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

Key Points

• To explore the representations of youth strengths and difficulties in parenting adolescents with rare diseases and assess perceived parental competence.
• Explored family-responsive approaches in clinical settings.
• Emphasized routine monitoring of parental wellbeing.
• Supported strengths-based parenting strategies.
• Identified the need for longitudinal research for comprehensive evaluation.