Creating Culturally Adapted Multilingual Materials for Research.

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.

Evaluation of Pediatric Human Papillomavirus Vaccination Provider Counseling Written Materials: A Health Literacy Perspective.

BACKGROUND AND OBJECTIVES: Despite recommendations supporting human papillomavirus (HPV) vaccination, pediatric vaccination rates remain suboptimal in the United States; lack of tools to support provider counseling is one barrier. We sought to evaluate HPV-related counseling materials for readability, suitability, and content, and assess parent perceptions of materials, using a health literacy perspective. METHODS: A systematic search was conducted for written materials developed for HPV vaccination counseling by examining state Department of Health Web sites and associated links to local and national organizations. Materials were assessed for the following: 1) readability (Flesch Reading Ease, Flesch-Kincaid, Gunning Fog, Simple Measure of Gobbledygook, Fry), 2) suitability (understandability and actionability) (Suitability Assessment of Materials; Patient Education Materials Assessment Tool for Printable Materials), and 3) coverage of 8 key content areas (recommended by Centers for Disease Control and Prevention). Semistructured interviews were conducted with English-speaking parents or caregivers of children 9 to 17 years of age from 3 pediatric clinics (New York, Ohio, Illinois) serving predominantly low-income families to assess perceptions and usefulness of 4 handouts selected for review. RESULTS: Thirty-eight documents were assessed. Mean ± standard deviation (SD) reading grade level was 9.4 ± 2; 10.5% (n = 4) had a reading level of 6th grade or below; 68.4% (n = 26) were considered not suitable. Mean understandability was 41.7% and mean actionability was 20.7%. Only 5.3% (n = 2) addressed all 8 content areas mean ± SD (number of areas = 6.7 ± 1.2). Brochure comprehensiveness and inclusion of a personal story were cited as factors that would be helpful in influencing parents to vaccinate against HPV. CONCLUSIONS: Few written materials for HPV vaccination counseling were optimal from a health literacy best practices perspective. Content comprehensiveness was important for informed decision making.

Use of a low-literacy written action plan to improve parent understanding of pediatric asthma management: A randomized controlled study.

OBJECTIVES: The objective of the study was to determine whether parents who use a low-literacy, pictogram- and photograph-based written asthma action plan (WAAP) have a better understanding of child asthma management compared to parents using a standard plan. METHODS: A randomized controlled study was carried out in 2 urban pediatric outpatient clinics. Inclusion criteria were English- and Spanish-speaking parents of 2- to 12-year-old asthmatic children. Parents were randomized to receive a low-literacy or standard asthma action plan (American Academy of Allergy, Asthma and Immunology) for a hypothetical patient on controller and rescue medications. A structured questionnaire was used to assess whether there was an error in knowledge of (1) medications to give everyday and when sick, (2) need for spacer use, and (3) appropriate emergency response to give albuterol and seek medical help. Multiple logistic regression analyses were performed, adjusting for parent age, health literacy (Newest Vital Sign); child asthma severity, medications; and site. RESULTS: 217 parents were randomized (109 intervention and 108 control). Parents who received the low-literacy plan were (1) less likely to make an error in knowledge of medications to take everyday and when sick compared to parents who received the standard plan (63.0 vs. 77.3%, p = 0.03; adjusted odds ratio [AOR] = 0.5[95% confidence interval: 0.2-0.9]) and (2) less likely to make an error regarding spacer use (14.0 vs. 51.1%, p < 0.001; AOR = 0.1 [0.06-0.3]). No difference in error in appropriate emergency response was seen (43.1 vs. 48.1%, p = 0.5). CONCLUSIONS: Use of a low-literacy WAAP was associated with better parent understanding of asthma management. Further study is needed to assess whether the use of this action plan improves child asthma outcomes.

A Low-Literacy Asthma Action Plan to Improve Provider Asthma Counseling: A Randomized Study.

BACKGROUND AND OBJECTIVES: The use of written asthma action plans (WAAPs) has been associated with reduced asthma-related morbidity, but there are concerns about their complexity. We developed a health literacy-informed, pictogram- and photograph-based WAAP and examined whether providers who used it, with no training, would have better asthma counseling quality compared with those who used a standard plan. METHODS: Physicians at 2 academic centers randomized to use a low-literacy or standard action plan (American Academy of Allergy, Asthma and Immunology) to counsel the hypothetical parent of child with moderate persistent asthma (regimen: Flovent 110 µg 2 puffs twice daily, Singulair 5 mg daily, Albuterol 2 puffs every 4 hours as needed). Two blinded raters independently reviewed counseling transcriptions. PRIMARY OUTCOME MEASURES: medication instructions presented with times of day (eg, morning and night vs number of times per day) and inhaler color; spacer use recommended; need for everyday medications, even when sick, addressed; and explicit symptoms used. RESULTS: 119 providers were randomly assigned (61 low literacy, 58 standard). Providers who used the low-literacy plan were more likely to use times of day (eg, Flovent morning and night, 96.7% vs 51.7%, P < .001; odds ratio [OR] = 27.5; 95% confidence interval [CI], 6.1-123.4), recommend spacer use (eg, Albuterol, 83.6% vs 43.1%, P < .001; OR = 6.7; 95% CI, 2.9-15.8), address need for daily medications when sick (93.4% vs 34.5%, P < .001; OR = 27.1; 95% CI, 8.6-85.4), use explicit symptoms (eg, "ribs show when breathing," 54.1% vs 3.4%, P < .001; OR = 33.0; 95% CI, 7.4-147.5). Few mentioned inhaler color. Mean (SD) counseling time was similar (3.9 [2.5] vs 3.8 [2.6] minutes, P = .8). CONCLUSIONS: Use of a low-literacy WAAP improves the quality of asthma counseling by helping providers target key issues by using recommended clear communication principles.