Parents HRQOL, Their Satisfaction with Care, and Children Over the Age of Eight’s Experiences of Family Support Two Years Subsequent to the Child’s Diagnosis with Type 1 Diabetes

ABSTRACT Parents react differently after their child is diagnosed with type 1 diabetes, both at onset and longitudinally. The aim of this study was to describe and compare the disease impact on parents, in terms of health-related quality of life (HRQOL), parents’ satisfaction with the care received, and the child´s experience of diabetes-specific family support 2 years after the child’s diagnosis. A further aim was to compare mothers’ and fathers’ HRQOL and satisfaction with care over time from the child’s diagnosis to follow-up 2 years later. A total of 43 children and 114 parents participated. Parents independently filled in the PedsQLTM Family Impact Module and the PedsQLTM Health Care Satisfaction Generic Module and children over the age of 8 filled in the Diabetes Family Behavior Scale®. The results showed that mothers reported a lower level of emotional functioning than fathers (p = 0.011) and a higher degree of worry 2 years after the child’s diagnosis (p = 0.035). Parents reported an overall high satisfaction with the child’s healthcare, but mothers reported lower satisfaction concerning the satisfaction of their emotional needs (p = 0.012). There was no correlation between how children experienced parental support and their HbA1c value. However, one outlier emerged and when this was removed a significant correlation was found between HbA1c and a warmth-caring support. When a child is diagnosed with type 1 diabetes it is important to take into consideration how parents are affected longitudinally. Furthermore, it is also important to further explore what children over the age of 8 estimate as important with regard to their family support.