Exploring Family Care Journeys to Inform Cognitive-Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder and Somatic Symptom Disorders

Abstract

Avoidant/restrictive food intake disorder (ARFID) and gastrointestinal (GI)-related somatic symptom and related disorders (SSRDs) commonly co-occur, and both are associated with confusion in the process of accessing treatment. Furthermore, health professionals report low confidence in providing care for these conditions. Using a life history methodology, we explored the journeys of children and their parents with the diagnosis and treatment of ARFID and/or SSRDs and examined themes in barriers and facilitators to care. Six families with children (4 boys and 2 girls; 8–14 years old) with a diagnosis of ARFID and/or GI-related SSRD were recruited from a pediatric tertiary-level hospital. Interviews were conducted with four parents alone, and two parent-child dyads. Participants provided rich histories of the child’s health journeys with variation in the development of ARFID and GI-related SSRDs and subsequent management. Diagnostic uncertainty, the emotional impact of this journey on families, and systemic barriers to accessing treatment were themes of the healthcare narratives. Validating the emotional impacts of the healthcare journey and building trust may be helpful to address the diagnostic uncertainty that families experience. Strategies to support adaptation of cognitive-behavioral approaches for with children with complex ARFID and/or SSRDs are discussed.