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International Journal of Developmental Disabilities logoLink to International Journal of Developmental Disabilities
. 2021 May 10;68(6):924–932. doi: 10.1080/20473869.2021.1924032

A model of internalized stigma in parents of individuals with disabilities

Marija Čolić 1,✉,†, Sarah Dababnah 2, Ivona Milačić-Vidojević 1
PMCID: PMC9788690  PMID: 36568618

Abstract

Background: Stigma has negative impacts on both individuals with disabilities and their caregivers, including poor mental health and social isolation. In the present study, we aimed to test a model of stigma internalization among parents of individuals with disabilities, as this process in not yet completely understood.

Aim: Specifically, we explored effects of experienced stigma and neuroticism on affiliate stigma and examined whether perceived stigma and self-blame are mediators in a stigma internalization model.

Methods: We recruited 82 parents of individuals with disabilities in Serbia over the course of six months. Parents were asked about perceived stigma, experienced stigma, affiliate stigma, self-blame, and they completed an assessment of personality traits.

Results: Both experienced stigma and neuroticism were positively correlated with affiliate stigma. In addition, perceived stigma was a mediator between these variables: parents who experienced stigma more and had higher neuroticism scores reported higher degrees of perceived stigma, which in turn positively affected affiliate stigma. Self-blame was not a significant mediator in the tested model.

Conclusion: We conclude stigma internalization among parents of individuals with disabilities is a complex process, involving experienced stigma, neuroticism, and perceived stigma. Interventions should include multiple paths to adequately support parents to combat stigma.

Keywords: affiliate stigma, experienced stigma, neuroticism, perceived stigma, self-blame, self-stigma, disability, parents

Introduction

Stigma is “an attribute that is deeply discrediting, but it should be seen that a language of relationships, not attributes, is really needed” (Goffman 1963, p. 3). Goffman proposed that not only individual person face stigma, but also others who hold some relationship to the stigmatized person. While most studies focused on stigma are from the mental health field, there is growing interest in stigma facing parents of children and adults with disabilities (see Ali et al. 2012, Mazumder and Thompson-Hodgetts 2019, for a review). Yet, very little research has examined models of stigma internalization among parents (Eaton et al. 2020, Mak and Kwok 2010).

Since Goffman’s theoretical work, subsequent researchers and scholars have outlined several types of stigma, including perceived stigma, experienced stigma, and affiliate stigma. Researchers have noted that parents of children and adults with disabilities experience these different types of stigma as well (Francis 2012, Gray 2002). Perceived stigma is a parent’s belief of the general public’s negative attitudes towards themselves and their child [Čolić and Milačić Vidojević, 2021] while experienced stigma includes parent’s reports of discrimination encountered in different social situations (Smythe et al. 2020). Self-stigma, a term used mainly in the mental health field, is an individual’s internalization of negative attitudes that exist in a cultural context towards members of a group with which that individual identifies (Corrigan and Watson 2002).

Although some researchers use self-stigma to describe stigma internalization in parents of individuals with disabilities (e.g. autism; Chan and Lam 2018), the majority of studies apply the term affiliate stigma to describe the process of parental stigma internalization. Mak and Cheung (2008) introduced the concept of affiliate stigma, which refers to self-stigma (i.e. internalized stigma) of caregivers of individuals with disabilities. Hence, both self-stigma and affiliate stigma apply to the processes of awareness and application of negative societal attitudes. The difference is that self-stigma develops in the person who possess stigmatized attributes, whereas affiliate stigma forms in the people (i.e. affiliates) who are in close contact with the person that faces stigma (e.g. parents, close friends). Affiliates do not necessarily carry separate characteristics that are perceived negatively. We will use these conceptualizations throughout the current paper and refer to the affiliate stigma when discussing internalized stigma among parents of individuals with disabilities, and to self-stigma when discussing internalized stigma among people with mental illnesses and/or their caregivers.

