The experience of intolerance of uncertainty for young people with a restrictive eating disorder: a pilot study

Abstract

Purpose: Research is consistently reporting elevated levels of intolerance of uncertainty (IU) in individuals with an eating disorder (ED). Less is known about the phenomenology of uncertainty for this clinical group. The present study aims to advance our understanding of the relationship between IU and restrictive EDs by providing insight into young people’s subjective experiences of uncertainty. Methods: Thirteen young people with a restrictive ED were recruited from multi-family therapy groups run within the Maudsley Centre for Child and Adolescent Eating Disorders at the South London and Maudsley NHS Foundation Trust. Three focus groups were conducted asking young people to discuss their views, experiences and coping strategies when faced with uncertainty. Results: Data were analysed using interpretative phenomenological analysis which yielded five superordinate themes: (1) young people perceived uncertainty as something negative; (2) high levels of anxiety and stress were identified as primary responses to uncertainty; (3) ED behaviours were given a functional role in reducing uncertainty; (4) need to control various aspects of young peoples’ lives was of high importance; (5) young people discussed how they struggled to find ways to cope with uncertainty and often used behaviours associated with the eating disorder psychopathology as coping strategies. Conclusion: Young people’s experiences of what uncertainty is like for them revealed a dynamic interplay between ED symptoms and fear of uncertainty. Findings support IU as a relevant concept for young people suffering from a restrictive ED and indicate that further exploration of IU from both theoretical and clinical perspectives could be fruitful. Level of evidence: V.