Table 1.

Background, methodological characteristics and summary of key results of included studies organised by cultural region

Cultural region	Study authors and setting	Key study aim(s)	Study approach and/or design	Sampling method	Sample characteristics	Type(s) of stigma identified by study authors or current authors	Stigma assessment method	Mental health assessment method	Summary of key results
East Asian	Ting et al. (2018); Mainland China	To examine the effects of self-esteem, proneness to shame and family functioning on affiliate stigma and depression with a sample of caregivers of children with autism in Mainland China	Quantitative cross-sectional questionnaire survey	Convenience sampling	263 caregivers, 80.6% of whom were parents, and 15.6% were grandparents. The mean age of participants was 34.6 years (SD = 5.4), 71.5% of caregivers were female, while 74.9% of their children were male. The mean age of participants’ autistic children was 5.39 years (SD = 2.38)	Affiliate stigma	‘Affiliate Stigma Scale’ (Mak and Cheung 2008)	Depression measured by the CES-D (the Center for Epidemiologic Studies Depression scale, Radloff 1977)	Affiliate stigma significantly positively correlated with depression (r = 0.55, p = < 0.01). After integrating results of two path analyses, caregivers low in self-esteem, high in proneness to shame, with poor family adaptability were found to be significantly more likely to experience affiliate stigma and have more depressive symptoms
	Chan and Lam (2017); Hong Kong, China	To test the associations of public stigma and courtesy stigma with depression, anxiety, and caregiving burden among parents of children with ASD and to explore whether trait mindfulness would moderate these associations	Quantitative cross-sectional questionnaire survey	Purposive sampling	424 parents of children with autism, most of whom were mothers (86.1%), married (87.5%), unemployed (63%) and had received a high school level of education (94.1%). Mean age of parents = 43.6 years; mean age of children = 10.41. Majority of children were male (83.3%), while 60.4% had an intellectual disability in addition to autism	Public stigma, courtesy stigma	Public stigma: The ‘Perceived Public Stigma Scale’ which contained 8 items adapted from Green (2001) Courtesy stigma: The ‘Perceived Courtesy Stigma Scale’ which contained seven items adapted from the Devaluation of Consumer Families Scale (Struening et al. 2001)	Depressive symptoms were measured using the 9-item ‘Patient Health Questionnaire’ (Kroenke et al. 2001) Anxiety symptoms were measured using the 7 item ‘Generalized Anxiety Disorder Scale’ (Spitzer et al. 2006)	Public stigma significantly positively correlated with depression (r = 0.27, p = < 0.001) and anxiety (r = 0.23, p = < 0.001) Courtesy stigma significantly positively correlated with depression (r = 0.32, p = < 0.001) and anxiety (r = 0.47, p = < 0.001)
	Chan and Lam (2018); Hong Kong, China	To examine the psychometric properties of a recently developed measure of self-stigma process, the Self-Stigmatizing Thinking’s Automaticity and Repetition Scale (STARS), among parents of children with autism	Quantitative cross-sectional questionnaire survey	Purposive sampling	Same as Chan and Lam (2017)	Self-stigma content and process	Self-stigma content: ‘Affiliate Stigma Scale’ (Mak and Cheung 2008) Self-stigma process: 8 item Self-Stigmatizing Thinking’s Automaticity and Repetition Scale (STARS) (Chan and Mak 2017)	Depressive symptoms were measured using the 9-item ‘Patient Health Questionnaire’ (Kroenke et al. 2001)	Self-stigma content and process both significantly positively correlated with depression (r = 0.45, p = < 0.001 and r = 0.61, p = < 0.001, respectively) Hierarchical linear regressions identified R2 = 0.2 (p = < 0.001) for self-stigma content independently predicting depression, and also R2 = 0.38 (p = <  0.001) for self-stigma content and self-stigma process both independently predicting depression
	Mak and Kwok (2010); Hong Kong, China	To investigate the relationships between social support, affiliate stigma and psychological well-being among parents of children with autism	Quantitative cross-sectional questionnaire survey	Purposive sampling	188 parents (mean age = 42.6 years), 84.3% of whom were female, 89.1% were married, and 72.8% had a secondary school educational level. 37.8% of their children also had an intellectual disability. 88.3% were male children	Courtesy stigma, affiliate stigma	Courtesy stigma—7 items from ‘Devaluation of Consumer Families Scale’ (Struening et al. 2001) plus following 2 items: “most people would not be friends with parents who have children with ASD” and “most people stigmatise parents of children with ASD” Affiliate stigma—‘Affiliate Stigma Scale’ (Mak and Cheung 2008)	Psychological wellbeing measured using the ‘Psychological Well-being’ subscale of the ‘Mental Health Inventory’ (Veit and Ware 1983)	Courtesy stigma and affiliate stigma significantly negatively correlated with psychological wellbeing (r = − 0.26, p = < 0.01, r = − .47, p = < 0.01)
