Latino-to-Latino: Promotores' Beliefs on Engaging Latino Participants in Autism Research.

BACKGROUND: In Latino(a) communities, promotores de salud (i.e., community health workers; promotores) are becoming critical participants in prevention, health promotion, and the delivery of health care. Although involving culturally diverse participants in research is a national priority, recruitment and retention of research participants from these groups is challenging. Therefore, there is an increased need to identify strategies for successful recruitment of participants from underrepresented minority backgrounds. Our overall study purpose was to gain promotores' perspectives on recruiting Latino(a) immigrant community members for an intervention study on autism spectrum disorders (ASD). The goal of this paper is to explore insider promotores' views on the barriers and facilitators to research participation in the Latino(a) community and learn strategies for recruiting Latino(a) participants in a nontraditional destination city. METHODS: We conducted qualitative focus groups with an established group of promotores known as Latinos Unidos por la Salud (LU-Salud), who were members of a community-academic research team. Fifteen LU-Salud promotores participated in the focus groups. Focus group interviews were analyzed by using Leininger's data analysis enabler. These results will inform our partnerships with promotores and Latino(a) neighborhood agencies to increase recruitment for community-based research on promoting awareness of ASD among Latino(a) families. RESULTS: Promotores were credible community members able to gain community trust and committed to improving the health and well-being of their Latino(a) community, including involving them in research. Latino(a) research involvement meant facilitating community members' engagement to overcome barriers of distrust around legal and health care systems. Challenges included legal uncertainties, language and literacy barriers, health knowledge, and economic hardship. Promotores also voiced the diversity of cultural practices (subcultures) within the Latino(a) culture that influenced: (1) research engagement, (2) guidance from promotores, (3) immersion in the Latino(a) community, and (4) health and well-being. Experienced promotores, who are living in a nontraditional migration area, believe the primary facilitator to increasing research involvement is Latino(a)-to-Latino(a) recruitment. CONCLUSIONS: These findings will aid in building partnerships to recruit participants for future studies that promote early recognition of ASD in the Latino(a) community.

Restricted Eating in Preschoolers with Autism: Mother Stressors and Solutions.

Feeding interventions for children with Autism Spectrum Disorder (ASD) focus solely on the child, not the family milieu. This qualitative study aimed to understand mothers' perspectives on managing restricted eating among preschoolers with ASD. Focus groups were conducted with eleven mothers of preschoolers with ASD. Audio recordings were transcribed, and data analyzed for themes. Mothers experienced stressors balancing priorities of adequate nutrition with family mealtime demands and found solutions in support from other mothers, strategies from a wide array of sources, and resorting to trial and error to improve eating. Healthcare practitioners should explore and consider family stressors, competing demands, and coping skills when recommending mealtime interventions for optimal child and family well-being.

Disparities Affect Developmental Risk for Head Start Preschoolers.

PURPOSE: This paper presents an analysis of Head Start (HStart) preschooler data by severity of developmental concern, while considering socio-demographic and other factors that highlight racial and ethnic disparities in the early identification of developmental delay or disability (DD). DESIGN AND METHODS: We conducted an analysis of 2014-2015 academic year data for preschool-aged children in HStart in both urban and suburban centers in a large Midwestern city. Descriptive statistics were used to determine the prevalence of developmental concerns and compare characteristics of children with mild-to-moderate versus severe developmental concerns; differences between groups were compared using t-tests and chi-square tests. Multivariate logistic regression was used to determine the independent effect of each predictor of concern severity. RESULTS: Nearly one-third of HStart preschoolers were identified with developmental concern; 70% were mild-to-moderate risk for DD and the remaining severe risk. Neither group was routinely referred to healthcare for evaluation or treatment, and most of the severe risk group did not qualify nor receive treatment for DD with an Individualized Education Plan. Suburban and urban preschoolers with severe concern were less likely to be African American or Latinx, suggesting that racially and ethnically diverse preschoolers in HStart may be under-identified and under-treated. CONCLUSIONS: Lags in the educational diagnosis of DD may mirror the disparities in diagnosis and treatment of DD among minority groups. Primary care is the first line for detection and treatment of DD, and offers a unique opportunity to act for racially and ethnically diverse HStart preschoolers disproportionately at-risk for DD.

Parenting African American Children With Autism: The Influence of Respect and Faith in Mother, Father, Single-, and Two-Parent Care.

PURPOSE: Parents are the most significant contributor to care of children with autism spectrum disorder (ASD), and as such research on African American parenting in ASD is conspicuously absent. Findings relevant to parenting are discussed from a study with urban African American families caring for children with ASD. DESIGN: An ethnonursing study was conducted with 24 African American family members of children with ASD and 28 professionals. Data were analyzed and reported as themes. FINDINGS: Two universal themes of were found of respect and faith in God and family that influenced parental care. Two diverse themes of mother's watchful care and father's protective care, along with differences in feelings of isolation and dependence on supports were found among single- and two-parent families. Discussion and Practice Implications: When health care professionals increase their knowledge and understanding of cultural practices in the parental care of children with ASD, they provide health care that is culturally congruent.

Translating Research to Practice for Children With Autism Spectrum Disorder: Part 2: Behavior Management in Home and Health Care Settings.

INTRODUCTION: Managing home and health care for children with autism spectrum disorder can be challenging because of the range of symptoms and behaviors exhibited. METHOD: This article presents an overview of the emerging science related to the methods to foster family self-management of common concerns regarding activities of daily living and behaviors, as well as for the health care provider in primary and acute health care settings. RESULTS: Recommendations are provided to enhance the overall delivery of services, including understanding and managing a child's challenging behaviors, and supporting family management of common activities of daily living and behaviors. DISCUSSION: Health care providers' knowledge of evidence-based recommendations for providing care, supporting family self-management of common concerns, and referral heighten the likelihood of better outcomes for children with autism spectrum disorder.

Translating Research to Practice for Children With Autism Spectrum Disorder: Part I: Definition, Associated Behaviors, Prevalence, Diagnostic Process, and Interventions.

INTRODUCTION: The number of children with autism spectrum disorder (ASD) is rising, along with the potential for challenging behaviors during health care encounters. METHOD: We present an overview of the emerging science related to ASD diagnosis and interventions for children with ASD. RESULTS: Emerging science on ASD reveals common associated challenging behaviors, increasing prevalence, emphasis on early diagnosis at 18 to 24 months of age, changes in the diagnostic process with criteria from the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, and interventions with medication, education, and behavior management. DISCUSSION: Family and health care provider preparation strategies facilitate care of children with ASD and their families. Early diagnosis at 18 to 24 months of age and evidence-based interventions contribute to best outcomes for children and families. Health care providers must be aware of the state of the science for diagnosis and best practices to provide family-centered care for this growing population.

African American families on autism diagnosis and treatment: the influence of culture.

Cultural factors such as health care access and autism spectrum disorder (ASD) symptom interpretations have been proposed as impacting delayed diagnosis and treatment for African American children with ASD. A qualitative study of urban African American families caring for their child with autism was conducted with 24 family members and 28 ASD professionals. Cultural caring meant families protected their child from harm including potential or actual distrustful encounters, and took action for their child and community to optimize their child's health and address the knowledge deficits of ASD within their community. Families and professionals believed cultural influences delayed families' receiving and seeking appropriate health care for the African American child with ASD affecting timely autism diagnosis and treatment.

Promotion of safe outcomes: Incorporating evidence into policies and procedures.

This article describes the process of incorporating evidence into policies and procedures, resulting in the establishment of evidence as a basis for safe practice. The process described includes use of the Rosswurm and Larrabee model for change to evidence-based practice. The model guided the work of evidence-based practice mentors in developing a template, system, and educational plan for dissemination of evidence-based policies and procedures into patient care.

Let Evidence Guide Every New Decision (LEGEND): an evidence evaluation system for point-of-care clinicians and guideline development teams.

OBJECTIVE: To develop tools for use by teams of point-of-care clinicians to improve access to evidence evaluation. METHOD: A search of the literature was conducted to review available evidence evaluation systems for their applicability to the project. Fourteen systems were reviewed in depth for strengths and limitations of the systems to meet the objective. Using these strengths and addressing the limitations, tools were developed and pilot-tested among an interprofessional team of clinicians. Results Five principles were drawn from the review of the literature and from our experience to guide development of six tools. The tools form a comprehensive evidence evaluation system known as Let Evidence Guide Every New Decision (LEGEND). LEGEND included a glossary, a table of evidence levels, an algorithm, a set of evidence appraisal forms, and worksheets to guide grading a body of evidence and judging the strength of a recommendation. CONCLUSION: LEGEND provides tools for point-of-care clinicians that assist them in synthesizing evidence from published studies. The tools provide a balance between quality processes and simplicity, use terminology friendly to multiple disciplines, assist comprehensively with the evidence evaluation process, incorporate factors familiar to the user, and provide flexibility for a diverse range of evidence evaluation projects and users.