Abstract :
[en] Background. Due to recently developed therapies, patients’ life expectancy with CF today is in the early 40s. As a result, medical providers in CF care centers seek not only to improve patients’ health but also to enhance their quality of life (QOL). QOL as a concept for children, in particular, is fairly new. Accordingly, QOL of school-aged children with CF is relatively under-investigated. In recent years, the role of family contextual variables has received increased attention as predictors of child adjustment to illness. Evidence exists that parenting and parent-child relationship factors are related to children’s emotional development and thus may be life-course determinants in their health. To date, no study has quantitatively investigated parental factors, particularly with respect to paternal variables, associated with the QOL of children with CF.
Objective. The study aimed to investigate the relation of parenting stress, family functioning, and fathers’ involvement in the disease’s management to emotional distress and QOL in children with CF.
Study design. Using a cross-sectional design, this study recruited families of children with CF from four different CF Centers. Data collection is on going and a full sample of 40 families is expected for this presentation.
To date, the study protocol was completed by 18 families. Inclusion criteria for children include: (a) a diagnosis of CF for at least one year; and (b) age 8 to 12 years. Also, both parents must be willing to participate to be included in our sample. Children complete the State-Trait Anxiety Inventory for Children (STAIC), Children’s Depression Inventory (CDI-2), and Quality of Life Systemic Inventory for Children (QLSI-C). Parents complete the Parenting Stress Index – Short Form (PSI-4-SF), Family Environment Scale (FES), and Dad’s Active Disease Support (DADS) (i.e., a measure of paternal involvement in illness management).
Results. With the full sample, we will run multiple regression analyses with STAIC, CDI, PSI-4-SF, FES and DADS as predictors of children’s QOL scores and run moderation and mediation analyses to examine the indirect effect of mothers and fathers’ variables on the child’s QOL. With the sample to date, QOL in children is significantly associated with state anxiety (r=.62; p=.007), trait anxiety (r=.76; p<.001), and depression (r=.77; p=.001). We also found a direct link between the mothers’ parenting stress levels and children’s QOL (r=.51; p=.031), anxiety (r=.49; p=.045), and depression (r=.47; p=.054). Fathers’ parenting stress levels (r=.54; p=.026) and mothers’ evaluation of fathers’ involvement (r=.47; p=.047) each are significantly associated with the mothers’ parenting stress. These results may be suggestive of a potential mediator effect.
Conclusion. Information about fathers is underrepresented in pediatric psychology research. However, interest in impact of parental adaptation on children’s adjustment to chronic disease is on the increase. The results of this study are expected to contribute significantly to the understanding of how both parents play a role in the QOL and emotional adjustment of school-aged children with CF.
