Coeliac disease is a common autoimmune condition in children, estimated to affect 1 in
100 in the UK. Coeliac disease can occur at any age and is treated with a lifelong
gluten-free diet. When someone with coeliac disease eats gluten (a protein found in
wheat, barley and rye), their immune system attacks itself and causes damage to the gut.
If left undiagnosed and untreated long term, the disease can cause complications like
growth problems, delayed puberty, tooth enamel defects, iron deficiency anaemia, chronic
fatigue and, over time, osteoporosis. The good news is, these potential complications can
be avoided with early diagnosis and treatment.
While strict management of the gluten-free diet has been linked to improvements in
intestinal damage and quality of life, the relentless behavioural and social demands of
detecting gluten is challenging. Often, families report concerns around attending family
gatherings, school trips, and eating out at restaurants due to the potential for
accidental gluten consumption. To manage these concerns, some families avoid social
events entirely, which can affect school attendance and participation in normal childhood
activities such as birthday parties and sleepovers. Children and young people (CYP) with
coeliac disease have described feeling like a "nuisance" and may experience social stigma
associated with their need to eat different food, frustration and isolation, and a higher
probability of developing mental health conditions, such as depression, anxiety, or
eating disorders.
A large body of research suggests that exposure to parental anxiety increases the risk of
similar problems in CYP. CYP can learn that certain situations lead their parents to feel
anxious, which may lead to them feeling threatened, and cope (usually by avoidance) in a
similar manner. The same appears true for families with coeliac disease, where
caregiver(s) with high levels of anxiety, have CYP with higher levels of anxiety. Whilst
the gluten-free diet is essential for the management of coeliac disease, it is not enough
to only address foods that must that be avoided in coeliac disease. Support must also
address how to navigate a gluten-free diet that does not require social isolation and
over-restriction. For CYP with coeliac disease, management of the gluten-free diet often
relies on the caregiver(s), and so, intervention components must support the whole family
system.
Self-help psychological interventions (interactive websites and books) for families of
CYP with food allergy and type one diabetes already exist. These interventions appear
impactful when embedded alongside routine care for CYP with food allergy, and looks
promising for CYP with type one diabetes. These findings suggest that these psychological
interventions reduce anxiety and increase wellbeing in caregiver(s), as well as their
CYP. In line with family desires and health system policy, this project will adapt these
existing self-help psychological interventions to support families of CYP with coeliac
disease, and test the impact on caregiver(s) wellbeing, and CYP gluten-free diet
management and wellbeing.
The anticipation is that the development and delivery of effective self-help
psychological interventions for caregiver(s) of CYP with coeliac disease will support
appropriate management of the gluten-free diet, alongside psychological wellbeing.