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.

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.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.

BACKGROUND: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Increasing representation and diversity in health research: A protocol of the MYHealth research training program for high school students.

BACKGROUND: Despite decades of calls for increased diversity in the health research workforce, disparities exist for many populations, including Black, Indigenous, and People of Color individuals, those from low-income families, and first-generation college students. To increase representation of historically marginalized populations, there is a critical need to develop programs that strengthen their path toward health research careers. High school is a critically important time to catalyze interest and rebuild engagement among youth who may have previously felt excluded from science, technology, engineering, and mathematics (STEM) and health research careers. METHODS: The overall objective of the MYHealth program is to engage high school students in a community-based participatory research program focused on adolescent health. Investigators will work alongside community partners to recruit 9th through 12th graders who self-identify as a member of a group underrepresented in STEM or health research careers (e.g., based on race and ethnicity, socioeconomic status, first generation college student, disability, etc.). MYHealth students are trained to be co-researchers who work alongside academic researchers, which will help them to envision themselves as scientists capable of positively impacting their communities through research. Implemented in three phases, the MYHealth program aims to foster a continuing interest in health research careers by developing: 1) researcher identities, 2) scientific literacy, 3) scientific self-efficacy, and 4) teamwork and leadership self-efficacy. In each phase, students will build knowledge and skills in research, ethics, data collection, data analysis, and dissemination. Students will directly collaborate with and be mentored by a team that includes investigators, community advisors, scientific advisors, and youth peers. DISCUSSION: Each year, a new cohort of up to 70 high school students will be enrolled in MYHealth. We anticipate the MYHealth program will increase interest and persistence in STEM and health research among groups that have been historically excluded in health research careers.

Providers' Perspectives on Decision-Making About Care for Transgender Youth.

Background: Transgender and gender-diverse (TGD) youth face health care decisions that are complicated by both social and medical aspects of gender care. Little is known about how providers support decision-making in this context or the gaps they perceive in decision support. Objective: To explore health care providers' perspectives on the decision-making processes in youth gender care. Methods: We interviewed health care providers (n=17) caring for TGD youth and asked about the nature of families' decision-making, providers' role in this process, and potential improvements to existing support systems. Two independent coders coded all responses which were analyzed using thematic analysis. Results: From providers' perspectives, they serve as "guides" to families through a challenging decision-making process. Youth arrive educated and eager to begin treatment, but caregivers are more hesitant. Providers lack data to address parents' concerns, and struggle to support families through interpersonal conflict. All providers recognized a need to improve decision support for families. Conclusions: Providers described decision-making in this context as a multistep process where interpersonal conflict and limited data slow progress. Practice Implications: There is ample opportunity to leverage insights from adult and pediatric medical decision-making research to improve decision support for providers, TGD youth, and families.

Improving access to palliative care for people experiencing socioeconomic inequities: findings from a community-based pilot research study. / Améliorer l'accès aux soins palliatifs pour les personnes confrontées à des iniquités socioéconomiques : conclusions d'une étude pilote de recherche communautaire.

INTRODUCTION: In Canada, people experiencing socioeconomic inequities have higher rates of late diagnosis and lower survival rates than the general population. Palliative care services focussed on this population are scarce. We developed a community-based nursing intervention to improve access to palliative care for people experiencing socioeconomic inequities and living with life-limiting illnesses in an urban Canadian setting. METHODS: This community-based, qualitative research study combined critical and participatory research methodologies. The study was conducted in partnership with the Palliative Care Outreach Advocacy Team (PCOAT) based in Edmonton, Alberta, a team dedicated to serving populations experiencing socioeconomic inequities who require palliative care. Following an exploratory phase that served to delineate the intervention, we undertook a one-year pilot implementation during which a part-time registered nurse (RN) joined PCOAT. The RN engaged in trust building, resolution of health and practical needs and complex care coordination. Twenty-five patients participated in the intervention. Participants were interviewed at least once to explore their experiences with the intervention. Data were analyzed through thematic analysis. RESULTS: Most participants were men, were Indigenous and had advanced cancer. Participants had significant financial concerns, lived or had lived in precarious housing situations and had previously faced serious challenges accessing health care. Participants reported social and health needs including housing, finances, transportation, symptom control, harm reduction and end-of-life care. Participants reported improved access to health and social services and expressed satisfaction with the study intervention. CONCLUSION: Study findings suggest the study intervention may have contributed to improved access to palliative care, improved experiences for participants and increased equity in the delivery of care.

Supporting Gender-Related Medical Decision Making for Transgender and Gender-Diverse Individuals: A Scoping Review.

