In this first study assessing the psychosocial burden of parenting a child with CHI, caregivers reported pronounced rates of anxiety and depressive symptoms.
Anxiety symptoms according to the GAD-7 mean score were significantly more prevalent in the cohort (8.9 [SD 5.2]) than in a large sample of the German general population (3.6 [SD 3.3]) . Compared to data from the European Health Interview Survey, major depressive symptoms in the PHQ-8 were also significantly more common in parents of children with CHI (29.8%) compared to the German general population (9.2%) . The prevalence for mild depressive symptoms was 41.7% and 29.2% for moderate to severe depressive symptoms, respectively (compared to 6.3% and 2.9% in the general population) .
Significantly higher levels of depression and anxiety have been reported in parents of children with numerous chronic diseases [20; 21]. In 2014, van Oers et al. found that practical problems in daily life and parenting stress were the strongest predictors of anxiety and depression, while illness-related data had no impact on the psychological outcome .
Surprisingly, the frequency of hypoglycemia had no impact on anxiety and depressive symptoms in parents of children with CHI, however, in multiple regression analysis, the strongest predictor was a child’s neurological impairment. It has been previously reported, that caring for a disabled child is associated with a high caregiving burden and psychological morbidity [22–24].
Comparable to our study, mothers have been reported to have significantly more symptoms of anxiety than fathers  and prior or current psychotherapy was a predictor of both anxiety and depression .
In this study, self-assessment yielded average scores for PQoL. The result is comparable to other studies using the same instrument for parents of children with chronic diseases [16; 25; 26]. Parents in our analysis reported the lowest scores for ‘self-development’ and highest scores for ‘satisfaction with family life’, as previously described [10; 16; 25; 26]. It can be assumed that parents often put their children’s needs above their own, leaving them little time for personal development due to the time-consuming disease management.
Mothers reported significantly lower PQoL than fathers. This result may indicate their role as the child’s primary caretaker, as there were significantly lower weekly working hours reported by mothers compared to fathers. Because treating a child with CHI is often demanding and challenging, primary caretakers carry the main burden of managing daily medical and social care, which impacts both their mental health and professional activities.
Having a child with a chronic disease was associated with reduced parental employment in several studies [27; 28] and higher rates of parents working part-time compared to parents of healthy children .
Interestingly, a higher number of weekly working hours was a strong predictor of decreased symptoms of depression and anxiety as well as increased PQoL in our study. Job gratification and distraction from daily coping with the child’s illness may explain this finding. Despite the ‘double burden’, caretakers of disabled children who were satisfied with their job also indicated less parenting stress (30). Further, worse mental health was reported in unemployed mothers of chronically ill children. The authors concluded that a lack of childcare services and limited family support increased the likelihood of maternal unemployment [30; 31].
We also found that low social support and limited availability of reliable assistance in the supervision of the CHI child were associated with higher family burden, poor mental health, and decreased PQoL. Social support is important for the adjustment process to a child’s chronic condition. A recent US study found that higher levels of perceived social support were associated with lower levels of anxiety in parents of children with a serious life-threatening illness . In parents of children with cancer, poor social support was the most important predictor of poor mental health outcomes .
It is therefore crucial for parents to have a reliable support network and train others in taking care of their children to share the burden of care and improve their well-being.
Parental psychosocial problems can influence both the physical health and psychosocial functioning of the chronically ill child. Nonadherence to treatment and poor disease-related health outcomes in children with chronic diseases have been linked to their parent's mental health problems and stress [34–36]. Anxiety or depression in a parent doubles the risk for an adolescent child to also report elevated psychological distress . Interestingly, despite the high psychological distress in parents of CHI children reported here, a Finnish study found no deterioration in the quality of life of the affected children themselves .
While annual screening for depression and anxiety has been officially recommended, e.g. in patients with cystic fibrosis and their parents , these recommendations are lacking for CHI and other chronic diseases. Given the high prevalence of psychosocial distress among parents of chronically ill children and the associated complications, we strongly emphasize the implementation of regular mental health screening of families affected by a child’s chronic illness to identify adverse outcomes early and to optimize referral of parents and/or patients to psychosocial counseling as needed .
There are some limitations to this study. First, the disease is rare, thus the sample size was relatively small, and parents with psychosocial strains may be overrepresented in this study due to a higher response rate from individuals with interest in this matter. Second, because the survey was conducted anonymously, it was not possible to evaluate whether two parents came from the same family which might bias the results. Third, the study cohort presented a relatively homogeneous group with high socioeconomic status, stable relationships, and overrepresentation of mothers. Future research in larger cohorts across socioeconomic strata is therefore needed to provide adequate information on all parents caring for a child with CHI. Fourth, the comparison of psychosocial burden between parents of children with CHI and those with other chronic diseases is limited by differences in disease characteristics and the use of different screening instruments within studies. Consecutive studies assessing parental psychosocial outcomes in CHI are therefore needed and should favorably use standardized instruments for comparability.
In conclusion, symptoms of anxiety and depression are highly prevalent among parents of children with CHI. Strong predictors of adverse mental health outcomes and lower self-reported quality of life were female gender, limited social support, low working hours, and comorbidities or neurological impairment in the affected child. Psychological screening for parents of children with CHI should be implemented to ensure early identification of psychological strains and to offer psychosocial support as needed. Parents should be encouraged and supported to train others to take care of their child to share the burden of care and allow more time for personal needs and self-development. Job gratification and distraction from daily coping with the disease through occupational activities may improve parents’ mental health.