Exploration of the Psychosocial Impact of Coeliac Disease on Adults and Their Family Members

Goodliffe, Samantha (2023). Exploration of the Psychosocial Impact of Coeliac Disease on Adults and Their Family Members. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.00016b54

Abstract

Coeliac disease (CD) is an autoimmune condition triggered by the consumption of gluten; a protein found in grains. In addition to the biological impact, CD impacts the psychosocial wellbeing of people with the condition. The sole treatment available for CD is a life-long gluten-free diet. Food and eating form a key behaviour in daily family life. The management of CD takes place in the family home and external social environment. Family can influence the behaviour and health of individual members. Evidence of how CD impacts family members, and how families support the management of CD is sparse. This thesis explored the lived experiences of nine families with an adult with coeliac disease, examining the psychosocial impact through an integrated biopsychosocial theoretical framework. The research adopted a participatory approach consulting with adult, child, and young person groups, on the research design. Individual (n=18) and dyadic (n=3) participant-generated photo-elicited interviews were conducted via online synchronous video. Transcribed interview data were analysed using reflexive thematic analysis. Data generated three distinct themes of family life; adjusting to life with CD; family life at home with food; and navigating the external social world. An overarching theme, ‘the perpetual presence of coeliac disease’, threaded these themes together. The adult with CD had the initial burden of orchestrating family adjustment to CD. All family members changed food related behaviours at home, constructing a conducive environment to support the management of CD. In the wider social world, stigma and negative affect were experienced by children and adults with CD. This thesis contributes to participatory research methods literature, demonstrating feasibility of public consultation, and application of participatory-photograph methods online. The research contributes to the wider literature on the psychosocial impact on families living with CD, having implications for the inclusion of family members in the management of CD.