Purpose: Transgender and gender-diverse (TGD) individuals and their families face numerous challenging decisions. To better understand their decision processes, we conducted a scoping review of the existing literature and of decision-support tools in use at pediatric gender-care clinics. Methods: We searched PubMed, EMBASE, Scopus CINAHL, PsychINFO, and EBM Reviews for studies that were original research focused on decisions, decision making, or decision support for TGD individuals and/or their families. All studies were reviewed for inclusion by at least two researchers. Additionally, we reviewed clinical tools used to support decision making by TGD youth and their families. Results: We retrieved 3306 articles. Thirty-two met criteria for data extraction. Studies focused on three major decisions: gender-confirming surgery, fertility preservation, and gender-affirming hormone therapy. Several themes that cut across clinical topics emerged: decision-making processes, decision-making roles, and sources of decision support. Only three articles focused on decision-support interventions, two of which discussed development of support tools and one evaluated a class designed to help with surgical decision making. None of the clinical tools reviewed met criteria for a decision aid. Conclusions: There is a dearth of studies related to decision support interventions, an absence validated by the resources currently in clinical use. This scoping review suggests an opportunity for the development of tools to aid in the decision-making processes for TGD youth and their families.

Psychometric Properties of Scales Measuring Resilience in U.S. Latinx Populations: A Systematic Review.

Objectives: Instruments used to measure resilience have typically been developed in European or Anglosphere countries and emphasize personal factors of resilience. In addition to being a quickly growing ethnic minority group in the United States, Latinx individuals face unique stressors and protective factors that may contribute to resilience. This review sought to determine the extent to which instruments measuring resilience have been validated in U.S. Latinx populations and what domains of resilience those scales capture. Methods: A systematic literature review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards and included studies describing psychometric properties of resilience scales for Latinx individuals living in the United States. Articles were assessed for quality of psychometric validation; scales used in the final studies were assessed for representation of domains of the social ecological resilience model. Results: Nine studies were included in the final review examining eight separate resilience measures. The populations of these studies were heterogeneous geographically and demographically; more than half the studies only included Latinx populations as a subgroup. The breadth and quality of psychometric validation were variable across studies. The domains represented by the scales in the review most heavily assessed individual domains of resilience. Conclusion: The literature to date on psychometric validation of resilience measures in Latinx populations in the United States is limited and does not robustly capture aspects of resilience that may be particularly meaningful for Latinx populations, such as community or cultural factors. Instruments that are developed with and for Latinx populations are necessary to better understand and measure resilience in this population.

Nurse-led adult palliative care models in low- and middle-income countries: A scoping review.

AIMS: To map evidence on the nature and extent of use of nurse-led palliative care models in low- and middle-income countries serving adults with life-limiting conditions. DESIGN: A scoping review of the literature was undertaken. DATA SOURCES: A systematic search was performed from database inception to March 2022 in: Medline, EMBASE, CINAHL, Wiley Cochrane Library, SCOPUS, Web of Science, SciELO and Global Health. Main search terms included: Nurse-led AND Palliative care AND Low-and middle-income countries. Grey literature was searched from Proquest Dissertations and Theses Global, the World Health Organization and selected palliative care websites. We searched the reference list of included articles for additional studies. REVIEW METHODS: We used the framework by Arksey and O'Malley and the PRISMA-ScR guidelines. Titles and abstracts were screened by one reviewer and full text by two reviewers. Thematic analysis was used to synthesize data and results are presented descriptively using themes and categories. RESULTS: Eighteen studies were included, with majority from Sub-Saharan Africa (10/20). Three nurse-led palliative care models emerged: nurse-led empowering care, nurse-led symptom control and nurse-led multicomponent palliative care. They served particularly cancer and HIV patients and were delivered in person or by telehealth care. Reported outcomes were adherence to therapy, improved self-care ability, improved quality of life and increased access to palliative. CONCLUSIONS: The use of nurse-led palliative care in low- and middle-income countries is in its developing stages and seems feasible. Nursing roles in in low- and middle-income countries need to be expanded by developing advanced practice nurses and nurse practitioner programmes, with palliative care content. More impact evaluation studies on the use of nurse-led palliative care models in these countries are needed. IMPACT: This review highlights nurse-led care models that can enhance access and quality of life of patients with life-limiting conditions in low- and middle-income countries.

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.

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.

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.

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.

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.

A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals.

Participatory research engages community stakeholders in the research process, from problem identification and developing the research question, to dissemination of results. There is increasing recognition in the field of health research that community-engaged methods can be used throughout the research process. The volume of guidance for engaging communities and conducting participatory research has grown steadily in the past 40+ years, in many countries and contexts. Further, some institutions now require stakeholder engagement in research as a condition of funding. Interest in collaborating in the research process is also growing among patients and the public. This article provides an overview for selecting participatory research methods based on project and partnerships goals.

A scoping review of youth advisory structures in the United States: Applications, outcomes, and best practices.

Although youth advisory structures (YASs) have proliferated internationally to facilitate the voice of young people, little is known about the practices of such groups, especially in the United States. To address this gap of knowledge, this study describes the findings of a scoping review of scholarly research on YAS in the United States. The review found that although the use of YAS is increasing, current scholarship offers little information about YAS processes or how youth are engaged. Most YAS in the review partnered with marginalized young people to inform research and programming around sensitive health topics, such as human immunodeficiency virus prevention. Youth who participated in YAS experienced positive outcomes such as leadership and skill development, healthier decision-making, and confidence. Although most studies involved youth in minimal ways, there is a growing body of literature where youth are engaged in long-term partnerships that support positive youth development. This review details other key characteristics of YAS and provides recommendations for best practices, such as building consensus around terms used to refer to YAS and promoting the dissemination of process details around YAS facilitation.

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.