Exploring the lived experience of patients and families who speak language other than English (LOE) for healthcare: developing a qualitative study

Abstract Background Patients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in pediatric hospitals. Despite the knowledge that individuals who speak LOE have worse health outcomes, they are often excluded from research studies on the basis of language and there is a paucity of data on ways to address these known disparities. Our work aims to address this gap by generating knowledge to improve health outcomes for children with illness and their families with LEP. Body We describe an approach to developing a study with individuals marginalized due to using LOE for healthcare communication, specifically using semi-structured qualitative interviews. The premise of this study is participatory research—our overall goal with this systematic inquiry is to, in collaboration with patients and families with LOE, set an agenda for creating actionable change to address the health information disparities these patients and families experience. In this paper we describe our overarching study design principles, a collaboration framework in working with different stakeholders and note important considerations for study design and execution. Conclusions We have a significant opportunity to improve our engagement with marginalized populations. We also need to develop approaches to including patients and families with LOE in our research given the health disparities they experience. Further, understanding lived experience is critical to advancing efforts to address these well-known health disparities. Our process to develop a qualitative study protocol can serve as an example for engaging this patient population and can serve as a starting point for other groups who wish to develop similar research in this area. Plain English Summary Providing high-quality care that meets the needs of marginalized and vulnerable populations is important to achieving an equitable, high-quality health care system. Children and families who use a Language other than English (LOE) in English dominant regions for healthcare have worse health outcomes including a significantly increased risk of experiencing adverse events, longer lengths of stay in hospital settings, and receiving more unnecessary tests and investigations. Despite this, these individuals are often excluded from research studies and the field of participatory research has yet to meaningfully involve them. This paper aims to describe an approach to conducting research with a marginalized population of children and families due to using a LOE. We detail protocol development for a qualitative study exploring the lived experiences of patients and families who use a LOE during hospitalization. We aim to share considerations when conducting research within this population of families with LOE. We highlight learning applied from the field of patient-partner and child and family-centred research and note specific considerations for those with LOE. Developing strong partnerships and adopting a common set of research principles and collaborative framework underlies our approach and initial learnings, which we hope spark additional work in this area

Harmonization of Food-Frequency Questionnaires and Dietary Pattern Analysis in 4 Ethnically Diverse Birth Cohorts

Background: Canada is an ethnically diverse nation, which introduces challenges for health care providers tasked with providing evidence-based dietary advice. Objectives: We aimed to harmonize food-frequency questionnaires (FFQs) across 4 birth cohorts of ethnically diverse pregnant women to derive robust dietary patterns to investigate maternal and newborn outcomes. Methods: The NutriGen Alliance comprises 4 prospective birth cohorts and includes 4880 Canadian mother-infant pairs of predominantly white European [CHILD (Canadian Healthy Infant Longitudinal Development) and FAMILY (Family Atherosclerosis Monitoring In earLY life)], South Asian [START (SouTh Asian birth cohoRT)-Canada], or Aboriginal [ABC (Aboriginal Birth Cohort)] origins. CHILD used a multiethnic FFQ based on a previously validated instrument designed by the Fred Hutchinson Cancer Research Center, whereas FAMILY, START, and ABC used questionnaires specifically designed for use in white European, South Asian, and Aboriginal people, respectively. The serving sizes and consumption frequencies of individual food items within the 4 FFQs were harmonized and aggregated into 36 common food groups. Principal components analysis was used to identify dietary patterns that were internally validated against self-reported vegetarian status and externally validated against a modified Alternative Healthy Eating Index (mAHEI). Results: Three maternal dietary patterns were identified—“plant-based,” “Western,” and “health-conscious”—which collectively explained 29% of the total variability in eating habits observed in the NutriGen Alliance. These patterns were strongly associated with self-reported vegetarian status (OR: 3.85; 95% CI: 3.47, 4.29; r2 = 0.30, P < 0.001; for a plant-based diet), and average adherence to the plant-based diet was higher in participants in the fourth quartile of the mAHEI than in the first quartile (mean difference: 46.1%; r2 = 0.81, P < 0.001). Conclusion: Dietary data collected by using FFQs from ethnically diverse pregnant women can be harmonized to identify common dietary patterns to investigate associations between maternal dietary intake and health outcomes

