Development and validation of the care challenge scale in family caregivers of people with Alzheimer's disease

Abstract

BackgroundAlzheimer's disease (AD) is a progressive and debilitating disorder that strongly affects people with AD and their families. The changes in signs of the disease and its treatment lead to many challenges in people with AD that affect the performance and the ability of caregivers, their social life, and physical, emotional, and psychological aspects of caregivers' health. Therefore, this study was designed to develop and validate the Care Challenge Scale (CCS) for family caregivers of people with AD in the care context of Iran.MethodThis is a cross-sectional study, and the primary scale was based on 14 semi-structured interviews with family caregivers of Iranian people with AD. In the next phase, the psychometric features were assessed, including the face validity (qualitative and quantitative), content validity (qualitative and quantitative), item analysis, structural validity (exploratory and confirmatory factors), and construct validity (convergent and discriminant validity). Finally, the reliability was assessed using internal consistency (Cronbach's alpha, McDonald's omega coefficient, and the average inter-item correlation), stability (intraclass correlation coefficient), and absolute reliability.ResultsTotally, 435 Iranian family caregivers filled out online questionnaires, with a mean age of 50.26(±13.24) years. Based on the results of the qualitative phase, an item pool was generated with 389 items, and after deleting overlapping and unrelated items, the CCS with 14 items was created. The results of the quantitative phase showed that the CCS consists of two factors with 10 items each, which are named effective role-play challenge and lack of social–financial support, and they explained 42.23% of the total variance. Furthermore, the results of confirmatory factor analysis showed a good fitness of the scale structure model, and it had convergent and discriminant validity. The reliability indexes showed this scale has internal consistency and stability.ConclusionThe most care challenge among Iranian family caregivers of people with AD is effective role-play challenges and lack of social–financial support. The scale as designed has good validity, internal consistency, and stability that can be used by therapists, nurses, and researchers for the assessment of the challenges of this population.