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Publication

Parents matter and it matters for parents: An integrative approach to illness experiences in youth with a chronic health condition and their parents

Book - Dissertation

Chronic health conditions in youth not only affect the lives of patients themselves, they also exert a substantial impact on parents. By considering chronic health conditions as family conditions, the present project addressed some important gaps in this research area by (1) focusing on the challenging life periods of adolescence and emerging adulthood; (2) studying both negative and positive illness experiences; and (3) including youth along with mothers and fathers. In doing so, two different illness populations were sampled, that is, youth with type 1 diabetes and cancer survivors. This dissertation was structured into two parts. In Part I, illness experiences and well-being were examined separately in youth with chronic health conditions and in their parents. In Part II, a family perspective was applied to investigate how illness experiences in parents related to illness experiences and well-being in youth. In Part I, Chapter 1 investigated identity formation in childhood cancer survivors. Cancer survivors showed similar identity functioning as compared to a community-based control sample. The identity dimension of ruminative exploration stood out because of its associations with negative illness experiences and poorer psychological well-being. Chapter 2 used cross-lagged panel analysis to establish the longitudinal association and interplay between benefit finding and cancer-related worries in childhood cancer survivors and in mothers and fathers. Benefit finding was mainly associated with life satisfaction, whereas cancer-related worries were mainly related to depressive symptoms. Chapter 3 longitudinally investigated parental illness intrusiveness in parents of youth with type 1 diabetes. Mothers' and fathers' levels of illness intrusiveness were found to be interdependent over time. In addition, about 10% of parental couples was identified as being at risk for experiencing relatively high parental illness intrusiveness, but also elevated levels of depressive symptoms. In Part II, Chapter 4 focused on perceptions of control in youth with type 1 diabetes and their mothers and fathers. This triadic approach highlighted the importance of parental control perceptions on top of youth's own perceptions for explaining diabetes outcomes. Finally, Chapter 5 presented a cross-sectional path model from parental to youth well-being in the type 1 diabetes sample. Both in youth-mother and youth-father dyads, higher parental illness intrusiveness and depressive symptoms were related to poorer youth outcomes (i.e., higher depressive symptoms, poorer treatment adherence, and poorer glycemic control). These associations were partially explained by the parenting dimensions of psychological control and overprotection. This project further established the importance of addressing adolescents and emerging adults together with their parents in pediatric psychology. New insights were gained that could be useful for recognizing signs of significant burden but also signs of positive adaptation in youth and their mothers and fathers.
Publication year:2021
Accessibility:Open