A two-institution pilot study on the psychological burden and distress of parents caring for children with shunted hydrocephalus.

Objective: Little is known about the emotional health of parents caring for children with shunted hydrocephalus. The aim of this pilot study was to find out whether parents caring for shunt-treated hydrocephalic children experience serious psychological problems and psychosocial distress and whether these problems are related to the sociodemographic background of the caregivers, the clinical characteristics of their children, and parents' illness-related concerns and perceived burden of their children's illness.

Methods: This pilot study was performed in an outpatient setting at two German hospitals. The following questionnaires were handed out to parents of children with shunted hydrocephalus (< 21 years of age): the Patient Health Questionnaire (PHQ-9) for depression, the Generalized Anxiety Disorder Scale (GAD-7) for anxiety, the Distress Thermometer (DT) for psychosocial distress, the Hydrocephalus Concerns Questionnaire (HCQ) for assessment of parents' illness-related concerns, and the Hydrocephalus Outcome Questionnaire (HOQ) for assessment of perceived children's disease burden. Clinical data of the respective children were collected from electronic charts. Parents' demographic data were evaluated via questionnaires. Parents' psychological variables were correlated with demographic and clinical data and HCQ and HOQ scores. Regression analyses of HCQ and HOQ scores with psychological items were performed.

Results: Sixty-three parents were included in this study. Of these, 60% reported clinically relevant levels of either depression (11%), anxiety (10%), and/or psychosocial distress (57%). There were no associations between parental sociodemographic or children's clinical characteristics with parents' psychosocial well-being or psychosocial distress. Depression, anxiety, and DT scores were highly intercorrelated and significantly correlated with HCQ scores (r = 0.508, r = 0.516, r = 0.442; p < 0.01). Thereby, worries about shunt-related complications were the most reported concern in the HCQ. Depression and anxiety correlated with the scores of some HOQ subcategories. In preliminary regression analyses, higher illness-related concerns predicted occurrence of parents' anxiety.

Conclusions: The authors' results support the notion that there is a need for psychosocial support for a proportion of parents who care for shunted hydrocephalic children. Perceived child symptom burden and parental illness concerns were identified as relevant correlates of parental psychological well-being. Thus, concerns specific to shunt-related problems could be a first starting point for the development of individual support measures.