS: We interviewed 5 nurses, 5 RTs, 7 residents, and 7 attending physicians. We discovered that clinicians perceive a low threshold for starting cCPM, and this often occurred as a default action at admission. Clinicians thought of cCPMs as helping them cope with uncertainty. Despite acknowledging considerable flaws in how cCPMs were used, they were perceived as a low-risk intervention. Although RNs and RTs were most aware of the patient's current condition and number of alarms, physicians decided when to discontinue monitors. No structured process for identifying when to discontinue monitors existed. CONCLUSIONS: We concluded that nurses, physicians, and RTs often default to cCPM use and lack a standardized process for identifying when cCPM should be discontinued. Interventions aiming to reduce monitor use will need to account for or target these factors.

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.

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.

Youth as partners, participants or passive recipients: a review of children and adolescents in community-based participatory research (CBPR).

Community-based participatory research (CBPR) is an orientation to research that places value on equitable collaborations between community members and academic partners, reflecting shared decision making throughout the research process. Although CBPR has become increasingly popular for research with adults, youth are less likely to be included as partners. In our review of the literature, we identified 399 articles described by author or MeSH keyword as CBPR related to youth. We analyzed each study to determine youth engagement. Not including misclassified articles, 27 % of percent of studies were community-placed but lacked a community partnership and/or participatory component. Only 56 (15 %) partnered with youth in some phase of the research process. Although youth were most commonly involved in identifying research questions/priorities and in designing/conducting research, most youth-partnered projects included children or adolescents in several phases of the research process. We outline content, methodology, phases of youth partnership, and age of participating youth in each CBPR with youth project, provide exemplars of CBPR with youth, and discuss the state of the youth-partnered research literature.

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.

The Possibility and Promise of Action Research in Pediatrics: A Scoping Review.

Action research (AR) is an umbrella term encompassing a range of related research approaches and frameworks such as participatory AR, participatory research, community-based participatory research, and community-engaged research. In contrast to conventional, investigator-led research that is conducted on or about participants, AR is conducted with those who have a "stake" in the research topic. Despite growing acceptance as an established research approach, AR is noticeably limited within pediatric health care literature. Following a structured process, we conducted a scoping review to explore AR in pediatrics within the last 10 years. Twenty-eight articles met eligibility criteria. Study themes included eliciting stakeholder perspectives, improving stakeholder experiences, and developing/evaluating tools. Future AR in pediatrics should include the measurement of specific health outcomes and greater detail of the actionable steps that resulted from the research process. Action research has potential application to improve the quality and stakeholder relevance of pediatric clinical, educational, and community research.

Understanding Connections between Nature and Stress among Conservation-Engaged Adolescents Using Photovoice Methodology.

While the literature supports positive associations between nature and adolescent mental health, mechanisms are not well understood, and assessment of nature varies widely among existing studies. To partner with the most insightful informants, we enrolled eight adolescent participants from a conservation-informed summer volunteer program, applying qualitative photovoice methodology to understand their use of nature to relieve stress. Across five group sessions, participants identified four themes: (1) Nature shows us different aspects of beauty; (2) nature helps us relieve stressful experiences by balancing our senses; (3) nature gives us space to find solutions; and (4) we want to find time to enjoy nature. At the conclusion of the project, youth participants reported that the research experience was overwhelmingly positive, enlightening, and inspired appreciation of nature. We found that, while our participants unanimously reported that nature relieved their stress, prior to this project, they were not always intentional in seeking time in nature for this purpose. Through the photovoice process, these participants noted the usefulness of nature for stress relief. We conclude with recommendations for leveraging nature to decrease adolescent stress. Our findings are relevant for families, educators, students, healthcare professionals, and anyone who works with or cares for adolescents.