Designing and Validation of Health-Related Quality of Life Inventory for Family Caregivers of Hemodialysis Patients

Abstract

Background: Family caregivers are important sources of care for hemodialysis patients. Althoughcaring for a family member is a pleasant feeling, experiencing lots of physical and psychologicalcaregiving burden influences the quality of life among family caregivers of hemodialysis patients.This study aimed to design and validate the quality of life inventory for family caregivers of patientson hemodialysis.Methods: A sequential-exploratory mixed method was conducted in Tehran, Iran, in 2017-2018. In thequalitative phase, the researcher conducted in-depth semi-structured interviews with 19 participants.Finally, a pool of 93 items was extracted from this phase. Then, psychometric properties such as facevalidity (Impact Score>1.5), content validity ratio (CVR>0.63), content validity index (Item ContentValidity Index: ICVI>0.78 , Scale Content Validity Index/Average: SCVI/Ave>0.8) and Kappa value(Kappa>0.7, internal consistency (Cronbach’s alpha>0.7), relative reliability (ICC:interclass correlationcoefficient),absolute reliability (Standard Error of Measurement: SEM and Minimal DetectableChanges: MDC), convergent validity (Correlation Coefficient between 0.4-0.7), interpretability,responsiveness, feasibility, and ceiling and floor effects were assessedResults: The quality of life inventory for family caregivers of hemodialysis patients was developedwith 34 items and five factors (namely patient care burden, conflict, positive perception of situations,self-actualization, fear, and concern). The findings confirm that the scale is acceptable regardingvalidity, reliability and other measurement features.Conclusions: This inventory is consistent with the health care status in Iran. Therefore, it can be usedto measure the quality of life among family caregivers of hemodialysis patients.

Keywords

• dialysis
• family caregivers
• inventory
• psychometric
• quality of life
• questionnaire