Role of parents in fatigue of children with a chronic disease: a cross-sectional study

Abstract

ObjectiveAs parents majorly impact their child’s well-being, and as fatigue is a highly prevalent threat to the well-being of children with a chronic disease, we aimed to explore the association between parental factors and fatigue in children with a chronic disease.DesignCross-sectional studySettingTwo Dutch children’s hospitals.PopulationChildren 2–18 years of age with either an autoimmune disease, cystic fibrosis or post-cancer treatment, and one of their parents.Main outcome measuresPaediatric fatigue was measured using the PedsQL Multidimensional Fatigue Scale. Parental factors included parental pain, fatigue and physical symptoms, parental distress, catastrophising thoughts about their child’s pain and family empowerment. Multiple linear regressions were used to study associations with paediatric fatigue. A multivariable regression model was used to assess the effect of the different parental factors on paediatric fatigue. All analyses were adjusted for the age and sex of the child.Results204 families participated (mean age 11.0±4.3 and 43.5±6.3 years for children and parents, respectively; 69% participation rate). More parental pain, fatigue and physical symptoms, and more parental distress and pain catastrophising were associated with more paediatric fatigue. More parental empowerment was associated with less paediatric fatigue on both subscales. In the multivariable model, only paediatric age remained significantly associated with fatigue. In a separate multivariable model for children 8–18 years old, more parental distress (β=−1.9, 95% CI −3.7 to −0.1) was also significantly associated with more paediatric fatigue.ConclusionsIn a population of children with a chronic disease, parental factors, both physical and psychosocial, were associated with paediatric fatigue. Our study provides evidence that more family empowerment is associated with less paediatric fatigue. This exploratory study adds to our knowledge of associated factors with fatigue in paediatric chronic disease, providing starting points for targeted interventions.

Parents underestimate fatigue in younger children aged 5–7 years with asthma but not in older children

“…Although socioeconomic factors cannot be a direct causal factor for lethargy in children, they might be related to higher parental fatigue and lower empowerment of parents, which are directly related to higher fatigue in children and can be a target for interventions. 28 Our study has both strengths and weaknesses. One strength is that our study design gives insight into the differences between parental and children assessments of a child's lethargy.…”

“…In our study, a lower fatigue score was associated with lower family income and social allowances as the main source of income. Although socioeconomic factors cannot be a direct causal factor for lethargy in children, they might be related to higher parental fatigue and lower empowerment of parents, which are directly related to higher fatigue in children and can be a target for interventions 28 …”

The PROactive cohort study: rationale, design, and study procedures

“…The challenges encountered are considerably similar across various diseases, pleading for a transdiagnostic approach. [7] Transdiagnostic can be defined as an approach in which clinicians aim to go beyond the disease-specific biological factors of a disease and look for generic factors. [8] It is therefore important to assess fatigue, daily life participation and psychosocial well-being in children with a chronic condition, including different biological, psychological, and social factors that are associated with these generic outcomes in the PROactive cohort study.…”