Affiliations: [a] Department of Physical Therapy, Nationwide Children's Hospital, Columbus, OH, USA | [b] Department of Social Work, Nationwide Children's Hospital, Columbus, OH, USA | [c] Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH, USA | [d] Department of Pediatrics, The Ohio State University, Columbus, OH, USA
Correspondence:
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Corresponding author: Garey Noritz, Complex Health Care Program, Cerebral Palsy Program, The Ohio State University, Nationwide Children's Hospital Columbus, OH 43205, USA. Tel.: +1 614 722 5808; Fax: +1 614 722 5847; E-mail:garey.noritz@nationwidechildrens.org
Abstract: 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.