Affiliate stigma consists of “three interlocking components: cognitions, affect and behavioral responses” (Mak and Cheung 2008, p. 533). Because of their close relationship with a stigmatized child, parents may experience depression, adverse behaviors, and social isolation. Affiliate stigma has a negative effect on parental quality of life and mental health (Mak and Cheung 2008, Mak and Kwok 2010), and increases parental stress and depression (Charbonnier et al. 2019, Li et al. 2019, Lovell and Wetherell 2019, Zhou et al. 2018). Despite data showing the negative effect of affiliate stigma on parents of individuals with disabilities, little research has explored how this type of stigma develops in this group. Mak and Kwok (2010), for example, aimed to answer this question with a sample of parents of children with autism spectrum disorder (ASD). Using a path analysis, the authors examined the effects of perceived stigma, responsibility and self-blame, and other predictors on affiliate stigma. Their results showed a direct positive relationship between perceived and affiliate stigma. Additionally, the authors found that perceived stigma also had an indirect effect on affiliate stigma, in that parents who perceived more stigma felt more self-blame and responsibility for their child’s condition, and consequently internalized stigma. Conversely, perceived stigma had a negative effect on perceived controllability, which in turn negatively affected affiliate stigma.

Other research has also examined stigma internalization among parents. Eaton et al. (2020) found that stigma awareness (i.e. parents’ perceived stigma) had a direct positive effect on self-doubt, which in turn positively affected self-stigma. That is, parents who perceived more stigma had greater self-doubt, and consequently internalized stigma. Although this study was done with the parents of children with mental health disorders who often experience doubt whether they are good parents (Eaton et al. 2020), it gives a valuable information on the role of perceived stigma in stigma internalization.

In total, findings from studies involving parents of children with mental health disorders and ASD (Eaton et al. 2020, Mak and Kwok 2010) demonstrate the important role of perceived stigma in affiliate stigma formation. Both studies showed that the relationship between perceived stigma and affiliate stigma was mediated by self-doubt (Eaton et al. 2020) and self-blame/responsibility and perceived controllability (Mak and Kwok 2010). However, there continues to be a large gap in the literature on the processes of perceived stigma development.

The preponderance of research on stigma development have focused on adults with mental illnesses. Studies have found that experienced stigma had a role in a perceived stigma development (Quinn et al. 2015), as well as relationship with self-stigma among individuals with mental illnesses (Drapalski et al. 2013, Muñoz et al. 2011). One group of researchers (Aukst Margetić et al. 2012) proposed that a rigorous model describing stigma internalization in people with mental illnesses should account for personality traits. The authors further argued the importance of personality differences in understanding stigma development, particularly neuroticism.

Studies in various fields have found personality traits, which are generally stable over time, are relevant in how a person reacts to stigma (Bassirnia et al. 2015, Margolis et al. 2018), with neuroticism commonly cited as an important factor in mental health (Lahey 2009). People high on neuroticism scales are more likely to blame themselves for their failures, feel ashamed and embarrassed, be sensitive to criticism, perceive a situation negatively, and cope inadequately with stress (Watson et al. 1994). Bassirnia et al. (2015) found that people with epilepsy who were high on a neuroticism scale were more likely to report perceived stigma, which in turn negatively affected their quality of life. Furthermore, Borecki and colleagues (2010) showed a positive relationship between neuroticism with perceived stigma and self-stigma in people with depressive disorder. Yet, to our knowledge no studies have explored the effect of personality traits such as neuroticism among parents of individuals with disabilities, despite research finding parents of children with ASD (Snow and Donnelly 2016) and cerebral palsy (Jankowska et al. 2015) reported higher levels of neuroticism compared to parents of typically developing children.

Based on this body of research, we aimed to fill a gap in the research by examining stigma internalization in Serbian parents of individuals with disabilities. Affiliate stigma is understudied in Eastern European context (Čolić et al. 2019), although existing data show that caregivers experience different types of stigma (Buljevac and Leutar 2017, Čolić and Milačić-Vidojević 2021, Daniels et al. 2017). Specifically, we aimed to analyze the effects of experienced stigma, neuroticism, perceived stigma, and self-blame on affiliate stigma. We hypothesize that parents who experience stigma and who are higher on neuroticism will also report a greater level of perceived stigma, which in turn will be associated with stigma internalization. Moreover, we hypothesize that self-blame will be mediator between perceived stigma and affiliate stigma. Finally, we hypothesize a direct effect of experienced stigma and neuroticism on affiliate stigma.

