Measuring care and comfort in children with cerebral palsy: the care and comfort caregiver questionnaire.

OBJECTIVE

To evaluate the psychometric properties of the Care and Comfort Caregiver Questionnaire (CareQ), which was developed to measure the perceived effort of caregivers in providing care for children with moderate to severe cerebral palsy (CP).

DESIGN

Cross-sectional data collection from a representative sample of a large racially/ethnically diverse geographic region.

SETTING

Outpatient CP clinics at a metropolitan rehabilitation institution.

PARTICIPANTS

A total of 100 primary caregivers of children with CP whose Gross Motor Function Classification System (GMFCS) levels were III-V.

METHODS

The CareQ was administered to primary caregivers of children with CP. Internal consistency of the CareQ and its 3 domains (Personal Care, Positioning/Transfers, and Comfort) were evaluated with the Cronbach α. Construct validity of the CareQ was evaluated by its correlation with the Pediatric Functional Independence Measure (WeeFIM). Associations between CareQ scores and child and caregiver characteristics were assessed.

RESULTS

Mean CareQ scores for children with GMFCS levels III, IV, and V were 30.6, 42.8, and 45.1, respectively (P < .01). The Cronbach α was 0.90 for total CareQ and 0.93, 0.80, and 0.82 for its Personal Care, Positioning/Transfers, and Comfort domains, respectively. Total CareQ and WeeFIM scores were negatively correlated (r = -.22; P = .03). Total CareQ scores were positively correlated with the child's age (r = .38; P < .01) and with body weight (r =.37; P < .01); however, no caregiver characteristics were associated with CareQ scores.

CONCLUSIONS

The CareQ is a concise and internally consistent measure of difficulty of care as perceived by caregivers of children whose GMFCS levels were III-V. Further investigation should include assessment of responsiveness of the CareQ to changes in the child's functional status over time and/or with rehabilitation interventions.