Stress levels of parents of children with Prader-Willi syndrome (PWS) increase as the children age, and are especially high during their teenage years, according to a study.
The study, “Parenting stress in families of children with Prader–Willi syndrome,” was published in the American Journal of Medical Genetics.
Raising and caring for a child with a neurodevelopment disorder can be strenuous for parents and caregivers. Previous studies have documented that parents of children with PWS have higher levels of stress.
However, no study has assessed the causes of such stress in families with PWS patients, which are key to provide comprehensive and dedicated clinical care.
In this study, researchers at the Taipei Tzu Chi Hospital, Taiwan, evaluated parenting stress, seeking to identify the greatest contributing factor for stress in families of children with PWS.
The scientists used the Chinese versions of the Parenting Stress Index-short form (PSI/SF), a widely used assessment tool, and the Child Behavior Checklist (CBCL/6–18), a parent-report checklist for children ages 6 to 18.
In total, they analyzed the responses of 67 PWS families. Patients’ mean age was 14.9, (range 1 to 35), 73.1% had moderate to severe intellectual disability, and 53.7% were overweight or obese.
According to the total PSI/SF scores, 41.8% of the families had high levels of parenting stress: 40.3% reported high stress on the subcategory of “difficult child,” 38.8% on the “parent–children dysfunctional interaction,” and 46.3% on “parental distress.”
Patients in the families with higher stress levels were significantly older than those in lower stress families; mean was age 18.2 vs. 12.5, respectively. Other factors, including sex, intelligence, body mass index and genetics ,showed no significant difference between the higher and lower stress families.
A total of 35 patients, ages 6 to 18, and their parents completed the CBCL/6–18 questionnaire. In this subgroup, 13 of the 35 families (37.1%) reported high levels of stress among parents.
In agreement with the previous results, patients in these high-stress families also were older, 13.9 vs. 11 years. These families reported high levels of anxiety/depression, withdrawal, somatic complaints — focus on physical symptoms resulting in distress — social and attention problems, and delinquent behavior of the children with PWS. After accounting for several variables, only the somatic complaints correlated with high parenting stress.
Overall, “parenting stress for children with PWS was high and correlated with children’s age, especially during teenage years and adolescence,” the researchers wrote.
These results highlight the “importance of having dedicated medical care for both somatic and neuropsychiatric symptoms,” they concluded.
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