“It’s been a very, very long and emotional journey, and the impact is huge”: a reflexive thematic analysis exploring the experiences of parents of children and young people with ARFID

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Abstract
Background: Avoidant Restrictive Food Intake Disorder (ARFID) is a relatively newly classified eating disorder which can significantly impact physical health and psychosocial function. This qualitative study aimed to explore the lived experience of ARFID caregivers in order to develop understanding of the condition and how it should be supported. Methods: Semi-structured interviews were conducted with the parents of sixteen children and young people with ARFID, who were recruited from an outpatient eating disorder service in the UK. Interview transcripts were analysed using Reflexive Thematic Analysis. Results: Qualitative analyses revealed four key themes: (1) From fussy eating to something more: The development of ARFID, (2) A fragile process: Factors that worsen and maintain ARFID (3), Developing a toolkit: Learning what helps, and (4) The weight of ARFID: The burden on the whole family. A conceptual model of ARFID development and maintenance is proposed, illustrating the relationships and interactions between the themes captured in the analysis. Conclusions: This study provides insight into the nature and course of ARFID, highlights the widespread impact on the individual and their family, and illustrates the critical role that parents play in managing this eating disorder.

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