TITLE:
Predictors of Caregiver Burden for Caregivers of Children with DDx3x Syndrome
AUTHORS:
Jennifer L. Ciufo
KEYWORDS:
Caregiver, Burden, Genetics, Mental Health, Rare Disease
JOURNAL NAME:
Open Journal of Applied Sciences,
Vol.15 No.12,
December
29,
2025
ABSTRACT: Rare diseases pose significant challenges to afflicted patients and caregivers [1]. Many rare diseases are diagnosed during childhood, turning parents into lifelong caregivers and significantly increasing parental responsibilities and effort [2]. Families of children with rare diseases often experience a profound impact, especially if the diagnoses are difficult and treatment is complex or not well-developed [3]. This study examined caregiver burden and factors that impact caregiver burden among parents of children with DDx3x syndrome. The significance of this study is to bring awareness to the factors influencing caregiver burden in families with a rare disease. This information can be used for families and those within the health science community to better understand these factors and influences of anxiety, depression, and social support upon overall caregiver burden. A glimpse into the results indicated that depression is negatively related to anxiety (r = −0.372, p = 0.008). Depression is positively related to care burden (r = 0.285, p = 0.048). Another interesting aspect of the depression variable is that it positively relates to social support (r = 0.334, p = 0.016). Income and depression were both associated with caregiver burden. This paper examined the relationship between caregiver burden and caregivers of individuals with rare diseases, contributing to future research in the health science community to understand the dynamics of these variables.