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Creating Culturally Adapted Multilingual Materials for Research

Coffin, Alyssa; Elder, Brynn; Luercio, Marcella; Ahuja, Namrata; Barber, Rebecca; DeCamp, Lisa Ross; Encalada, Karen; Fan, Angela L; Farkas, Jonathan S; Jain, Pia; Johnson, Tyler M; Mallick, Nandini; Wilder, Jayme L; Yang, Tracy J; Yin, H Shonna; Lion, K Casey; Khan, Alisa
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 ∼6 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.
PMID: 38860305
ISSN: 1098-4275
CID: 5668922

The Injury Prevention Program to Reduce Early Childhood Injuries: A Cluster Randomized Trial

Perrin, Eliana M; Skinner, Asheley C; Sanders, Lee M; Rothman, Russell L; Schildcrout, Jonathan S; Bian, Aihua; Barkin, Shari L; Coyne-Beasley, Tamera; Delamater, Alan M; Flower, Kori B; Heerman, William J; Steiner, Michael J; Yin, H Shonna
BACKGROUND AND OBJECTIVES/OBJECTIVE:The American Academy of Pediatrics designed The Injury Prevention Program (TIPP) in 1983 to help pediatricians prevent unintentional injuries, but TIPP's effectiveness has never been formally evaluated. We sought to evaluate the impact of TIPP on reported injuries in the first 2 years of life. METHODS:We conducted a stratified, cluster-randomized trial at 4 academic medical centers: 2 centers trained their pediatric residents and implemented TIPP screening and counseling materials at all well-child checks (WCCs) for ages 2 to 24 months, and 2 centers implemented obesity prevention. At each WCC, parents reported the number of child injuries since the previous WCC. Proportional odds logistic regression analyses with generalized estimating equation examined the extent to which the number of injuries reported were reduced at TIPP intervention sites compared with control sites, adjusting for baseline child, parent, and household factors. RESULTS:A total of 781 parent-infant dyads (349 TIPP; 432 control) were enrolled and had sufficient data to qualify for analyses: 51% Hispanic, 28% non-Hispanic Black, and 87% insured by Medicaid. Those at TIPP sites had significant reduction in the adjusted odds of reported injuries compared with non-TIPP sites throughout the follow-up (P = .005), with adjusted odds ratios (95% CI) of 0.77 (0.66-0.91), 0.60 (0.44-0.82), 0.32 (0.16-0.62), 0.26 (0.12-0.53), and 0.27 (0.14-0.52) at 4, 6, 12, 18, and 24 months, respectively. CONCLUSIONS:In this cluster-randomized trial with predominantly low-income, Hispanic, and non-Hispanic Black families, TIPP resulted in a significant reduction in parent-reported injuries. Our study provides evidence for implementing the American Academy of Pediatrics' TIPP in routine well-child care.
PMCID:11035157
PMID: 38557871
ISSN: 1098-4275
CID: 5655672

Pediatrician perspectives on barriers and facilitators to discharge instruction comprehension and adherence for parents of children with medical complexity

