"I have a Ph.D. in my daughter": Mother and Child Experiences of Living with Childhood Chronic Illness.

Abstract

Children in the United States are increasingly living with chronic illnesses. Existing literature has focused on adolescent children's experiences. The current study involved interviews with 10 families: children (ages 6-11) diagnosed with chronic illnesses and their mothers to better understand the experience of living with chronic illness. Using grounded theory, participants' responses fell into several themes: impact on family dynamics, parental advocacy, initial difficulty followed by resilience, unique stressors, and areas of social support. Overall, both mothers and children reported unique challenges related to living with childhood chronic illness, especially in terms of family dynamics, sibling relationships, and the mother-child relationship. However, almost all families also emphasized their ability to be resilient. The results have implications for medical practitioners and teachers who work with school-age children with chronic illnesses. Mothers need to feel supported and understood by professionals. Families need support to cope with stressors and strengthen couple, sibling, and parent-child relationships.