Experiences of parents whose children were diagnosed with inflammatory bowel disease in childhood or adolescence: Focus on parent’s sense in daily life

Abstract

 This study aimed to describe in their own words the experiences of parents whose children were diagnosed with inflammatory bowel disease (IBD) in childhood or adolescence, with a focus on parent’s sense in daily life. Semi-structured interviews were conducted with six parents whose child was suffering from IBD in childhood or adolescence. Data were analyzed using a qualitative-inductive method. As a result, 13 categories emerged that characterize the experiences of these parents focusing on parent’s sense in daily life. For example, the 13 categories were “I think a lot about my child’s future and feel anxiety,” “for my child, I struggle with my child’s illness,” “I feel sorry that there are restrictions on child’s meals and daily life,” “unless you are my child, you can’t understand his/her thought,” “I understand my child’s feelings and wishes from his/her unexpected expressions.” From the results of this study, parents experienced that they felt their children having sense of self in adolescence. For example, parents became aware of their children’s feelings and thoughts from his/her expressions. On the other hand, parents accumulated the subjective experience that they had mixed feelings when they recognized their children’s unstable physical condition and future prospect. It is important that parents are being respected as a person and supported having their sense of self when their children move from adolescence to adulthood.