Perceptions of parenting children with type 1 diabetes diagnosed in early childhood.

Background: The purpose of this study was to explore perceptions of psychosocial adaptations in parenting young children with type 1 diabetes (T1DM) from diagnosis through childhood.

Methods: Fourteen parents of 11 children with T1DM who were diagnosed at age five years or younger participated in semi-structured interviews. Data were analyzed using content analysis.

Results: Three significant themes were identified. In the theme "Diagnostic Experiences: Frustrations, Fears, and Doubts," parents described inadequate diagnostic experiences with pediatricians where concerns were minimized and diagnosis was sometimes delayed. Although hospitalization occurred abruptly, communication with specialists was more satisfactory. In the theme "Adapting to Diabetes," parents described isolation in caring for their child's T1DM. Family and friends had minimal understanding of T1DM care. Support groups lessened mothers' isolation, but fathers were less positive about this experience. Parental adaptation was more effective when responsibility for diabetes decision making was shared. All parents reported never mastering diabetes management. The theme "Negotiating Developmental Transitions" revealed that normative childhood events were stressful, requiring that parents balance concerns to foster their child's participation.

Conclusions: Pediatric providers can improve diagnostic and treatment experiences for parents of children with T1DM by recognizing feelings of isolation and lack of mastery, providing attentive communication, encouraging parental teamwork, and offering ongoing anticipatory guidance.