title: Measuring care and comfort in children with cerebral palsy: the care and comfort caregiver questionnaire.
abstract: 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).
  
  
  METHODS
  Cross-sectional data collection from a representative sample of a large racially/ethnically diverse geographic region.
  
  
  METHODS
  Outpatient CP clinics at a metropolitan rehabilitation institution.
  
  
  METHODS
  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.
authors.affiliation: Department of Rehabilitation Medicine, Korea University College of Medicine, Seoul, Korea.
authors.forename: Miriam
authors.initials: M
authors.lastname: Hwang
authors.forename: Maxine M
authors.initials: MM
authors.lastname: Kuroda
authors.forename: Beverley
authors.initials: B
authors.lastname: Tann
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Gaebler-Spira
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000592:standards*; D002547:Cerebral Palsy / Q000175:diagnosis / Q000208:ethnology / Q000534:rehabilitation*; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005006:Ethnicity; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007087:Illinois / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D009048:Motor Skills / Q000502:physiology*; D017063:Outcome Assessment, Health Care; D010818:Practice Patterns, Physicians'; D015995:Prevalence; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult