Lessons learned from the virtual TeensNFitness4ALL pilot nutrition program for teens and young adults with developmental disabilities
by Brenda Manzanarez
Coauthors: Lina Rodas, MSW, LCSW & Ellen Iverson, MPH
Background: Individuals with autism spectrum disorder (ASD) are often excluded from community nutrition programs and research that can help improve their health. According to estimates from the Centers for Disease Control and Prevention, approximately 1 in 54 children today have a diagnosis of ASD. For many of these young individuals, especially those living in low-income and under-resourced neighborhoods, access to care and support that helps manage their weight is limited. Without specifically tailored interventions, many remain vulnerable to poor health outcomes later in life, including numerous complex chronic conditions such as cardiovascular disease and diabetes. Teens Nutrition & Fitness 4 All Learning Levels (TNF4ALL) pilot at Children's Hospital Los Angeles will introduce an adapted version of Kids N Fitness© (KNF), an evidence-based curriculum for managing weight, to teens diagnosed with ASD and other Development Disabilities (DD) and their families. The study will bring together interdisciplinary professionals to develop, pilot, evaluate, and refine the KNF curriculum with a group of families with teens who have DD. Identifying novel and effective approaches to helping these adolescents and their families live a healthier lifestyle and engage in healthier behaviors can be an avenue to improve access to care.
Objective: This pilot aims to analyze the feasibility of an evidence-based weight management program adaptation for neurodiverse youth and their families who experience food and weight concerns. The primary outcomes of the intervention are retention rates, program satisfaction, and qualitative observations of participation. Secondary outcomes include changes in body mass index (BMI) at 10-weeks compared to baseline.
Methods: Exploratory research via a parent focus group guided the curriculum and intervention adaptations. The 90-minute semi-structured interview was implemented virtually. The customized curriculum was delivered by a dietitian, psychotherapist, and dietetic students over 10-weekly 60-minute telehealth sessions. Participants included youth ages 14-22 and one caregiver. Youth and caregiver attended sessions on separate days, however learned similar content. Baseline and 10-week follow-up anthropometric data was collected along with satisfaction measures, and attendance tracking.
Results: Seven parents/caregivers of children with ASD participated in the focus group. Parents/caregivers shared their unique experiences and frustrations supporting healthy nutrition for young people who often struggle with sensory challenges, disordered eating, and behavioral disorders. Twelve youth participated in the 10-weekly interactive sessions via a virtual platform. Nine youth attended at least 5 sessions. Satisfaction included ease of use, enjoyment of participating in a group, watching videos, and playing interactive games as learning modes. Challenges included youth not displaying their face on camera, variability in attendance in some with competing activities, and verbal participation.
Lessons Learned: Involving families of youth with DD at different stages of the project helped to amplify the community voice by providing feedback to specifically support neurodiverse young people. Feedback gave us valuable insight to retention and content comprehension. Program development through interdisciplinary collaboration enriched this intervention by including various aspects of health in a person’s life such as nutrition and mental health. More research is needed to better understand the long-term impact of these novel interventions.