A multicenter study revealed that 38.1% of parents of teens with cerebral palsy (CP) have significant stress levels requiring professional assistance. The stress is especially caused by the behavioral disturbances of the teen.
The study, “Family adaptation to cerebral palsy in adolescents: A European multicenter study,” was published in the journal Research in Developmental Disabilities.
Although significant factors in family dynamics have been identified, they have not been examined together. This study aimed to pinpoint factors that promote family adaptation to a child’s disability, influencing the parents’ psychological well-being and ultimately the child’s overall well-being.
Research was conducted as part of the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE). Information was collected from 286 families of adolescents with CP (aged 13 to 17 years) living in Ireland, France and Denmark. Participants were visited at home between January 2009 and April 2010.
At the interviews, researchers assessed stressors, family resources, parental distress, and the negatively perceived impact of CP in family life.
The goal of the study was to determine how healthcare professionals can adequately respond to the needs of the family and improve its adaptation to a child with disability.
“Family is a dynamic system: facing disability, it tries to recover its balance with available resources and its perception of the situation,” the team wrote in its report.
Stressor subcategories that were evaluated included motor disabilities and associated impairments, such as cognitive or communication disorders, behavioral or emotional problems, and socioeconomic variables. It was found that behavioral disturbances (e.g., hyperactivity) were more of a stress factor on parents than motor skill impairments, although both were significant. Factors with no effect included the child’s intellectual impairment, marital status of parent(s), and affluence of the family.
Additionally, stress levels were found to be relieved when at least one parent works, as various benefits can arise from employment — not only producing financial gain and serving as a social outlet, but also in creating general satisfaction or value derived from contributing to society.
Resources related to coping mechanisms of the families were assessed through questions addressing family functioning, respite care, house adaptation (such as toilets and kitchen modifications), financial support and a parent’s positive attitude. Of these, having resources that allowed a break in care-taking and the parent’s attitude were the factors that made the greatest impact in decreasing parental distress.
Possible negatively perceived effects of the child’s CP in relation to family life included impacts on work, social activity, time, finance and health; responses showed that only health was deemed as a negatively perceived parameter.
The team concluded: “Particular attention must be paid not only on physical condition but also on adolescent psychological problems to improve family adaptation. Families at risk of experiencing severe distress should be targeted early and proactive caregiver interventions on the whole family should be performed,” emphasizing that the important considerations for family are the “quality of family functioning, the parents’ positive attitude, and the possibility of taking time off from caregiving.”
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