Glick, Alexander F; Yin, H Shonna; Silva, Benjamin; Modi, Avani C; Huynh, Vincent; Goodwin, Emily J; Farkas, Jonathan S; Turock, Julia S; Famiglietti, Hannah S; Dickson, Victoria V
BACKGROUND:High rates of posthospitalization errors are observed in children with medical complexity (CMC). Poor parent comprehension of and adherence to complex discharge instructions can contribute to errors. Pediatrician views on common barriers and facilitators to parent comprehension and adherence are understudied. OBJECTIVE:To examine pediatrician perspectives on barriers and facilitators experienced by parents in comprehension of and adherence to inpatient discharge instructions for CMC. DESIGN, SETTINGS, AND PARTICIPANTS/METHODS:We conducted a qualitative, descriptive study of attending pediatricians (n = 20) caring for CMC in inpatient settings (United States and Canada) and belonging to listservs for pediatric hospitalists/complex care providers. We used purposive/maximum variation sampling to ensure heterogeneity (e.g., hospital, region). MAIN OUTCOME AND MEASURES/METHODS:A multidisciplinary team designed and piloted a semistructured interview guide with pediatricians who care for CMC. Team members conducted semistructured interviews via phone or video call. Interviews were audiorecorded and transcribed. We analyzed transcripts using content analysis; codes were derived a priori from a conceptual framework (based on the Pediatric Self-Management Model) and a preliminary transcript analysis. We applied codes and identified emerging themes. RESULTS:Pediatricians identified three themes as barriers and facilitators to discharge instruction comprehension and adherence: (1) regimen complexity, (2) access to the healthcare team (e.g., inpatient team, outpatient pediatrician, home nursing) and resources (e.g., medications, medical equipment), and (3) need for a family centered and health literacy-informed approach to discharge planning and education. Next steps include the assessment of parent perspectives on barriers and facilitators to discharge instruction comprehension and adherence for prents of CMC and the development of intervention strategies.
PMCID:10987266
PMID: 38445808
ISSN: 1553-5606
CID: 5670152

Implementing a Family-Centered Rounds Intervention Using Novel Mentor-Trios

Khan, Alisa; Patel, Shilpa J; Anderson, Michele; Baird, Jennifer D; Johnson, Tyler M; Liss, Isabella; Graham, Dionne A; Calaman, Sharon; Fegley, April E; Goldstein, Jenna; O'Toole, Jennifer K; Rosenbluth, Glenn; Alminde, Claire; Bass, Ellen J; Bismilla, Zia; Caruth, Monique; Coghlan-McDonald, Sally; Cray, Sharon; Destino, Lauren A; Dreyer, Benard P; Everhart, Jennifer L; Good, Brian P; Guiot, Amy B; Haskell, Helen; Hepps, Jennifer H; Knighton, Andrew J; Kocolas, Irene; Kuzma, Nicholas C; Lewis, Kheyandra; Litterer, Katherine P; Kruvand, Elizabeth; Markle, Peggy; Micalizzi, Dale A; Patel, Aarti; Rogers, Jayne E; Subramony, Anupama; Vara, Tiffany; Yin, H Shonna; Sectish, Theodore C; Srivastava, Rajendu; Starmer, Amy J; West, Daniel C; Spector, Nancy D; Landrigan, Christopher P; ,
BACKGROUND AND OBJECTIVES/OBJECTIVE:Patient and Family Centered I-PASS (PFC I-PASS) emphasizes family and nurse engagement, health literacy, and structured communication on family-centered rounds organized around the I-PASS framework (Illness severity-Patient summary-Action items-Situational awareness-Synthesis by receiver). We assessed adherence, safety, and experience after implementing PFC I-PASS using a novel "Mentor-Trio" implementation approach with multidisciplinary parent-nurse-physician teams coaching sites. METHODS:Hybrid Type II effectiveness-implementation study from 2/29/19-3/13/22 with ≥3 months of baseline and 12 months of postimplementation data collection/site across 21 US community and tertiary pediatric teaching hospitals. We conducted rounds observations and surveyed nurses, physicians, and Arabic/Chinese/English/Spanish-speaking patients/parents. RESULTS:We conducted 4557 rounds observations and received 2285 patient/family, 1240 resident, 819 nurse, and 378 attending surveys. Adherence to all I-PASS components, bedside rounding, written rounds summaries, family and nurse engagement, and plain language improved post-implementation (13.0%-60.8% absolute increase by item), all P < .05. Except for written summary, improvements sustained 12 months post-implementation. Resident-reported harms/1000-resident-days were unchanged overall but decreased in larger hospitals (116.9 to 86.3 to 72.3 pre versus early- versus late-implementation, P = .006), hospitals with greater nurse engagement on rounds (110.6 to 73.3 to 65.3, P < .001), and greater adherence to I-PASS structure (95.3 to 73.6 to 72.3, P < .05). Twelve of 12 measures of staff safety climate improved (eg, "excellent"/"very good" safety grade improved from 80.4% to 86.3% to 88.0%), all P < .05. Patient/family experience and teaching were unchanged. CONCLUSIONS:Hospitals successfully used Mentor-Trios to implement PFC I-PASS. Family/nurse engagement, safety climate, and harms improved in larger hospitals and hospitals with better nurse engagement and intervention adherence. Patient/family experience and teaching were not affected.
PMID: 38164122
ISSN: 1098-4275
CID: 5627932

Changes in Provider Perceptions and Practices Regarding Dosing Units for Oral Liquid Medications

Lind, Jennifer N; Lovegrove, Maribeth C; Paul, Ian M; Yin, Hsiang Shonna; Budnitz, Daniel S
OBJECTIVE:A 2015 survey of primary care providers (PCPs) found that while many believed that milliliter (mL)-only dosing was safest for oral liquid medications, few would use mL alone in dosing instructions. Since 2015, many recommendations have promoted "mL-only" dosing. In 2019, a follow-up survey was conducted to assess if PCP perceptions and practices have changed. METHODS:Pediatricians, family medicine physicians, nurse practitioners, and internists participating in the 2015 and 2019 DocStyles cross-sectional, web-based surveys were asked about their perceptions and practices regarding dosing units for oral liquid medications. RESULTS:In 2019, among 1392 respondents, the proportion of PCPs who reported they believed using mL-only is the safest dosing instruction ranged from 55.1% of internists to 80.8% of pediatricians. While fewer PCPs believed patients/caregivers prefer dosing instructions in mL-only (23.9% of nurse practitioners to 48.4% of pediatricians), more held this belief in 2019 compared to 2015; pediatricians had the greatest absolute increase (+14.4%) and family medicine physicians had the smallest increase (+1.3%). While 61.6% of pediatricians reported they would use mL-only dosing, only 36.0% of internists, 36.6% of nurse practitioners, and 42.5% of family medicine physicians reported they would do so. After controlling for age, gender, region, and specialty, 2019 PCP survey participants were more likely to report that they would use mL-only dosing compared to 2015 participants (adjusted odds ratio 1.51, 95% confidence interval 1.29-1.77). CONCLUSIONS:Broader educational efforts may be necessary to reach nonpediatricians, to encourage prescribing and communication with patients/caregivers using mL-only dosing.
PMCID:10919552
PMID: 37666391
ISSN: 1876-2867
CID: 5669992

Researching COVID to enhance recovery (RECOVER) pediatric study protocol: Rationale, objectives and design

