“It's about survival, love and care” – Parents’ experiences of living with a child with ARFID: a Swedish interview study

Background A child with avoidant/restrictive food intake disorder (ARFID) has a diet so limited that it leads to medical, nutritional, and/or psychosocial problems. ARFID affects both children and their families, often causing parents to feel anxious and isolated. This study aimed to explore the experiences of Swedish parents raising a child with ARFID. Method Data were generated through semi-structured interviews with six parents of children diagnosed with ARFID. All children were undergoing treatment for ARFID at a paediatric healthcare clinic. The interview material was transcribed and analysed using thematic analysis with the NVivo 14 software. Results The analysis resulted in three themes: (1) “It’s hard work”: ARFID dominating life, (2) “It’s not about forcing: Seeking balance, and (3) “You feel questioned”: Feeling different. All themes highlighted the complex and demanding reality that parents faced. A significant part of the families' daily lives revolved around managing the eating disorder, with parents facing numerous challenges related to their child’s eating difficulties. Parents attempted to strike a balance between planning and improvisation to manage mealtime stress and unpredictability. They struggled to understand their child’s eating habits, facing ongoing tension between promoting variety and accepting restrictions, as well as between voluntary eating and using pressure. Constant worry about the child’s health and development was compounded by a lack of understanding from others and difficulty accessing appropriate care and support. Conclusions There is a need to raise awareness of ARFID and its related difficulties in early childhood. Educational support and detailed clinical guidelines for healthcare providers should be developed and implemented to enhance patient care. Parental experiences can serve as a valuable knowledge base for improving early detection and intervention strategies for children with ARFID.