Methods

Participants

A total of 82 caregivers of individuals with physical disabilities (PD) and ASD participated in the present study (see Table 1). The parents were between ages 32 and 71 (M = 45.96, SD = 8.89), while their children were between 4 and 48 years (M = 16.83, SD = 9.75). The majority of the sample were mothers (90.2%) and most of the caregivers had a male child (70.7%). In PD group, we included parents whose children had functional motor limitations. The most frequent diagnosis in the PD group was cerebral palsy (64.3%), followed by quadriparesis (7.1%), hemiparesis (7.1%), scoliosis (4.8%), Duchenne muscular dystrophy (2.4%), paralysis plexus brachialis (2.4%), paraplegia (2.4%), Freeman-Sheldon syndrome (2.4%), multiple disabilities and Rett syndrome (2.4%), mixed specific developmental disorder (2.4%), and hypotonia (2.4%).

Table 1.

Demographics of the sample (n = 82)

Demographics PD ASD Differences between groups
Age – parent M = 46.78, SD = 9.16 M = 45.13, SD = 8.63 t (79) =0.837
Age – child M = 18.52, SD = 10.39 M = 15.1, SD = 8.84 t (78) = 1.559
  Frequency (%) Frequency (%)  
Gender – parent (Female) 39 (92.9) 35 (87.5) χ2(1) = 0.668
Gender – child (Male) 24 (57.1) 34 (85.0)  
Educational level     χ2(1) = 5.455*
 High school 28 (68.3) 17 (42.5)
 College/Graduate degree 13 (31.7) 23 (57.5)
Marital status     χ2(1) = 0.448
  Married, live with a partner 28 (68.3) 30 (75)
 Does not live with a partnera 13 (31.7) 10 (25)
Monthly income     χ2(2) = 7.315*
 High 4 (9.8) 12 (30)
 Average 17 (41.5) 18 (45)
 Low 20 (48.8) 10 (25)
Co-morbidity – Yes 16 (38.1) 8 (20.0) χ2(1) = 3.515
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Note. M – mean, SD – standard deviation.

a

Three groups were merged (single, divorced, widowed) because of the small number of participants in each group.

**

< .01,

*

< .05.

Study design and procedure

The University of Belgrade approved the study. The first author recruited parents through parental support associations, schools for children with special needs, and word-of-mouth across the Republic of Serbia. We collected data over a six-month period (June to December 2018). Although 114 invitational emails with the description of the study were sent, only seven associations and two schools agreed to participate in the research (8% response rate). The response rate was higher when first author visited schools and associations in person (85.7% response rate out of seven visited) or contacted them via telephone (40% response rate out of ten contacted).

The first author emailed a link to online questionnaires or mailed a packet of the measures with a self-addressed postage-paid envelope to the association’s or school’s representative. Both online and printed packets contained study information, informed consent document, and questionnaires. Parents of individuals with ASD and PD had identical questionnaires except that the questions included either the term ASD or PD. The associations that support families of individuals with different types of physical disabilities received the link or packets with PD questionnaires, while associations that support families of individuals with ASD received the packets or link with ASD questionnaires. In addition, the school distributed either ASD or PD packet to the families that were interested in study based on a child’s official diagnosis. To protect confidentiality, we did not request parents provide any personal information or their signature, but they affirmed their consent to participate by completing the questionnaires. The parents who wanted to be included into a prize drawing (ten monetary incentives of $20 each) entered their email address at the end of survey. We received 57 printed out of the 196 sent (29.1% response rate). We could not confirm how many families received the link of the online questionnaires and therefore cannot calculate the response rate.

In order to include only parents of individuals with ASD or PD in a study, we implemented a three-way process of diagnosis confirmation: 1) we wrote in the invitation letter that we are recruiting only parents of individuals with ASD or PD; 2) in the sociodemographic questionnaire, we asked the parents whether the diagnosis of ASD or PD was given by a medical professional; and 3) we requested the parents write an official diagnosis that the medical professional gave to their child. In our final sample we included responses if parents indicated that medical professionals gave either ASD or PD diagnosis and they completed either ASD or PD questionnaires based on a diagnosis they disclosed.

Measures

In addition to child and parent sociodemographic variables, we collected five measures. First, we used the Parental Perceptions of Public Attitudes Scale (Čolić and Milačić Vidojević 2021) to measure parental perceived stigma. The scale uses a five-point Likert scale, where a higher score suggests a greater degree of perceived stigma. The scale consists of nine items, grouped into two factors: 1) parental blame and 2) child characteristics. The Parental Blame subscale measures parents’ beliefs about negative public attitudes towards parents and family. The second subscale explores parental perception about public attitudes towards their children. The scale showed good model fit indices (χ2/df = 1.015, p = .44, TLI = .99, CFI = .99, RMSEA [90% CI] = .01, and SRMR = .05) as well as internal consistency (Cronbach’s α = .873).