Understanding experiences and perspectives in addressing unmet social needs of children and families in a paediatric weight management program: a qualitative descriptive study

Objective The objective is to describe the experiences and perceptions of caregivers who participated in a community systems navigator intervention that addressed unmet social needs.Design, setting and patients A qualitative descriptive study with caregivers of children enrolled in a clinical trial addressing unmet social needs of families with children cared for in a tertiary pediatric weight management clinic, through community systems navigation. Participants were asked open-ended questions related to perceptions of social needs screening in clinical settings. Interviews were recorded and analysed using Braun and Clarke’s six-phase approach to thematic analysis.Results Ten parent participants were interviewed. Social needs screening perception and acceptability varied between participants. Social needs screening was comfortable for most but stressful for others. Participants noted that trusting relationships promote comfort with sharing social needs information, and this data should be shared on the electronic health record if accurate and purposeful. They found the online screening tool convenient but thought it could also limit opportunities to elaborate. Some participants noted the intervention of community systems navigation helpful; however, others described the need for more tailored resources.Conclusions Screening for unmet social needs in clinical settings is complex and should be family centred, including the consideration of the mode of screening, data sharing in the electronic health record and ensuing interventions. Perspectives of families should drive the design of future larger scale community navigation interventions to address unmet social needs in clinical settings

A qualitative investigation of optimal perinatal health: The perspectives of south Asian grandmothers living in southern Ontario, Canada

Background: Perinatal health-seeking behaviours are influenced by various factors, including personal beliefs. South Asian women, who often live within a wide kinship system, can be influenced by the advice and guidance of their mothers and/or mothers-in-law. Methods: To explore the cultural health perceptions of South Asian grandmothers within this context, we used constructivist grounded theory to sample and interview 17 South Asian grandmothers who reside in Southern Ontario, Canada. Interviews were audio-recorded, transcribed verbatim, and coded/analyzed by three independent coders. Results: Many grandmothers emphasized that the preconception phase should focus on building healthy habits around nutrition, physical activity, and mental wellness; the pregnancy period should encompass an enriched environment (positive relationships, healthy routines, nutritional enhancement); and the postpartum phase should emphasize healing and restoration for both the mother and newborn (self-care, bonding, rebuilding healthy habits). Many of the grandmothers conceptualized these stages as a cyclical relationship where healing and restoration transitions gradually to re-establishing healthy habits before having a subsequent child. They also expressed responsibility in supporting their daughters and/or daughters-in-law with their family units and encouraging the transfer of perinatal health information. Conclusions: South Asian grandmothers are involved in supporting the family units of their children and involving them in perinatal health programming can be an effective way to translate health knowledge to South Asian women

Metabolic syndrome in children with and without developmental coordination disorder

Children with developmental coordination disorder (DCD) have higher rates of obesity compared to children with typical motor development, and, as a result may be at increased risk for developing metabolic syndrome (MetS). The purpose of this study was to determine the presence of MetS and its components among children with and without DCD. This nested case-control study classified 63 children scoring below the 16th percentile on the Movement Assessment Battery for Children (M-ABC-2) as probable DCD (pDCD), and 63 controls, all of whom scored above the 16th percentile. Metabolic syndrome was defined using the International Diabetes Federation (IDF) criteria. Eleven children met the criteria for MetS; 8 (72.3%) with pDCD and 3 (27.3%) controls (p= 0.115). Abdominal obesity was found in 39 (30.9%) of children, 29 (46.0%) with pDCD and 10 (15.9%) controls (p< 0.01). Serum triglycerides were higher in pDCD compared to controls, 91.9. mg/dl (63.1) vs. 67.7. mg/dl (33.3) in the control group, p= 0.001. Blood pressure was also significantly higher in the pDCD group, mean systolic BP (110 vs. 105. mmHg, p= 0.01) and mean diastolic BP (69 vs. 65. mmHg, p= 0.01). There were no statistically significant differences between the groups for other components of MetS. The higher prevalence of abdominal obesity and elevated triglycerides and blood pressure in children with pDCD may put them at risk of meeting all criteria of MetS earlier then their peers

