Development and Validation of the Internalized Care Stigma Scale (ICSS): Measuring Care Stigma Aimed at Informal Care for Older Adults in Germany.

Abstract

Background and objectives: In this study, we developed and validated the Internalized Caregiver Stigma Scale (ICSS) to measure internalized stigma targeting informal care for older adults (≥60 years) in Germany.

Research design and methods: The ICSS scale was developed in the Attitudes Towards Informal Caregivers project based on stigma theories and (cognitive) pretesting with informal caregivers. Informal long-term caregivers (aged ≥40 years; n = 433) of older relatives (aged ≥60 years) were quota-sampled from the online panel GapFish in December 2023 (twice as many female and middle-aged [aged 40-64 years] caregivers than male and younger [18-39 years] or older adults [65+ years] were included in the sample). Caregiver identification and the Social Impact Scale were used for validation of the newly developed measure. Factor structure, reliability, and concurrent validity were tested.

Results: A correlated 2-factor model with excellent goodness-of-fit criteria and good to excellent internal consistency of the factors and the total scale was confirmed for the ICSS. The negative ICSS subscale correlated highly, and the positive ICSS subscale correlated weakly, with the care-specific Social Impact Scale. Both ICSS subscales were weakly correlated with caregiver identification. Both aspects of self-stigma showed significant associations with sociodemographic and care-specific factors in the regression models.

Discussion and implications: The ICSS is the first scale measuring internalized stigma targeting informal care for older adults directly and shows excellent psychometric criteria. It provides the necessary tool for a new approach to analyze the complex psychosocial mechanisms in this highly relevant care context.