We used the Affiliate Stigma Scale (ASS; Mak and Cheung 2008) to examine parental affiliate stigma. Higher ASS scores indicate a greater level of affiliate stigma. The ASS consists of three subscales (affective, cognitive, and behavioral) and has good internal consistency (Cronbach’s α = .95; Mak and Cheung 2008). The first author and a psychologist colleague translated the scale into Serbian independently of each other. Afterwards, they discussed the translations and agreed upon a translation. Then, a professional translator back-translated the scale into English. During back-translation there was one discrepancy compared to the original translation; the item “The behavior of my family member with ASD is embarrassing” was translated to “The behavior of my child with ASD is disgraceful”. We obtained consent from Dr. Mak to use the ASS in the present study with the revised item.

We developed the Parental Self-Blame Scale (PSBS; Čolić and Milačić Vidojević 2019] to measure self-blame in parents of individuals with disabilities. The PSBS is a unidimensional, five-point Likert scale in which a higher score indicates a greater degree of self-blame. The PSBS examines the degree to which parents blame themselves because of their child’s condition. The PSBS demonstrates good fit indices (χ2/d f = 1.18, p = .29, TLI = .93, CFI = .96, and RMSEA [95% CI] = .05), and acceptable internal consistency (Cronbach’s α = 0.62).

The Big Five Inventory (BFI; John and Srivastava 1999) is a freely available 44-item questionnaire measuring five personality traits. It is a five-point Likert scale, ranging from 1 (strongly disagree) to 5 (strongly agree). Previous research showed good internal consistency for each trait (from .79 to .88; John and Srivastava 1999). Internal consistencies in the present study were slightly lower than previously reported: .72 for neuroticism, .71 for extraversion, .71 for conscientiousness, .69 for agreeableness, and .68 for openness. The first and third authors translated the scale into Serbian independently of each other. Afterwards, we discussed both translations and agreed upon a final translation.

Finally, we used the Experienced Stigma Scale (Čolić and Milačić Vidojević 2020) to measure stigma that parents experienced in everyday encounters. It is a five-point eight-item Likert scale where higher scores indicate a greater level of experienced stigma. The scale consists of two subscales: personal stigma experience and lack of professional support. The scale showed good model fit indices (χ2/d f = 1.314, p = .162, TLI = .97, CFI = .98, RMSEA [95% CI] = .06, and SRMR = 0.06) as well as internal consistency (Cronbach’s α = .80; .86 for the Personal Stigma Experience subscale and .76 for the Lack of Professional Support subscale).

Proposed stigma internalization model

Based on extant literature concerning the effects of parental perceived stigma and self-blame on affiliate stigma (Eaton et al. 2020, Mak and Kwok 2010), as well as effects of neuroticism and experienced stigma among people with mental illnesses and epilepsy on perceived stigma and self-stigma (Bassirnia et al. 2015, Borecki et al. 2010, Drapalski et al. 2013, Muñoz et al. 2011, Quinn et al. 2015), we proposed the following model of stigma internalization in parents of individuals with disabilities as presented in Figure 1:

Figure 1.

Figure 1.

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Proposed model of stigma internalization in parents of individuals with disabilities.

Data analyses

In order to examine correlations between affiliate stigma with experienced stigma, neuroticism, perceived stigma, and self-blame, we first conducted a bivariate correlation analysis. We included all variables that were significantly correlated with affiliate stigma in the structural equation model (SEM). We analyzed the direct and indirect effects in the model using maximum likelihood estimation via Analysis of Moment Structure (AMOS) Version 23.0. To test a mediation effect (i.e. if indirect effects were significant), we used the Specific Indirect Effects plugin with bootstrapping for AMOS 23.0 (Gaskin and Lim 2018). We used several goodness of fit indices to determine how well the model fit the data: the χ2, ratio between the χ2 value and degrees of freedom, Tucker Lewis Index (TLI), comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean square residuals (SRMR). We set the following parameters as a satisfactory goodness of fit: χ2/df between 1.0 and 3.0, TLI > .95, CFI > .95, RMSEA < .06, and SRMR < .08 (Drasgow et al. 1995, Hu and Bentler 1999). Also, although some scholars propose that sample sizes of at least 100 participants are needed to run accurate SEM analyses (e.g. Kline, 2015), simulation studies have shown adequate fit indices and power in a sample of 70 to 80 participants (Sideridis et al. 2014). Additionally, there are several studies that applied SEM in samples smaller than 100 participants (e.g. Altschuler et al. 2018, Dieleman et al. 2019, McIntyre et al. 2017).

