The psychosocial experiences of adults diagnosed with coeliac disease: a qualitative evidence synthesis

BACKGROUND: Coeliac disease is a chronic autoimmune condition associated with intestinal and extraintestinal symptoms. Coeliac Disease is managed through strict adherence to a gluten-free diet, which, though usually effective, is challenging to maintain. This review synthesised qualitative research on the psychosocial experiences of adults living with coeliac disease.

METHODS: Keyword searches were conducted of the academic databases CINAHL, EMBASE, MEDLINE, PsychINFO, SCOPUS and Web of Science for articles published (2005-2021), followed by forward and backward searches. Thematic synthesis of included articles was carried out on sections reporting findings or results, discussion, conclusions, and supporting data. The inductive thematic synthesis identified descriptive and analytical themes from the included studies.

RESULTS: Of 1284 records identified, 17 articles from 15 original studies were included in the thematic synthesis. The majority of studies were from Europe (76%), with the remainder from North America and Australia. Data represented 371 adults with coeliac disease (72% female; 17-85 years old, diagnosed < 1-42 years ago) across eight countries. Findings identified six analytical themes relating to the psychosocial experience of coeliac disease: 'Living with ongoing risk'; 'Losing more than gluten'; 'A changed identity'; 'A changed relationship with food'; 'The gluten-free diet creates a multifaceted burden'; and 'Learning how to live well with Coeliac Disease'.

CONCLUSIONS: Coeliac disease changes adults' psychosocial experiences. Adaptation involves ongoing learning, and development of psychological acceptance facilitates adjustment. Increased public education about coeliac disease may reduce stigma and risk. Psychosocial assessment and support could improve quality of life post-diagnosis.