Understanding and Assessing Burden in Caregivers of People with Neurological Conditions

Systematic Literature Review

This systematic literature review aimed to identify, appraise, and synthesise quantitative research investigating predictors of caregiver burden among informal caregivers of people with Parkinson’s, providing a current summary of the literature. Five electronic databases were systematically searched, supplemented by hand searches of previous review papers, eliciting forty-one studies meeting inclusion criteria. Study quality was assessed using the JBI Critical Appraisal Checklist for Analytical Cross-Sectional Studies. Results were synthesised narratively. Consistent predictors of burden included motor symptoms, neuropsychiatric symptoms, quality of life of the person with Parkinson’s, and caregiver depression. Evidence was inconclusive for several variables. Several areas for potential future intervention are indicated, although methodological weaknesses within the literature limit the robustness of conclusions that can be drawn.

Empirical Research Project

This study aimed to develop and psychometrically evaluate the Neurorehabilitation Professional Caregiver Burden Scale (PCBS-Neuro), a new scale for measuring burden in professional caregivers of people with acquired brain injury. An initial 32-item pool was developed based on a literature review, focus group discussion, and expert feedback. Items were designed to measure four theoretically-defined dimensions of professional caregiver burden: physical problems, emotional problems, loss of empathy/detachment, and attitude toward job and profession. The item pool was administered to 138 professional caregivers working in neurorehabilitation services and data were analysed using exploratory factor analysis. Additional measures were completed by participants to assess construct validity of the final version of the scale. Exploratory factor analysis supported a 21-item scale with four factors: Physical and Emotional Problems, Work-Related Problems, Protective Factors, and Loss of Empathy/Detachment. The PCBS-Neuro demonstrated good internal consistency and preliminary data supports convergent and discriminant validity of the scale. Further testing of the scale through Rasch analysis, and to determine its temporal stability and validity, is required.