Factors associated with caregiver experience in families with a child with cerebral palsy.

PURPOSE

Managing the stresses of parenting a child with cerebral palsy (CP) can be challenging. This study sought to identify factors that are associated with higher levels of caregiver stress.

METHODS

A retrospective review of data from the Learn From Every Patient™ project conducted in an interdisciplinary CP clinic were used to compare caregiver responses on 2 subsets (financial and time/emotional) of the Assessment of Caregiver Experience in Neuromuscular Disorders (ACEND) and physical and medical characteristics of the child.

RESULTS

The range of scores in both the financial and emotional subset was large. The presence of behavior problems, seizures, and severity of CP showed the strongest associations with emotional stress and accounted for 14% of the variance in scaled scores (r= 0.392, adj R2= 14.3, p< 0.01). The child's age was not significantly related to parental stress. The most highly reported areas of stress were worry about the child's pain, and the financial impact of lost wages.

CONCLUSION

Caregiver experience varied widely and is associated with a range of factors among families caring for a child with CP. Further research is needed to test whether interventions to minimize the areas of greatest stress could make a meaningful difference in family functioning.