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Patients who speak languages other than English are frequently excluded from research. This exclusion exacerbates inequities, biases results, and may violate federal regulations and research ethics. Language justice is the right to communicate in an individual's preferred language to address power imbalances and promote equity. To promote language justice in research, we propose a method to translate and culturally-adapt multifaceted research materials into multiple languages simultaneously. Our method involves a multistep approach, including professional translation, review by bilingual expert panels to refine and reach consensus, and piloting or cognitive interviews with patients and families. Key differences from other translation approaches (eg, the World Health Organization) include omitting back-translation, given its limited utility in identifying translation challenges, and limiting expert panelist and piloting-participant numbers for feasibility. We detail a step-by-step approach to operationalizing this method and outline key considerations learned after utilizing this method to translate materials into 8 languages other than English for an ongoing multicenter pediatric research study on family safety-reporting. Materials included family brochures, surveys, and intervention materials. This approach took â¼6 months overall at a cost of <$2000 per language (not including study personnel costs). Key themes across the project included (1) tailor scope to timeline, budget, and resources, (2) thoughtfully design English source materials, (3) identify and apply guiding principles throughout the translation and editing process, and (4) carefully review content and formatting to account for nuances across multiple languages. This method balances feasibility and rigor in translating participant-facing materials into multiple languages simultaneously, advancing language justice in research.
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Multilingüismo , Humanos , Traducción , Investigación Biomédica/ética , NiñoRESUMEN
PURPOSE OF REVIEW: This review provides a critical assessment of recent pediatric population health research with a specific focus on child health equity. The review addresses: the role of the healthcare sector in addressing fundamental social drivers of health, challenges within healthcare organizations in addressing health-related social needs and the social determinants of health, and the rationale for incorporating race and racism in pediatric population health research and practice. RECENT FINDINGS: The coronavirus disease 2019 pandemic brought greater attention to the disparities and inequities in American health and healthcare. In response to these stark inequities, many health systems are adopting efforts and initiatives to address social needs, social determinants of health, racism, and health equity. However, empirical evaluation detailing the effectiveness of these interventions and initiatives is limited. SUMMARY: While attention to identifying social needs among pediatric populations is increasing, there is limited evidence regarding the effectiveness of these interventions in producing sustained reductions in health disparities. To advance child health equity, researchers should move beyond individual behavior modification and directly examine fundamental drivers of health inequities. These drivers include government and health policies as well as societal forces such as systemic racism.
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COVID-19 , Equidad en Salud , Humanos , Niño , Determinantes Sociales de la Salud , COVID-19/epidemiología , COVID-19/prevención & control , Inequidades en Salud , Atención a la SaludRESUMEN
Purpose: Few family-oriented cardiovascular risk reduction interventions exist that leverage the home environment to produce health behavior change among multiple family members. We identified opportunities to adapt disease self-management interventions included in a blood pressure control comparative effectiveness trial for hypertensive African American adults to address family-level factors. Methods: We conducted and analyzed semi-structured interviews with five intervention study staff (all study interventionists and the study coordinator) between December 2016 and January 2017 and with 11 study participants between September and November 2015.1 All study staff involved with intervention delivery and coordination were interviewed. We sampled adult participants from the parent study, and we analyzed interviews that were originally obtained as part of a previous study based on their status as a caregiver of an adolescent family member. Results: Thematic analysis identified family influences on disease management and the importance of relationships between index patients and family members, between index patients and study peers, and between index patients and study staff through study participation to understand social effects on healthy behaviors. We identified four themes: 1) the role of family in health behavior change; 2) the impact of family dynamics on health behaviors; 3) building peer relationships through intervention participation; and 4) study staff role conflict. Conclusions: These findings inform development of family-oriented interventions to improve health behaviors among African American index patients at high risk for cardiovascular disease and their family members.
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Negro o Afroamericano , Familia , Conductas Relacionadas con la Salud , Hipertensión/prevención & control , Apoyo Social , Presión Sanguínea , Relaciones Familiares , Femenino , Humanos , Relaciones Interpersonales , Entrevistas como Asunto , Masculino , Grupo Paritario , Pobreza , Investigación Cualitativa , Conducta de Reducción del Riesgo , AutomanejoRESUMEN
Background: Despite improvements in cardiovascular disease (CVD) prevention and treatment, low-income African Americans experience disparities in CVD-related morbidity and mortality. Childhood obesity disparities and poor diet and physical activity behaviors contribute to CVD disparities throughout the life course. Given the potential for intergenerational transmission of CVD risk, it is important to determine whether adult disease management interventions could be modified to achieve family-level benefits and improve primary prevention among high-risk youth. Objective: To explore mechanisms by which African-American adults' (referred to as index patients) participation in a hypertension disease management trial influences adolescent family members' (referred to as adolescents) lifestyle behaviors. Design/Methods: The study recruited index patients from the Achieving blood pressure Control Together (ACT) study who reported living with an adolescent ages 12-17 years old. Index patients and adolescents were recruited for in-depth interviews and were asked about any family-level changes to diet and physical activity behaviors during or after participation in the ACT study. If family-level changes were described, index patients and adolescents were asked whether role modeling, changes in the home food environment, meal preparation, and family functioning contributed to these changes. These mechanisms were hypothesize to be important based on existing research suggesting that parental involvement in childhood obesity interventions influences child and adolescent weight status. Thematic content analysis of transcribed interviews identified both a priori and emergent themes. Results: Eleven index patients and their adolescents participated in in-depth interviews. Index patients and adolescents both described changes to the home food environment and meal preparation. Role modeling was salient to index patients, particularly regarding healthy eating behaviors. Changes in family functioning due to study participation were not endorsed by index patients or adolescents. Emergent themes included adolescent care-taking of index patients and varying perceptions by index patients of their influence on adolescents' health behaviors. Conclusions: Our findings suggest that disease management interventions directed at high-risk adult populations may influence adolescent family members' health behaviors. We find support for the hypotheses that role modeling and changes to the home food environment are mechanisms by which family-level health behavior change occurs. Adolescents' roles as caretakers for index patients emerged as another potential mechanism. Future research should explore these mechanisms and ways to leverage disease management to support both adult and adolescent health behavior change.