Gross, Rachel S; Thaweethai, Tanayott; Rosenzweig, Erika B; Chan, James; Chibnik, Lori B; Cicek, Mine S; Elliott, Amy J; Flaherman, Valerie J; Foulkes, Andrea S; Gage Witvliet, Margot; Gallagher, Richard; Gennaro, Maria Laura; Jernigan, Terry L; Karlson, Elizabeth W; Katz, Stuart D; Kinser, Patricia A; Kleinman, Lawrence C; Lamendola-Essel, Michelle F; Milner, Joshua D; Mohandas, Sindhu; Mudumbi, Praveen C; Newburger, Jane W; Rhee, Kyung E; Salisbury, Amy L; Snowden, Jessica N; Stein, Cheryl R; Stockwell, Melissa S; Tantisira, Kelan G; Thomason, Moriah E; Truong, Dongngan T; Warburton, David; Wood, John C; Ahmed, Shifa; Akerlundh, Almary; Alshawabkeh, Akram N; Anderson, Brett R; Aschner, Judy L; Atz, Andrew M; Aupperle, Robin L; Baker, Fiona C; Balaraman, Venkataraman; Banerjee, Dithi; Barch, Deanna M; Baskin-Sommers, Arielle; Bhuiyan, Sultana; Bind, Marie-Abele C; Bogie, Amanda L; Bradford, Tamara; Buchbinder, Natalie C; Bueler, Elliott; Bükülmez, Hülya; Casey, B J; Chang, Linda; Chrisant, Maryanne; Clark, Duncan B; Clifton, Rebecca G; Clouser, Katharine N; Cottrell, Lesley; Cowan, Kelly; D'Sa, Viren; Dapretto, Mirella; Dasgupta, Soham; Dehority, Walter; Dionne, Audrey; Dummer, Kirsten B; Elias, Matthew D; Esquenazi-Karonika, Shari; Evans, Danielle N; Faustino, E Vincent S; Fiks, Alexander G; Forsha, Daniel; Foxe, John J; Friedman, Naomi P; Fry, Greta; Gaur, Sunanda; Gee, Dylan G; Gray, Kevin M; Handler, Stephanie; Harahsheh, Ashraf S; Hasbani, Keren; Heath, Andrew C; Hebson, Camden; Heitzeg, Mary M; Hester, Christina M; Hill, Sophia; Hobart-Porter, Laura; Hong, Travis K F; Horowitz, Carol R; Hsia, Daniel S; Huentelman, Matthew; Hummel, Kathy D; Irby, Katherine; Jacobus, Joanna; Jacoby, Vanessa L; Jone, Pei-Ni; Kaelber, David C; Kasmarcak, Tyler J; Kluko, Matthew J; Kosut, Jessica S; Laird, Angela R; Landeo-Gutierrez, Jeremy; Lang, Sean M; Larson, Christine L; Lim, Peter Paul C; Lisdahl, Krista M; McCrindle, Brian W; McCulloh, Russell J; McHugh, Kimberly; Mendelsohn, Alan L; Metz, Torri D; Miller, Julie; Mitchell, Elizabeth C; Morgan, Lerraughn M; Müller-Oehring, Eva M; Nahin, Erica R; Neale, Michael C; Ness-Cochinwala, Manette; Nolan, Sheila M; Oliveira, Carlos R; Osakwe, Onyekachukwu; Oster, Matthew E; Payne, R Mark; Portman, Michael A; Raissy, Hengameh; Randall, Isabelle G; Rao, Suchitra; Reeder, Harrison T; Rosas, Johana M; Russell, Mark W; Sabati, Arash A; Sanil, Yamuna; Sato, Alice I; Schechter, Michael S; Selvarangan, Rangaraj; Sexson Tejtel, S Kristen; Shakti, Divya; Sharma, Kavita; Squeglia, Lindsay M; Srivastava, Shubika; Stevenson, Michelle D; Szmuszkovicz, Jacqueline; Talavera-Barber, Maria M; Teufel, Ronald J; Thacker, Deepika; Trachtenberg, Felicia; Udosen, Mmekom M; Warner, Megan R; Watson, Sara E; Werzberger, Alan; Weyer, Jordan C; Wood, Marion J; Yin, H Shonna; Zempsky, William T; Zimmerman, Emily; Dreyer, Benard P; ,
IMPORTANCE/OBJECTIVE:The prevalence, pathophysiology, and long-term outcomes of COVID-19 (post-acute sequelae of SARS-CoV-2 [PASC] or "Long COVID") in children and young adults remain unknown. Studies must address the urgent need to define PASC, its mechanisms, and potential treatment targets in children and young adults. OBSERVATIONS/METHODS:We describe the protocol for the Pediatric Observational Cohort Study of the NIH's REsearching COVID to Enhance Recovery (RECOVER) Initiative. RECOVER-Pediatrics is an observational meta-cohort study of caregiver-child pairs (birth through 17 years) and young adults (18 through 25 years), recruited from more than 100 sites across the US. This report focuses on two of four cohorts that comprise RECOVER-Pediatrics: 1) a de novo RECOVER prospective cohort of children and young adults with and without previous or current infection; and 2) an extant cohort derived from the Adolescent Brain Cognitive Development (ABCD) study (n = 10,000). The de novo cohort incorporates three tiers of data collection: 1) remote baseline assessments (Tier 1, n = 6000); 2) longitudinal follow-up for up to 4 years (Tier 2, n = 6000); and 3) a subset of participants, primarily the most severely affected by PASC, who will undergo deep phenotyping to explore PASC pathophysiology (Tier 3, n = 600). Youth enrolled in the ABCD study participate in Tier 1. The pediatric protocol was developed as a collaborative partnership of investigators, patients, researchers, clinicians, community partners, and federal partners, intentionally promoting inclusivity and diversity. The protocol is adaptive to facilitate responses to emerging science. CONCLUSIONS AND RELEVANCE/CONCLUSIONS:RECOVER-Pediatrics seeks to characterize the clinical course, underlying mechanisms, and long-term effects of PASC from birth through 25 years old. RECOVER-Pediatrics is designed to elucidate the epidemiology, four-year clinical course, and sociodemographic correlates of pediatric PASC. The data and biosamples will allow examination of mechanistic hypotheses and biomarkers, thus providing insights into potential therapeutic interventions. CLINICAL TRIALS.GOV IDENTIFIER/BACKGROUND:Clinical Trial Registration: http://www.clinicaltrials.gov. Unique identifier: NCT05172011.
PMCID:11075869
PMID: 38713673
ISSN: 1932-6203
CID: 5658342

