Emotional and Social Dimensions of the Parents of Children with Type 1 Diabetes: A Survey-based Cross-sectional Study

Abstract

Introduction: Type 1 diabetes (T1D), especially in children, demands continuous attention and support from parents. Managing T1D can be a herculean task, which could even affect parenting. These challenges could become intense when the child reaches adulthood. In this study, we aim to understand the emotional and social dimensions experienced by parents raising children diagnosed with T1D, shedding light on the multifaceted challenges they encounter in fulfilling this crucial caregiving role. Methods: As part of the Kesavadev Trust Type 1 Diabetes Project Sweet Stars initiative, an ongoing project since 2016, a T1D education camp was organized in the Ernakulam district of Kerala, in November 2022. Knowledge, attitude, and practice were assessed using a prestructured questionnaire. A set of 12 questions were assessed on a scale ranging from “not at all” to “to a greater extent.” The camp attendees who were willing to participate were included in the survey. Descriptive statistics were used to summarize the findings of the survey. Categorical variables were presented as frequency (%), while continuous variables were summarized as mean (standard deviation) or median (Q1, Q3) based on the results of the Shapiro–Wilk normality test. SPSS version 27 was used for all the analyses. Results: A total of 64 parents participated in the study. Nearly half of the survey participants did not experience it to be challenging to be the parent of a child with diabetes 46.9%, while 23.4% expressed that to a greater extent, they found it to be challenging. 55.6% of parents stated that their child’s diabetes did not affect their work life, while 20.6% expressed that it affected their work life to a lesser extent. 36.7% of the parents expressed that they were concerned about their child’s risk of low blood sugar to a greater extent. The parent-school relationship was reported as great (50%). The parents expressed that their peers at school are sympathetic to their children to a greater extent (26.7%). 38.1% of the parents reported their child has access to a dietitian during hospital visits. More than half of the parents were satisfied with the doctor’s care and support (51.7%). The majority (37.7%) of parents were also worried to a greater extent regarding the child’s future complications. Conclusion: The study sheds light on the emotional and social dimensions experienced by parents raising children with T1D. Recognizing and addressing these factors is essential for enhancing the overall quality of life for parents who are facing the challenges of raising a child with T1D.