Development and Psychometric Evaluation of "Caregiver Burden Questionnaire for Family Caregivers of Patients Undergoing Hemodialysis": A Protocol for A Sequential Exploratory Mixed-Method Study

Caregiver burden is defined as the physical, financial, mental, and social problems stemmed from providing care for one of the family members who is involved with a medical problem. The precise measurement of caregiver burden is crucial, and it is essential to have an appropriate and specific tool for measuring caregiver burden. This study will be carried out using sequential exploratory mixed-method design with the aim of development and psychometric evaluation of a questionnaire for caregiver burden in family caregivers of hemodialysis patients.

The study will be done in 2 phases: 1. qualitative study and literature review, and 2. designing and psychometric evaluation of the questionnaire. In the qualitative phase, family caregivers of hemodialysis patients, patients, nurses, physicians, and social workers will be selected using the maximum variation purposive sampling method. Data will be gathered through semi-structured interviews using a combination of the questions derived from the model and open-ended questions and will be analyzed using directed content analysis. The literature review will be carried out based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses to improve the reporting of the systematic review. After developing the primary item pool, in the quantitative phase, the psychometric properties of the questionnaire will be evaluated. In this regard, face, content, and construct validity (exploratory factor analysis),internal consistency (Alpha’s Cronbach), reliability (test-retest), responsiveness, interpretability, and feasibility of the questionnaire will be assessed.

The primary questionnaire will be developedbased on the qualitative and systematic literature review; then, its psychometric properties will be assessed in the second phase.The result section will consist of the findings of these two phases.

It seems that a specific questionnaire could be a facilitator of identifying and measuring the actual caregiver burden.