Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment

Objective: Examine initial feasibility/utility of a telephone-administered measure in describing impact of child health on caregiver/family functioning in patients with a history of a disorder of consciousness (DoC) due to severe-acquired brain injury (ABI). Method: Caregivers of patients admitted at least 1 year prior for inpatient rehabilitation with DoC completed a battery of measures administered via telephone examining the impact of child health on caregiver/family functioning (Pediatric Quality of Life Family Impact Module; PedsQL-FIM) and child functioning. Results: Forty-one caregivers of unique patients (age = 5–22 years; M = 14.9, SD = 5.1; 63% male; time since injury = 1–18 years; M = 5.3; SD = 4.2) completed the telephone measures. PedsQL-FIM floor and ceiling effects were minimal (administration time = 5–16 min, M = 7.4; SD = 2.8). Family functioning was lowest in Daily Activities and highest in Family Relationships. Relative to caregivers of patients with mild-severe ABI, caregivers reported lower caregiver/family functioning. Correlations were moderate between child functioning and caregiver/family functioning on some PedsQL-FIM scales. Conclusions: Within this relatively small convenience sample, results indicate the PedsQL-FIM administered via telephone is feasible and useful in describing the impact of child health on caregiver/family functioning long after DoC associated with ABI. Future studies are needed to understand factors contributing to caregiver/family functioning to inform targeted interventions.