“It’s about survival, love and care”—parents’ experiences of living with a child with ARFID: a Swedish interview study
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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. 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 families with ARFID (e.g., meal planning, addressing nutrition concerns with supplements, supporting parental responses).
Plain English summary
This study looked at what it is like for Swedish parents to raise a child with avoidant/restrictive food intake disorder (ARFID), a condition where a child's extremely limited eating leads to health, nutrition, and/or social problems. Six parents were interviewed while their children were receiving treatment. Parents described life with ARFID as exhausting and all-consuming. Much of their daily routine revolved around planning meals, handling unpredictable eating behaviours, and worrying about their child's health. They tried to find a workable balance between planning meals and adapting on the fly, between encouraging new foods and accepting limitations, and between letting the child eat voluntarily and feeling pressure to intervene. Many parents also felt misunderstood or judged by others, which added to their stress and sense of isolation. They often struggled to get the right support from healthcare services. The study concludes that ARFID needs to be better recognised early in childhood, and that clearer clinical guidelines are needed. Parents' experiences can help improve early identification and support for families, including advice on meal planning, nutrition, and how to respond to a child's eating challenges.