Prenatal Risks to Healthy Food Access and High Birthweight Outcomes

Duh-Leong, Carol; Perrin, Eliana M; Heerman, William J; Schildcrout, Jonathan S; Wallace, Shelby; Mendelsohn, Alan L; Lee, David C; Flower, Kori B; Sanders, Lee M; Rothman, Russell L; Delamater, Alan M; Gross, Rachel S; Wood, Charles; Yin, Hsiang Shonna
OBJECTIVE:Infants with high birthweight have increased risk for adverse outcomes at birth and across childhood. Prenatal risks to healthy food access may increase odds of high birthweight. We tested whether having a poor neighborhood food environment and/or food insecurity had associations with high birthweight. METHODS:We analyzed cross-sectional baseline data in Greenlight Plus, an obesity prevention trial across six US cities (n = 787), which included newborns with a gestational age greater than 34 weeks and a birthweight greater than 2500 g. We assessed neighborhood food environment using the Place-Based Survey and food insecurity using the US Household Food Security Module. We performed logistic regression analyses to assess the individual and additive effects of risk factors on high birthweight. We adjusted for potential confounders: infant sex, race, ethnicity, gestational age, birthing parent age, education, income, and study site. RESULTS:Thirty-four percent of birthing parents reported poor neighborhood food environment and/or food insecurity. Compared to those without food insecurity, food insecure families had greater odds of delivering an infant with high birthweight (adjusted odds ratios [aOR] 1.96, 95% confidence intervals [CI]: 1.01, 3.82) after adjusting for poor neighborhood food environment, which was not associated with high birthweight (aOR 1.35, 95% CI: 0.78, 2.34). Each additional risk to healthy food access was associated with a 56% (95% CI: 4%-132%) increase in high birthweight odds. CONCLUSIONS:Prenatal risks to healthy food access may increase high infant birthweight odds. Future studies designed to measure neighborhood factors should examine infant birthweight outcomes in the context of prenatal social determinants of health.
PMID: 37659601
ISSN: 1876-2867
CID: 5618142

Management of Discharge Instructions for Children With Medical Complexity: A Systematic Review