	Wong et al. (2016); Hong Kong, China	To examine the associations between affiliate stigma, self-compassion, and psychological distress among Chinese parents of children with autism	Quantitative cross-sectional questionnaire survey	Purposive sampling	180 out of 600 parents participated (RR = 39%). Participants’ mean age was 42.3 years, 84.2% of whom were female, 87.2% married and 49.2% educated to senior secondary school level. Their children (n = 180; mean age = 9.8 years) were mostly male (84.2%) and mostly attended a mainstream school (54.7%)	Affiliate stigma	‘Affiliate Stigma Scale’ (Mak and Cheung 2008)	Psychological distress measured using the ‘Psychological Well-being’ subscale of the ‘Mental Health Inventory’ (Veit and Ware 1983)	Affiliate stigma significantly positively correlated with psychological distress (r = 0.44, p = < 0.01). Significant association between affiliate stigma and psychological distress among caregivers with low levels of self compassion (β = 0.26, t = 3.33, p < .01) but not among their counterparts with high levels of self-compassion (β = 0.02, t = 0.28, p = .78)
Middle-Eastern	Werner and Shulman (2013); Israel	To examine the relationship between affiliate stigma and caregivers’ subjective well-being among family caregivers of individuals with intellectual disability, autism or physical disabilities	Quantitative cross-sectional questionnaire survey	Purposive sampling	170 caregivers (mean age = 43.2 years), 78.8% of whom were female and 57.6% of whom described themselves as ‘secular’. Their children (n = 170; mean age =  1.9 years) were mostly male (61.8%) and mostly attended a special education school (63.5%). 32.9% had a diagnosis of autism, 22.4% intellectual disability and 27.1% a physical disability	Affiliate stigma	‘Affiliate Stigma Scale’ (Mak and Cheung, 2008)	Subjective well-being measured using the ‘Personal Well-being Index’ (International Wellbeing Group, 2006)	Affiliate stigma significantly negatively correlated with autism caregivers’ subjective wellbeing compared with other diagnoses (B = − 0.20, p < .05). Positive meaning in caregiving, self-esteem, social support and low burden buffered/protected against affiliate stigma’s relationship with negative subjective wellbeing among autism caregivers
	Dababnah and Parish, (2013); Palestinian Arabs living in the West Bank villages and refugee camps	To examine parents of children with autism’s knowledge, attitudes, burdens and coping strategies	Qualitative focus groups and one-to-one interviews	Purposive sampling	24 parents (20 mothers) of 24 children with autism aged between 4 and 17 years (mean age = 10 years), 16 of whom were boys. According to parents’ own characterisations, 7 children had ‘severe behavioural problems’, and 4 were ‘high functioning’	Public stigma, courtesy stigma (e.g. parent blaming), stigma from health professionals (e.g. being denied services), affiliate stigma (e.g. embarrassment and personal shame about their child’s condition)	Study authors’ interpretations	Study authors’ interpretations	Respondents mentioned frustration, anger and depression resulting from a child being denied services due to their autistic symptoms. These consistent frustrations weighed on parents. One mother described having chronic headache from her daughter’s condition. Some participants reported that they presented a stoic face to outsiders, but continued to silently suffer In total, these daunting financial psychological, and caregiving burdens led parents to feel confined to their homes, embarrassed about their child’s condition, and desperate for answers
	Crabtree (2007); Sharjah, United Arab Emirates	To explore the lived experience of care-giving families of children with developmental disabilities receiving specialised day services	Ethnographic approach utilising longitudinal qualitative semi-structured interviews	Purposive sampling	15 parents (mainly mothers) from diverse ethnic and socio-economic backgrounds. Four women were divorced or widowed. Age range of disabled children ranged from 4 to 16 years, just over half were boys. Six children were formally diagnosed with autism	Public stigma, courtesy stigma (‘mother blaming’) and stigma from health professionals	Study author’s interpretations	Study author’s interpretations	The experiences of stigma left Emirati women feeling vulnerable, including feelings of blacklisting by medical authorities that were “a source of tremendous stress and anxiety”. Some cases where parents’ piety led to the view that their child’s birth and disability were curses or punishments from Allah, leading to “feelings of hopelessness and depression and in some cases accompanied by covert or overt rejection of the child.”
