Caregiver Burden Among Those Caring for Patients With Spina Bifida

1) To identify baseline characteristics of caregivers of school-aged children with spina bifida; 2) To identify independent predictors of caregiver burden in this population.

A survey was distributed via Facebook advertising to caregivers of patients with congenital genitourinary anomalies from May to September 2018. Eligible participants (n = 408) entailed English-speaking adults who are involved in the patient's care and attend ≥50% of their medical appointments. Caregiver burden was assessed using the Caregiver Burden Inventory (CBI), where higher scores indicate higher burden. CBI ≥24 indicates need for respite and CBI ≥36 indicates high risk of burnout. Bivariate analyses (t-tests and chi-square tests) were conducted using STATA software.

Our analysis includes 408 caregivers caring for patients with spina bifida. In our study population, 59.3% of caregivers were in need of respite due to caregiver burden and 26.7% of caregivers were so burdened that they are at risk of burning out (CBI score ≥36). Bivariate analysis showed that caregiver gender and number of tasks performed by the caregiver were significantly associated with risk of burnout (CBI ≥ 36). Multivariable analysis of overall caregiver burden showed increased risk of burnout (CBI ≥ 36) among older caregivers, female caregivers, and those performing more caregiving tasks.

Caregiver burden is common among caregivers of patients with spina bifida, and further research is needed to identify strategies and resources for mitigating caregiver burden.