Glick, Alexander F; Farkas, Jonathan S; Magro, Juliana; Shah, Aashish V; Taye, Mahdi; Zavodovsky, Volmir; Rodriguez, Rachel Hughes; Modi, Avani C; Dreyer, Benard P; Famiglietti, Hannah; Yin, H Shonna
CONTEXT/BACKGROUND:Children with medical complexity (CMC) are at risk for adverse outcomes after discharge. Difficulties with comprehension of and adherence to discharge instructions contribute to these errors. Comprehensive reviews of patient-, caregiver-, provider-, and system-level characteristics and interventions associated with discharge instruction comprehension and adherence for CMC are lacking. OBJECTIVE:To systematically review the literature related to factors associated with comprehension of and adherence to discharge instructions for CMC. DATA SOURCES/METHODS:PubMed/Medline, Embase, Cochrane Central Register of Controlled Trials, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Web of Science (database initiation until March 2023), and OAIster (gray literature) were searched. STUDY SELECTION/METHODS:Original studies examining caregiver comprehension of and adherence to discharge instructions for CMC (Patient Medical Complexity Algorithm) were evaluated. DATA EXTRACTION/METHODS:Two authors independently screened titles/abstracts and reviewed full-text articles. Two authors extracted data related to study characteristics, methodology, subjects, and results. RESULTS:Fifty-one studies were included. More than half were qualitative or mixed methods studies. Few interventional studies examined objective outcomes. More than half of studies examined instructions for equipment (eg, tracheostomies). Common issues related to access, care coordination, and stress/anxiety. Facilitators included accounting for family context and using health literacy-informed strategies. LIMITATIONS/CONCLUSIONS:No randomized trials met inclusion criteria. Several groups (eg, oncologic diagnoses, NICU patients) were not examined in this review. CONCLUSIONS:Multiple factors affect comprehension of and adherence to discharge instructions for CMC. Several areas (eg, appointments, feeding tubes) were understudied. Future work should focus on design of interventions to optimize transitions.
PMCID:10598634
PMID: 37846504
ISSN: 1098-4275
CID: 5605632

Pediatric Resident Communication of Hospital Discharge Instructions

Glick, Alexander F; Farkas, Jonathan S; Gadhavi, Jasmine; Mendelsohn, Alan L; Schulick, Nicole; Yin, H Shonna
OBJECTIVE:Suboptimal provider-parent communication contributes to poor parent comprehension of pediatric discharge instructions, which can lead to adverse outcomes. Residency is a critical window to acquire and learn to utilize key communication skills, potentially supported by formal training programs or visual reminders. Few studies have examined resident counseling practices or predictors of counseling quality. Our objectives were to (1) examine pediatric resident counseling practices and (2) determine how formal training and presence of discharge templates with domain-specific prompts are associated with counseling. METHODS:). Predictor variables were (1) formal discharge-related training (e.g., lectures) and (2) hospital discharge instruction template with space for individual domains. Logistic regression analyses, utilizing generalized estimating equations when appropriate to account for multiple domains (adjusting for resident gender, postgraduate year), were performed. KEY RESULTS/RESULTS:= 317) (13.9%) reported formal training. Over 25% of residents infrequently counsel on side effects, diagnosis, and restrictions. Resident reported use of communication strategies was infrequent: drawing pictures (24.1%), demonstration (15.8%), Teach Back (36.8%), Show Back (11.4%). Designated spaces in instruction templates for individual domains were associated with frequent domain-specific counseling (adjusted odds ratio [aOR] 4.1 [95% confidence interval: 3.5-4.8]). Formal training was associated with frequent Teach Back (aOR 2.6 [1.4-5.1]) and Show Back (aOR 2.7 [1.2-6.2]). CONCLUSIONS:
PMCID:10561625
PMID: 37812910
ISSN: 2474-8307
CID: 5605612

Addressing Health Literacy in Pediatric Practice: A Health Equity Lens

Stewart, Tiffany A; Perrin, Eliana M; Yin, Hsiang Shonna
Low health literacy has been linked to worse child health-related knowledge, behaviors, and outcomes across multiple health domains. As low health literacy is highly prevalent and an important mediator of income- and race/ethnicity-associated disparities, provider adoption of health literacy best practices advances health equity. A multidisciplinary effort involving all providers engaged in communication with families should include a universal precautions approach, with clear communication strategies employed with all patients, and advocacy for health system change.
PMID: 37422312
ISSN: 1557-8240
CID: 5536952