Date Presented 03/31/2022
The purpose of this research is to examine the experiences of mothers of children with autism spectrum disorder (ASD)-related feeding difficulties. Data for this study come from 15 in-depth interviews with mothers. The themes presented are feeding difficulties, limited resources assistance, and lack of participation and stress. A graphic conceptualization of our findings gives insight into the interaction of contexts and consequences of feeding difficulties. An application of our findings to therapy practice is given.
Primary Author and Speaker: Aaron Bonsall
Additional Authors and Speakers: Taylor Kouts, Kristel Ferrer
PURPOSE: The purpose of this research is to examine the experiences of mothers of children with ASD related to feeding difficulties. It is estimated that between 46-89% if children with ASD demonstrate feeding difficulties (Ledford and Gast 2006). Difficulties related to feeding can include food refusal, rapid eating, problems chewing, vomiting and .gastrointestinal problems (Leader et al). Previous research has identified a gap between parental needs and services that can be filled by occupational therapists (Bonsall et al 2021). This study gives therapists resources to address this gap by using qualitative interviews to identify parental needs. Design In this qualitative study 15 mothers of children with ASD were interviewed using a narrative approach. Mothers were recruited by email after they had agreed to be further contacted from a previous study. Children’s ages ranged between 9-16 years, and all had been diagnosed with ASD by a physician according to the ADOS.
METHOD: Mothers were interviewed using open ended questions to illicit stories. Interviews were conducted at a place of participants choosing (usually a coffee shop but some were over the internet). Analysis of the data was done by two authors who developed themes based on the entire data set. Across case themes were developed by the entire research team. Themes were based on the data and were iterative, constantly being adjusted throughout the process.
RESULTS: The three themes were descriptions of feeding difficulties, lack of resources, and lack of participation and parenting stress. The primary feeding difficulties described were nutritional deficiency, food selectivity and negative health outcomes. Lack of participation and parenting stress around feeding included mothers’ descriptions of the worry and struggle that accompanied feeding. Lack of family time including dinners added to parenting stress. Descriptions of lacking available resources included long wait times, poor coordination, and a lack of quality services. Included in this theme, parents of teenagers expressed increased feeding needs during teenage years that corresponded with decreased services during these years.
CONCLUSION: The results are organized into a conceptual model, giving insight into the interaction of contexts and consequences of feeding difficulties that emphasized a family centered approach. This conceptual model gives therapists insight into how a disruption in occupations interacting with contextual factors can directly impact the individual. Further, our model highlights the gaps in feeding services that can be addressed by occupational therapy. Impact statement This study enhances the practice of occupational therapy by identifying a gap in services that needs to be addressed by occupational therapists. This includes an identified overall need for feeding services, but also a need for therapy services addressing feeding for individuals with ASD going into their teenage years.
Leader, G.; Tuohy, E.; Chen, J.L.; Mannion, A.; Gilroy, S.P. Feeding Problems, Gastrointestinal Symptoms, Challenging Behavior and Sensory Issues in Children and Adolescents with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders 2020, 50, 1401–1410. https://doi.org/10.1007/s10803-019-04357-7
Ledford, J. R., & Gast, D. L. (2006). Feeding problems in children with Autism Spectrum Disorders: A review. Focus on Autism and Other Developmental Disabilities, 21(3), 153–166. https://doi.org/10.1177/10883576060210030401
Bonsall, A., Thullen, M., Stevenson, B., Sohl, K. (2021). Family-Centered Perspective on Addressing Feeding Concerns of Parents of Children with Autism Spectrum Disorder. OTJR: Occupation, Participation and Health https://doi.org/10.1177/1539449220985906