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Updated: Jul 7, 2026
Assessment and Communication for People with Disorders of Consciousness
Published on: August 1, 2017
Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment
Emily A Riggall1,2, Beth S Slomine1,2, Stacy J Suskauer3,4
1Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland, USA.
Insights
This study found that a telephone survey effectively assessed how a child's health impacts family functioning after acquired brain injury (ABI). The Pediatric Quality of Life Family Impact Module (PedsQL-FIM) proved feasible for caregivers of children with disorders of consciousness (DoC).
Area of Science:
- Neuroscience
- Rehabilitation Medicine
- Pediatric Health
Background:
- Acquired brain injury (ABI) can lead to disorders of consciousness (DoC), significantly impacting child patients and their families.
- Assessing the long-term effects of DoC on caregiver and family functioning is crucial for targeted support.
- Existing measures may not be easily administered to families of children with DoC.
Purpose of the Study:
- To evaluate the feasibility and utility of a telephone-administered measure for assessing the impact of child health on caregiver and family functioning.
- To describe caregiver and family functioning in patients with a history of DoC due to ABI.
Main Methods:
- A telephone-administered battery of measures was used, including the Pediatric Quality of Life Family Impact Module (PedsQL-FIM) and child functioning scales.
- Caregivers of 41 patients (aged 5-22 years) with DoC due to ABI, admitted at least one year prior, completed the measures.
- Data collection focused on administration time, floor/ceiling effects, and correlations between child and family functioning.
Main Results:
- The PedsQL-FIM telephone administration was feasible, with minimal floor/ceiling effects and an average administration time of 7.4 minutes.
- Family functioning was lowest in Daily Activities and highest in Family Relationships.
- Caregivers reported lower functioning compared to those with mild-severe ABI, with moderate correlations between child and family functioning.
Conclusions:
- The telephone-administered PedsQL-FIM is a feasible and useful tool for assessing caregiver and family functioning long after DoC associated with ABI.
- Further research is needed to identify factors influencing caregiver/family functioning to develop targeted interventions.
- This study highlights the importance of ongoing support for families navigating the long-term effects of pediatric ABI.
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.
