Stigma experienced by family members of people with intellectual and developmental disabilities: multidimensional construct

Abstract

BackgroundThere is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people.AimsTo develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables.MethodThe new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support.ResultsThe FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma.ConclusionsThis instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences.Declaration of interestNone.

Keywords

• Stigma
• attitudes
• family
• intellectual disability
• developmental disability
• autism