The Journey to Autonomy: Understanding Parental Concerns During the Transition of Children with Chronic Digestive...

Background and Objectives: The transition from pediatric to adult-oriented healthcare is challenging and data on parental involvement and perception regarding the transition of children with chronic digestive diseases are scarce. Materials and Methods: Legal guardians of adolescents with chronic digestive diseases receiving care at a North-Eastern Romanian tertiary center and private offices were administered a 30-item survey. Results: There were 124 responders; 73.4% lived in rural areas; 81.5% were patients' mothers. Positive correlations were found between parents' perception of the child's readiness for health-related decisions and appreciation of the children's preparedness for transition (0.544; p = 0.000), between parents encouraging their children to maintain healthcare records and their perception of the children's knowledge about their disease (0.67; p = 0.000), between parents' fear of therapeutic breaks during transition and their perception of the need for transition training (0.704; p = 0.000), between fears for children's impropriate health-related choices, fears of therapeutic breaks (0.573; p = 0.00) and parental perception that the adult physicians would be more patient-oriented and less family-centered (0.453; p < 0.000) and between parents' trust in their children's self-management skills and encouraging them to make decisions on their own (0.673; p < 0.000). Conclusions: The results of our study highlight the importance of addressing parental fears during special parent-children counseling sessions and promoting a child's independence, chronic disease knowledge, records and alone consultations.