Mental health and sleep troubled for parents of child with Dravet
Study in Sweden finds life quality challenges relative to general public
Health-related quality of life is low for parents of children with Dravet syndrome relative to the general public in Sweden, with higher levels of anxiety, depression, and other mental health challenges, along with poorer sleep, a study found.
Higher levels of anxiety were reported among these women than among the children’s fathers, although a majority of respondents of either sex noted feelings of anxiety, while some level of depression was experienced by a similar proportion of both sets of parents. Likewise, a majority of both mothers and fathers reported problems with sleep, mostly tied to mental health.
“The very high rates of mental health and sleep difficulties in parents of children with [Dravet] suggest that all parents of [these] children … should be screened for such difficulties and offered support if needed,” the researchers wrote.
The study, “Health-related quality of life, depression, anxiety, and sleep in mothers and fathers of children with dravet syndrome in Sweden,” was published in Epilepsy & Behavior.
Few studies into the impact of Dravet syndrome look at mothers and fathers
Dravet syndrome is a rare form of epilepsy, with disease symptoms characterized by frequent and prolonged seizures — uncontrolled bursts of electrical activity in the brain that affect muscles. These seizures often start in infancy and may be difficult to control with available Dravet medications.
Due to the frequency of seizures, developmental delays, including poor growth, sensory processing issues, and problems with movement, balance and speech, can affect children with Dravet. Poor sleep and behavioral difficulties also are frequently noted.
Studies have shown that parents of children with epilepsy face significant challenges regarding their mental health, quality of life, and well-being. Particularly among mothers, caregiving also is associated with lower energy levels, and difficulties with career advancement and finances.
However, “population-based data on the impact of [Dravet syndrome] on parental wellbeing is very limited and few studies have included both mothers and fathers,” the researchers wrote.
Researchers in Sweden analyzed health-related quality of life, sleep, and mental health measures in 41 mothers and 39 fathers caring for any of 42 children with Dravet, born between 2000 and 2018.
Children, identified at collaborating hospitals, underwent psychological assessments while their parents completed standardized surveys into their health-related quality of life, sleep, and mental health (anxiety and depression) between October 2018 and April 2020.
Parental assessments were compared with assessments from a Swedish population norm sample, matched by sex and age. Dravet mothers were matched with women ages 30 to 39, while fathers were matched with men ages 40 to 49.
Boys were a majority, 55%, of the children. The median age at disease diagnosis was 2.4 years, and the group’s median age at study evaluation was 9.1 years. Children experienced a first seizure at a median age of about 5 months, with an initial epilepsy diagnosis at a median age of about 10 months. Most of the children, 67%, were not considered to have severe intellectual disability.
Caregivers show poorer general health, emotional well-being than other adults
Health-related quality of life was assessed using the RAND 36-item Short Form Health Survey (SF-36), in which higher scores indicate better health status. Both mothers and fathers had significantly lower SF-36 scores on general health, fatigue and energy levels, social and emotional role functioning, and emotional well-being than the reference population.
Within the groups of parents, mothers had significantly lower emotional well-being scores than did fathers.
Depression and anxiety as measures of parental mental health were assessed using the Hospital Anxiety and Depression Scale (HADS). On this scale, higher scores represent more severe symptoms and can identify people at risk of clinical anxiety or depression.
HADS results showed 83% of mothers and 59% of fathers in the at-risk range for clinical anxiety, and an equal percentage — 46% — of parents of either sex at-risk for depression. A higher percentage of women in this group had possible or probable anxiety compared with the men (83% vs. 59%), the researchers reported, with mental health difficulties more common among younger mothers and those with more sleep problems.
No statistically significant difference was seen between mothers and fathers reporting sleep difficulties (78% vs. 67%), and these problems, largely insomnia, associated with mental health issues for both parents. Mothers of children with sleep difficulties, however, were more likely to also have trouble sleeping.
“The fact that child [sleep] difficulties were associated with maternal and not paternal difficulties could be related to the fact mothers more often sleep with children with DS [Dravet syndrome] than fathers as previous research suggests that co-sleeping is more common in DS,” the scientists wrote.
“More research is needed to uncover the relationship between parental sleep and parental mental health in parents of children with Dravet syndrome and in particular the temporal aspect of the relationship,” the team wrote. “This will allow a better understanding of the evolution of difficulties in parents and may help choice of support/treatment.”
The researchers recommended studies into bedtime monitoring devices that might lessen the need for a parent to sleep with a child, and that future clinical trials of potential disease treatments include as study goals assessments of parental health-related life quality, sleep, and mental well-being.
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