WASHINGTON – As researchers take a closer look at stress in families with children who have cerebral palsy, they are finding that parents – particularly those with children who have the greatest activity limitations – expressed a need for more resources on coping strategies and ways to ease their burden.

Previous studies that focus on stress in families of children with CP have either examined a large age range of children, or focused on a particular age group such as preschoolers or infants. Meanwhile, there is a lack of studies on school-aged children with CP and their families, Dr. Annette Majnemer said at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine. “We need vigilance in terms of ongoing evaluation of family functioning in all stages.”

Dr. Majnemer of the School of Physical and Occupational Therapy at McGill University in Montreal, and her colleagues, found that nearly half of families with children who have CP exhibit a high level of stress. Parents of 95 children aged 6-12 years with CP were recruited for the study and asked to complete questionnaires. About 82%-92% completed all three measures on the Parenting Stress Index (PSI), Impact on Family (IOF) Scale, and Child Health Questionnaire (CHQ). Forty-five percent of parents were described as “highly stressed” and 11% were described as “defensive,” as measured by the PSI.

About half of the parents (49%-59%) said their children’s health “impacted on their time, emotional status, and family activities, but not family cohesion.”

Sociodemographics were not important and did not play a role in the levels of stress in this study. However, parents of children with gross motor difficulties and activity limitations tended to report higher levels of stress, Dr. Majnemer said. Hyperactivity and conduct was associated with the disruption of family cohesion, she said. “Internalizing behavior problems contributed to higher emotional effect on the family.”

Child factors associated with better family functioning were higher cognitive ability and prosocial behaviors. “If a child was very good at socializing with others, the family had less strain,” the occupational therapist said.

Dr. Majnemer said she had no relevant disclosures. The study was funded by the Cerebral Palsy International Research Foundation.

10/22/10  

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FROM THE ANNUAL MEETING OF THE AMERICAN ACADEMY FOR CEREBRAL PALSY AND DEVELOPMENTAL MEDICINE

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