1. Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment.
- Author
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Riggall, Emily A., Slomine, Beth S., Suskauer, Stacy J., Borda, Allison, Lahey, Sarah, and Ludwig, Natasha N.
- Subjects
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PILOT projects , *TELEPHONES , *FUNCTIONAL status , *HEALTH outcome assessment , *ACTIVITIES of daily living , *PSYCHOLOGY of caregivers , *CHILDREN'S health , *QUALITY of life , *RESEARCH funding , *DESCRIPTIVE statistics , *BRAIN injuries , *CONSCIOUSNESS disorders , *FAMILY relations , *STATISTICAL sampling , *DATA analysis software , *TELEMEDICINE , *REHABILITATION for brain injury patients , *DISEASE complications , *CHILDREN - Abstract
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). 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. 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. 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. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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