Perceptions of Parenting Children With Type 1 Diabetes Diagnosed in Early Childhood

Abstract

Introduction To explore perceptions of psychosocial adaptations in parenting young children with type 1 diabetes (T1DM) from diagnosis through childhood. Method Fourteen parents of eleven T1DM children diagnosed at ≤5 years participated in semi-structured interviews. Data were analyzed using content analysis. Results Significant themes were: Diagnostic Experiences: Frustrations, fears and doubts: Parents described inadequate diagnostic experiences with pediatricians where concerns were minimized and sometimes delayed diagnosis. Although hospitalization occurred abruptly, communication with specialists was more satisfactory. 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. Negotiating Developmental Transitions: Normative childhood events were stressful requiring that parents balance concerns to foster child participation. Conclusions Pediatric providers can improve diagnostic and treatment experiences for parents of T1DM children by recognizing feelings of isolation and lack of mastery, providing attentive communication, encouraging parental teamwork, and offering ongoing anticipatory guidance.

Digging Deeper: The Role of Qualitative Research in Behavioral Diabetes

“…This finding is similar to results from another interview study in which parents of children diagnosed with type 1 diabetes at 5 years of age or younger reported never having mastered their child's diabetes care on average 8 years after diagnosis [8]. Both of these studies suggest that health care professionals need to recognize that parents' adjustment to their children's diagnosis of diabetes is an ongoing dynamic process without a discrete end point.…”

“…Interestingly, studies exploring parent perceptions of parenting children/adolescents with type 1 diabetes found that parents reported major concerns regarding their child's developing independence [8,25,26]. Parents further described parental partnering/teamwork as very important to managing their children's diabetes [8,27].…”

“…In this section, we review studies of adult type 2 patients' experiences of diabetes diagnosis or screening for prediabetes and parents' experiences of their children's diagnosis of type 1 diabetes [8,10,12,15,31]. Further, we review studies of patients' perceptions of successful treatment, commencing insulin, and use of diabetes technology [11•, 14, 16•, 32-34].…”

“…Studies exploring interpersonal relationships in diabetes care including patients and health care providers and patients and families inform us of communication difficulties in doctor-patient relationships, anxious interactions between parents and children, and the need for family partnerships in the management of diabetes [5][6][7][8][9]. Further, qualitative behavioral diabetes studies of patients' first-hand experiences allow us to identify factors that support or interfere with effective diabetes care [10, 11•, 12, 13 •, 14, 15].…”

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design (Preprint)

“…Daily T1D management of is immensely challenging for parents/caregivers and adequacy of parental coping is intertwined tightly with their children's metabolic and psychosocial outcomes [4][5][6][7][8][9][10][11][12][13][14]. Yet, there are few resources that specifically target the unique needs of this special population or that equip health care providers to offer feasible and effective coping strategies to their parents/caregivers [15][16].…”