Process of empowerment in mothers of children with very-early-onset inflammatory bowel disease: a qualitative study.

Background/aims: Mothers of children with very-early-onset inflammatory bowel disease (VEO-IBD) face unique challenges; however, these challenges and their consequences have not been well described. This study clarified the experiences and processes of empowerment of mothers of children with VEO-IBD.

Methods: This study performed a qualitative inductive analysis using semi-structured interviews. The interview content was transcribed, generating core categories, categories, and subcategories with a focus on mothers raising children with VEO-IBD. A modified grounded theory approach was employed to inductively construct a theory from the qualitative data.

Results: Fifteen mothers of children with VEO-IBD were interviewed (mean age, 43.9 ± 6.2 years). The modified grounded theory approach revealed the processes experienced by the mothers. The mothers faced various difficulties when their children developed VEO-IBD; however, their efforts to cope with these difficulties changed their situation. Furthermore, they were supported by various individuals, including family members, medical personnel, and, occasionally, families of other children with VEO-IBD. These processes strengthened and empowered the mothers.

Conclusions: Mothers of children with VEO-IBD who faced various difficulties were empowered through their efforts and support from family and others who understood their challenges. This process of empowerment continues throughout the development of children with VEO-IBD.