	Dehvani et al. (2011); Isfahan and Shahr-e Kord cities, Iran	To investigate the relationship between internalised stigma in mothers and ‘autism quotient’ in relation to the mental health of mothers of children with autism	Quantitative cross-sectional questionnaire survey	Purposive sampling	95 mothers (mean age  = 29.5 years) of autistic children (mean age = 7.7) enrolled at a centre of special education, 79% of whom were male	Affiliate stigma	‘Affiliate Stigma Scale’ (Mak and Cheung 2008)	Depression, anxiety, somatic symptoms, and general mental health all measured using the General Health Questionnaire-28 (Goldberg, 1972)	Affiliate stigma significantly predicted general mental health (r = 0.54 [sig = 0.00], adjusted R2 = 0.27)
Western	Resch et al. (2010); Seven communities across a southwestern state in the United States	To identify specific sources of challenges related to raising a child with a disability as expressed by parents	Qualitative focus groups	Purposive sampling	40 parents (36 of whom were mothers) of mainly Anglo (n = 22) and Hispanic (n = 11) ethnicity living in urban (n = 15), rural (n = 13) and suburban (n = 11) communities. Eight of this cohort’s described their child’s ‘primary disability’ to be autism, and the majority stated their children’s primary classroom setting to be ‘regular’ (n = 17) or ‘self-contained’ (n = 18)	Public stigma, school and community social exclusion	Study authors’ interpretations confirmed by parent representatives in a respondent validation exercise. The interview guide included the directly relevant questions about stressors and challenges	Study authors’ interpretations confirmed by parent representatives in a respondent validation exercise. The interview guide included the directly relevant questions about stressors and challenges	The experience of school and community exclusion including the adverse reactions of some in the community to having their children included in community activities was one of four major themes that the authors identified as influencing parent wellbeing (and supported during the respondent validation exercise), a concept the authors define in the study as including mental health
	Broady et al. (2018); Sydney and the South Coast regions of New South Wales, Australia	To investigate the lived experience of stigma among carers of children with high functioning autism	Qualitative exploratory semi-structured one-to-one interviews	Convenience sampling	15 carers (9 female, 6 male) of children diagnosed with HFA. 12 participants were married, 1 participant was separated and 2 were divorced. Their children were aged from 5 to 19 years (mean age = 10 years). The time since receiving a diagnosis of HFA ranged from 6 months to 11 years (mean = 4.86 years, SD = 3.79 years)	Public stigma, courtesy stigma, professional (school teachers)	Study authors’ interpretations	Study authors’ interpretations	Felt and enacted stigma was experienced through rejection and judgement from family and friends which was particularly hurtful. Rejection from wider public was often met with a sense of anger, while rejection from family and friends led to a much more significant and emotionally charged impact, leading carers’ to alter behaviour through strategies such as social withdrawal. Authors conclude that perceptions of stigma are associated with poor subjective wellbeing
	Gray (2002); Brisbane and its adjacent coastal regions, Australia	To examine the social experiences of families of children with autism	Ethnographic approach utilising retrospective longitudinal qualitative semi-structured interviews	Purposive sampling from a cohort who had previously participated in a quantitative survey and qualitative study 10 years prior	28 parents (19 mothers and 9 fathers representing 20 families) of 20 individuals with autism (13 males), aged 13 to 27 years. 8 were attending a special school, 8 were receiving community service support, 2 were in residential care and 2 were not receiving any services	Public stigma, courtesy stigma (e.g. grandparents blaming parents)	Study author’s interpretations	Study author’s interpretations. The interview schedule included a directly relevant question about “the effects of the situation on the parent’s health”	Parents were still being affected by depression, anxiety and anger associated with “substantial amounts of self-reported psychological distress” among parents but particularly among mothers. The study author interprets this as partly due to an “increased exposure to negative social reactions by outsiders.” However, compared to their experiences 10 years previously, many parents had become less “sensitive to the reactions of outsiders and find stigmatizing behaviors less threatening to their self-esteem. Although several parents claimed that social rejection still disturbed them when it occurred, it did not seem to have the emotional impact on them that it did previously”