Parenting adolescents with rare diseases: representations of youth strengths and difficulties and perceived parental competence

Abstract

Background: Adolescence and the onset of emerging adulthood are periods of increasing autonomy; when a rare disease is present, parents may experience heightened psychological strain. Parenting self-efficacy is central to parenting competence, yet little is known about how parents' perceptions of adolescents' difficulties relate to this sense of competence in rare-disease contexts. Objectives: To examine associations between parent-perceived adolescent difficulties/strengths and parenting self-efficacy and satisfaction, and whether patterns vary by family size. Methods: In this cross-sectional study, parents of adolescents and young adults with rare diseases (n = 56) and of typically developing peers (n = 56) completed the Strengths and Difficulties Questionnaire and the Parenting Sense of Competence Scale. Group differences were tested with MANOVA/MANCOVA; associations were examined with Pearson correlations and multiple regression. Results: Compared with controls, parents in the rare-disease group reported more behavioural, emotional, hyperactivity/inattention and peer problems. Unexpectedly, they also reported higher parenting self-efficacy and satisfaction. Family size showed nuanced patterns (e.g., higher efficacy in three-child families; higher satisfaction in one-child families). Across the rare-disease group, greater perceived difficulties were associated with lower competence, whereas prosocial behaviour showed positive associations. Conclusions: Findings support strengths-based, family-responsive parent work and routine monitoring of parental wellbeing in clinical/psychoeducational settings. Longitudinal research is needed to evaluate directionality.