Sleeping problems in mothers and fathers of patients suffering from congenital central hypoventilation syndrome

PURPOSE Advanced medical technology has resulted in an increased survival rate of children suffering from Congenital Central Hypoventilation Syndrome. After hospitalization, these technology-dependent patients require special home care for assuring ventilator support and the monitoring of vital parameters mainly during sleep. The daily challenges associated with caring for these children can place primary caregivers under significant stress, especially at night. Our study aimed at investigating how this condition affects mothers and fathers by producing poor sleep quality, high-level diurnal sleepiness, anxiety and depression. METHODS The study included parents of 23 subjects with Congenital Central Hypoventilation Syndrome and 23 healthy subjects. All parents filled out the Pittsburgh Sleep Quality Index questionnaire (PSQI), Epworth Sleepiness Scale (ESS), Beck Depression Inventory (BDI-II) and Beck Anxiety Inventory (BAI). RESULTS A comparison between the two groups showed that parents of patients had poorer sleep quality, greater sleepiness and higher BDI-II scores compared to parents of healthy subjects (respectively, PSQI score: 6.5 vs 3.8; EES score: 6.2 vs 4.3; BDI-II score: 8.4 vs 5.7). Specifically, mothers of patients showed poorer sleep quality and higher BDI-II scores compared to mothers of controls (respectively, PSQI score: 7.5 vs 3.8; BDI-II score: 9.3 vs 5.9), whereas fathers of patients showed greater levels of sleepiness with respect to fathers of healthy children (respectively, ESS score: 6.8 vs 4.0). These differences emerged in parents of younger children. CONCLUSIONS Congenital Central Hypoventilation Syndrome impacts the family with different consequences for mothers and fathers. Indeed, while the patients’ sleep is safeguarded, sleeping problems may occur in primary caregivers often associated with other psychological disorders. Specifically, this disease affects sleep quality and mood in the mothers and sleepiness levels, in the fathers.