STIGMA EXPERIENCED BY PARENTS OF ADULTS WITH INTELLECTUAL DISABILITIES

Abstract

Background: Stigma can not only affect the stigmatized individual, but also those closely associated with that individual, such as parents. Parents are often in the role of primary caregivers for individuals with intellectual disabilities. However, few studies have looked at the experiences of stigma in parents of adults with intellectual disabilities. Objectives: Three objectives of the current study were to test the internal consistencies of three scales aimed to measure experiences of parents of adults with intellectual disabilities (two stigma scales and one scale looking at positive personal, perspective on life, and relational changes in parents), test the inter-correlation between the scales and describe the parents’ experiences. Methods: A self-administered survey containing the three scales was mailed to parents of adults with intellectual disabilities by agency staff on the investigators’ behalf. The participants were identified through a database of anonymized information about individuals with intellectual disabilities within the six counties of South Eastern Ontario. A total of 97 participants (parents) were eligible for the study. Results: The scale measuring positive changes experienced by parents had significant item non-response. However, all three scales achieved good to excellent internal consistencies when tested in the current sample. The two stigma scales were moderately correlated with one another in a positive direction, while the scale measuring positive changes in parents did not significantly correlate with either of the stigma scales. Mothers and younger parents (less than 65 years) were more likely to report that stigma affected their ability to interact with relatives than fathers and older parents. Parents of adults with dual diagnosis (having both an intellectual disability and mental health problems) were more likely to report that stigma affected their family’s quality of life than parents of adults with an intellectual disability only. Conclusion: Both of the stigma scales are recommended with caution, with recommendations ranging from rewording of items, change in item order within the survey, more conservative item response categories, reconsideration of dichotomizing responses and a mode of survey administration which lowers the potential for non-response. Certain groups of parents of adults with intellectual disabilities experience stigma differently than others.