The experience of intolerance of uncertainty for parents of young people with a restrictive eating disorder

Purpose This study aimed to explore how parents of young people with a restrictive eating disorder (ED) experience and manage uncertainty. Methods Seventeen parents of young people with a restrictive ED were recruited from multi-family therapy groups run within a specialised ED clinic. Five focus groups were conducted asking parents about their experience of uncertainty both prior and after the onset of their child’s illness. Results Data were analysed using interpretative phenomenological analysis which yielded seven superordinate themes. (1) Anorexia nervosa and uncertainty, (2) Positive and negative experiences of uncertainty (3), Helpful and unhelpful ways of coping with uncertainty, (4) Parent’s self-efficacy and uncertainty (5), Needs of parents, (6) Parents’ perceptions of intolerance of uncertainty in their children and (7) Impact of uncertainty on family life. Conclusion Parents caring for young people with a restrictive ED exhibit a strong intolerance of uncertainty, particularly in relation to their child’s illness. This ‘negative uncertainty’ was thought to reduce their confidence as parents in how they managed their child’s ED. Targeting high levels of intolerance of uncertainty in parents caring for young people with an ED could be beneficial for supporting parents when faced with their child’s illness, increasing parental self-efficacy, decreasing accommodating behaviours and ultimately contributing to improved treatment outcomes. Level of evidence Level V: Opinions of authorities, based on descriptive studies, narrative reviews, clinical experience, or reports of expert committees.