Difficult behaviors in Dravet affect caregivers’ quality of life

Parents in Dutch survey report feeling 'lost and alone' in managing issues

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Children and adults with Dravet syndrome commonly exhibit challenging behaviors such as aggression, dangerous behavior, and impulsivity, according to a Dutch study based on responses from 20 parents.

These behaviors, apart from the seizures that are a hallmark of the disease, can greatly affect the quality of life of patients’ parents and siblings.

“Although seizure management remains crucial, our results suggest that challenging behaviors associated with DS [Dravet syndrome] lead to a huge burden of care in the home environment,” the researchers wrote in “Challenging behavior in children and adolescents with Dravet syndrome: Exploring the lived experiences of parents,” which was published in Epilepsy & Behavior.

“Healthcare professionals working with DS patients may need to develop shared decision-making strategies that take into account challenging behavior,” the researchers said.

Externalizing behaviors, such as aggression and impulsivity, were mostly reported by parents of children with Dravet, while internalizing behaviors, those made into routines or compulsive habits, were reported more in adolescents and young adults.

Dravet syndrome is a type of epilepsy marked by episodes of prolonged seizures starting in the first year of life. Research shows most patients have behavioral problems that can severely affect their quality of life. Despite their high prevalence, “relatively little is known about how behavior develops from early childhood to adulthood,” the researchers wrote, adding their effect on Dravet patients and their families “has not been described before.” The strategies used to care for a child with Dravet also remain largely unknown.

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Studying Dravet-related behavior issues

Researchers in the Netherlands assessed how parents of Dravet patients experience disease-associated behavior difficulties and explored those differences in young children and adolescents and young adults.

They conducted three focus groups for participants to answer questions in a moderated setting and used a predefined list of open questions. In total, 20 mothers of Dravet patients (mean age, 11.8; range 3-22) participated.

Parents of younger children, ages 3-13, more often reported externalizing behavior, including aggression, dangerous behavior, and impulsivity. These were followed by hyperactivity, and routinized habits such as aversion to change and rigidity.

Parents of adolescents and young adults, ages 14-22, reported more internalizing behavior, with the most common being routinized habits, followed by compulsive and repetitive habits, aggression, and dangerous behavior.

When asked about Dravet’s impact on the family, “many parents reported feeling exhausted and admitted they needed help,” the researchers wrote. They also said treatment-resistant seizures and life-threatening situations were stressful, making them feel they had to be on constant alert.

Attention shifts from seizures to behavior, other issues

During the child’s first years, parents reported the most energy and time-consuming aspect of caregiving was dealing with seizures. As children grew, parents’ attention shifted to behavior problems, walking difficulties, and the child’s relationship with family members.

Parents reported concerns about patients’ siblings, who were often the target of aggressive outbursts. Because parents focus most of their attention on the child with Dravet, they said they had “feelings of guilt for not paying enough attention to their other children.”

Parents felt unable to prevent outbursts and emphasized that eating problems were also stressful. These problems included poor appetite, decreased tolerance for food variety, prolonged mealtimes, and picky eating. Mealtimes were described as stressful for both the child and their family.

The parents said they’d developed strategies to improve Dravet-related behavior — distracting their child being the most effective. Other strategies included building a routine and structure into the day, parenting courses, seeing a child and youth psychiatrist, deep pressure stimulation, essential oils, cannabidiol (CBD) oil, vitamins, and supplements. Deep pressure stimulation uses firm, gentle pressure to relax the nervous system. CBD is the main nonpsychoactive component of the cannabis plant.

The parents said their main focus in current Dravet care is on seizure control, but many mentioned behavior and eating problems.They reported feeling “lost and alone” when searching for solutions to manage behavior problems and felt often misunderstood by healthcare professionals.

“We would advise that parents actively discuss challenging behavior with healthcare professionals and express the impact of such behavior on the quality of life of the child and the families,” the researchers wrote. “In case of challenging behavior, healthcare professionals with expertise in this area should be part of the multidisciplinary treatment team, in order to provide proper care for these behavioral difficulties. We would recommend that healthcare professionals also consider the mental health of the caregivers of the child they are treating.”