Background
ARFID is a relatively new diagnosis. ARFID is understood to cause an inability to consume enough food to meet nutritional and energy needs leading to harmful effects on those impacted as well as their families. Currently there is a lack of research on what it is like to live with ARFID as a child or young person and there is no national guidance on intervention. Aims
This study aims to explore the impacts of ARFID on children and young people and how they understand, cope, and make sense of the eating disorder. Methods
Qualitative data were gathered through online, semi-structured interviews with eight children and young people aged between 10-17. The sample included five young people with ARFID and three who did not have a formal diagnosis but who were experiencing difficulties with eating in line with the criteria. The data was analysed using reflective thematic analysis from a critical realist position. Results
Four main themes and twelve related subthemes were developed from the data. The four main themes were: the challenge of being in my body; ARFID shrinks my life; no one understands so how do I; and how I get by. Conclusions
The findings provide a novel insight into the experience of living with ARFID as a child or young person. The young people spoke about the impacts of ARFID on their bodies, experiencing unpleasant sensations and emotions and seeing food as a threat. The impacts of ARFID were far reaching, affecting school, hobbies and their social lives. Most of the adults around them, including professionals, did not appear to understand ARFID. It was common to experience invalidating comments from others, leading to shame. The young people made some attempts to make sense of their experience, but avoidance and indifference to thinking about ARFID was found. To cope, the young people tightly controlled their food and found support from certain individuals. The findings should inform families, schools and clinicians leading to better child-centred care. |