Studies have investigated the experiences of courtesy stigma and affiliate stigma in family members of individuals with intellectual and developmental disabilities (IDD) without a clear distinction between the two. This systematic literature review aimed to evaluate the findings of studies that examined the experiences of stigma in families of individuals with intellectual disabilities and/or autism. A systematic search of PsycINFO, ERIC and Scopus identified relevant articles published between 2012 and 2016, to expand on an earlier review on this topic published in 2012. Ten articles pertaining to eight studies were identified. They revealed that family carers do experience stigma and various consequences related to these, with family culture influencing these experiences. This review identifies a number of psychosocial variables that are associated with the development of courtesy stigma, affiliate stigma and their consequences. It highlights protective factors and strategies family carers use to cope with stigma, and a lack of clarity in distinguishing the concepts of courtesy stigma and affiliate stigma in family members.

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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.

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Challenges encountered included differing priorities, maintaining collaborative relationships, stigmatization and inadequate understanding of the profile of at risk youth. Future community-engaged research should be conducted more comprehensively to generate maximum benefits.