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

ABSTRACT

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.

KEYWORDS:

• Child
• caregiver
• coma
• brain injuries
• rehabilitation
• quality of life

Acknowledgments

We would like to express our gratitude to the patients and families who took part in this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research supporting data is not available.

Additional information

Funding

This study was funded by the Foundation for PM&R Gabriella Molnar Pediatric PM&R Research.