Diagnosis of Coeliac Disease in Children: a Qualitative Longitudinal Study with Parents

Résumé fourni par la source

Background Coeliac Disease (CD) is chronic autoimmune condition affecting 1% of the population which often onsets in childhood, although the diagnosis is often delayed or missed. Due to its nonspecific symptoms and variable presentation, parents and children can experience difficulties in navigating care and in receiving a timely diagnosis with CD. Existing qualitative literature predominantly focuses on ‘living with CD’ rather than the experiences of parents and children surrounding diagnosis. Aim This study aimed to explore parents’ experiences leading up to and following the diagnosis of CD in their children. Design, Setting & Methods A qualitative longitudinal study using semi-structured interviews with parents of children (aged 1–16 years) diagnosed in the preceding 6 months with CD from across the UK. Each parent was interviewed twice spaced 6 months apart. The interviews were audio recorded, transcribed and analysed using a combination of thematic analysis and trajectory approach. Results Thirty-eight interviews were conducted with parents of 19 children. A maximum variation sample was obtained for geographic region in the UK, child sex and the age of child at diagnosis. In the early stages following a diagnosis, parents described the emotional distress resulting from the challenges navigating the healthcare system to receive a diagnosis, the period of limbo between having the first positive test and a confirmed diagnosis, and in adjusting to the many changes afterwards including the gluten free diet. Barriers included communication with care providers, healthcare system navigation, conflicting information and cost and accessibility of gluten free foods. Over time, families experienced a shift towards feeling more capable and comfortable managing CD (with occasional triggers for the return of the negative feelings) and identified which resources they found most useful. Conclusion The emotional impact of a diagnosis of CD is significant for the entire family. Families experience issues with healthcare system navigation, and how/when information is provided. They also experience challenges with adapting to a gluten-free diet and with children feeling they are different/do not fit in. Provision of support and information at the time of initial testing and at diagnosis is crucial to facilitate adjustment to this lifelong diagnosis.

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