UNCERTAINTY IN ILLNESS AND HEALTH-RELATED QUALITY OF LIFE IN PARENTS OF CHILDREN WITH TYPE 1 DIABETES

Abstract

Purpose and Background/Significance: Addressing uncertainty in illness for parents of children with a chronic condition is important because it has implications for parent caregiving and the affected child. There is a paucity of research on uncertainty in illness for parents of children with Type 1 Diabetes (T1D) who must grapple with their child’s daily care management. The study purpose was to explore the relationship between parents’ illness uncertainty, social support, depressive symptoms, burden, children’s illness severity and parents' health related quality of life (HRQOL).

Theoretical Framework: Mishel’s Uncertainty in Illness Theory guided the study. Uncertainty in Illness is defined as the inability of the parent to determine meaning of illness events or its trajectory and is measured in this study by the Parent Perception of Uncertainty Scale. HRQOL includes the physical, psychological, and social functioning that results as a response to a child’s chronic condition and is measured in this study by the PedsQL Family Impact module.

Method: A descriptive, correlational study was used. Pediatric endocrinology clinics of a large Saudi Arabian hospital provided a convenience sample of parents of children ages 2-11 years diagnosed with T1D for at least 2 months comprised the sample. Standardized instruments were administered to gather data on demographics, social support, burden, depressive symptoms, illness uncertainty, HRQOL and child illness severity. Data were analyzed using descriptive statistics, Pearson correlations, and Simultaneous Multiple Regression (SMR).

Results: A total of 97 participants met inclusion criteria. Social support, burden, and depressive symptoms were all noted to be significant predictors of HRQOL in the SMR with standardized beta results of ( β =0.169 p=0.028, β= -0.365, p=<.001, β= -0.310, p=<0.001), respectively. The model accounted for 56% of the adjusted variance in HRQOL and achieved statistically significance (F= 25.456, p= <001).

Conclusion: There was no association between uncertainty in illness and HRQOL among parents of children with T1D. However, social support, burden, and depressive symptoms were significant predictors of HRQOL for these parents. More research is needed to address these factors. This study's limitations include the small sample size and the fact that it was conducted at a single center.