The Impact of Celiac Disease on Caregivers' Well-Being: An Integrative Review.

Abstract

OBJECTIVES A diagnosis of celiac disease (CD) requires individuals to adopt a strict gluten-free diet (GFD). As children with CD must rely on their caregivers for guidance and support with managing the GFD, CD may challenge the caregiver's emotional and social well-being. The primary objective of this mixed-methods systematic review was to synthesize of research investigating the impact of CD on caregiver's well-being. METHODS Five databases were systematically searched from 1990-2018 to identify all empirical studies that assessed well-being in caregivers of children (0-18 years) with CD. Qualitative and quantitative data were extracted separately before being integrated to explore key themes across the studies. RESULTS 12 studies were identified that explored the well-being of caregivers of children with CD (3 qualitative, 9 quantitative), reporting on 665 caregivers. The quality of evidence was limited across studies. Synthesis of results revealed three themes (Caregiver Responsibility, Caregiver Well-Being and Concern for Child's Health, Implications for the Family) describing the impact of a child with CD on caregiver well-being. CONCLUSIONS Caregivers of children with CD may experience difficulties that impact their well-being; specific difficulties identified included the impact of caregivers' social activities, finances and anxiety. The findings detailed in this review point towards factors that may guide health care personnel to provide support for the caregivers of children with CD.