Effectiveness of programs aimed at obesity prevention among Indigenous children: A systematic review

Given the significant health burden of childhood obesity, it is imperative that effective programs be better understood. When evaluating obesity prevention efforts, one must recognize the contextual factors which drive the disproportionate risk of obesity between populations. This systematic review sought to understand if programs aimed at obesity prevention and/or the promotion of healthy lifestyle behaviours for Indigenous children are effective.We conducted a search using Medline, EMBASE, PsychINFO, ERIC, CINAHL and iPORTAL databases from inception to August 13, 2019. We included experimental and quasi-experimental studies. The main outcomes of interest were change in anthropometrics, nutrition or physical activity. Our narrative synthesis included an assessment of study quality using the Effective Public Health Practice Project Quality assessment tool.A total of 34 studies met selection criteria. Most studies used a quasi-experimental design (n = 25) and were assessed as low to moderate quality (n = 32). Three studies showed a significant change in anthropometric measures, 14 studies demonstrated at least one significant nutrition-related behaviour or dietary-pattern change, and six studies demonstrated a significant impact on physical activity.This systematic review of programs to prevent obesity among Indigenous children finds a limited impact on anthropometric measurements. Future studies must prioritize Indigenous knowledge and ways of knowing to lead all phases of development, implementation, and evaluation of programs

Perspectives of nutrition and physical activity among families of an Indigenous Birth Cohort: a qualitative analysis exploring the barriers to and facilitators of healthy active living

This is a qualitative description of the perspectives and experiences of 15 mothers from the Indigenous Birth Cohort Study as it relates to barriers and facilitators to building and sustaining healthy active living practices. Our findings illustrate six themes: 1) Systemic reinforcements of a colonial legacy; 2) Self-perceived roles as caregivers to young children; 3) Social support and family support systems; 4) Health histories (personal, family, community); 5) Locally-tailored programs and services; 6) Access to digital resources and technology. Participants also discussed solutions, which we illustrate across individual, program-level, and broader community perspectives. When suggesting or making recommendations for future interventions, programs, or new solutions, it is vital to make considerations through a lens that considers the distal (individual), intermediate (program-level), and proximal (broader community-level) barriers and facilitators for individuals with young families

Maternal ethnicity and iron status in early childhood in Toronto, Canada: a cross-sectional study

Objectives: This study aimed to evaluate the association between maternal ethnicity and iron deficiency (ID) in early childhood, and to evaluate whether infant feeding practices linked to ID differ between maternal ethnic groups. Methods: This was a cross-sectional study of healthy children 1–3 years of age. Adjusted multivariable logistic regression analyses were used to evaluate the association between maternal ethnicity and ID (serum ferritin 2 cups; meat consumption). Results: Of 1851 children included, 12.2% had ID. Compared with the European referent group, we found higher odds of ID among children of South Asian and West Asian/North African maternal ethnicities, and lower odds of ID among children of East Asian maternal ethnicity. Statistically significant covariates associated with higher odds of ID included longer breastfeeding duration and daily cow’s milk intake >2 cups. Current infant formula use was associated with lower odds of ID. Children of South Asian maternal ethnicity had higher odds of bottle use beyond 15 months of age and lower odds of meat consumption. Conclusions: We found increased odds of ID among children of South Asian and West Asian/Northern African maternal ethnicities. We found a higher odds of feeding practices linked to ID in children of South Asian maternal ethnicity, but not in children of West Asian/North African maternal ethnicity. Culturally tailored approaches to providing guidance to parents on healthy infant feeding practices may be important to prevent ID in early childhood.Funding to support TARGet Kids! was provided by multiple sources including the Canadian Institutes for Health Research (CIHR), namely the Institute of Human Development, Child and Youth Health (No. FRN 114945 to JLM, No. FRN 115059 to PCP) and the Institute of Nutrition, Metabolism and Diabetes (No. FRN 119375 to CSB]) as well as, the St. Michael's Hospital Foundation. The Paediatric Outcomes Research Team (PORT) is supported by a grant from The Hospital for Sick Children Foundation. VG was supported by a University of Toronto Graduate Fellowship