Our model examined the direct and indirect effects of experienced stigma, neuroticism, and perceived stigma on affiliate stigma. Additionally, we tested if perceived stigma mediated the association between neuroticism and experienced stigma with affiliate stigma. Lastly, we tested a serial mediation between neuroticism and experienced stigma, through perceived stigma, self-blame to affiliate stigma.

Results

We collected 104 questionnaires in total; however, we did not include 22 due to missing data or if the child did not have ASD or PD. In our final sample of 82 parents, we found significant differences between parents of individuals with ASD and those with PD in educational level, monthly income, and child gender (see Table 1). The missing data (ranged from 0 to 6.1%) were imputed using median values. Both skewness and kurtosis values for variables of interest were in acceptable range (0.233 to 0.702 and −0.053 to −0.740, retrospectively; Ghasemi and Zahediasl 2012).

Relationship between variables

As shown in Table 2, we found a significant positive relationship between affiliate stigma and experienced stigma, perceived stigma, self-blame, and neuroticism. Furthermore, we found a significant positive relationship between perceived stigma and experienced stigma, self-blame, and neuroticism; and a negative association between perceived stigma and extraversion. In addition, we found a significant negative association between self-blame and extraversion, agreeableness, and conscientiousness. Finally, we examined associations between affiliate stigma and sociodemographic characteristics, but we did not find any significant relationships.

Table 2.

Bivariate correlations between variables

  2 3 4 5 6 7 8 9
1. Affiliate stigma .46** .29** .56** −.18 −.07 −.13 .43** −.02
2. Experienced stigma   .16 .66** −.18 −.04 −.11 .13 −.09
3. Self-blame     .22* −.29** −.31** −.26* .20 −.04
4. Perceived stigma       −.25* −.21 −.12 .29** −.05
5. Extraversion         .31** .38** −.21 .36**
6. Agreeableness           .27* −.32** −.02
7. Conscientiousness             −.24* .44**
8. Neuroticism               −.12
9. Openness               –
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Note.

**

p < 0.01,

*

p < 0.05.

Trajectory of exogenous and mediator variables toward affiliate stigma

Our next step was to examine proposed model of stigma internalization by analyzing effects of variables that were associated with affiliate stigma. The path model (Figure 2) showed a good model fit with the following fit indices: χ2(df) = 2.511(2), χ2/df = 1.255, p = .285, TLI = .971, CFI = .994, RMSEA [95% CI] = .056, and SRMR = .0419. The direct paths from 1) experienced stigma to affiliate stigma; 2) neuroticism to affiliate stigma; and 3) perceived stigma to affiliate stigma were significant. Subsequently, perceived stigma was a significant mediator between 1) neuroticism and affiliate stigma; and 2) experienced stigma and affiliate stigma (see Table 3). As both neuroticism and experienced stigma had significant direct and indirect effects on affiliate stigma, perceived stigma partially mediated these relationships. We did not find a significant direct or mediating effect of self-blame on affiliate stigma. The variables in the model explained 41% of the variance in affiliate stigma, 46% of the variance in perceived stigma, and 2% of the variance in self-blame.

Table 3.

Indirect effect parameters in the model

Indirect paths UE Lower Upper p SE
Experienced stigma –> Perceived stigma –> Self-blame .02 -.01 .06 .24 .08
Experienced stigma –> Perceived stigma –> Affiliate stigma .12 .06 .21 .00 .19**
Neuroticism –> Perceived stigma –> Self-blame .01 -.00 .04 .17 .03
Neuroticism –> Perceived stigma –> Affiliate stigma .06 .02 .12 .00 .07**
Perceived stigma –> Self-blame–> Affiliate stigma .01 -.00 .04 .19 .02
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Note. UE = Unstandardized Estimate, SE = Standardized Estimate.

Figure 2.

Figure 2.

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Mediation effect of perceived stigma and self-blame between experienced stigma and neuroticism with affiliate stigma. Note. Solid lines indicate statistically significant paths, while dashed lines indicate paths that are not statistically significant. Numbers along the lines indicate standardized path coefficients. The numbers in the upper right indicate the percentage of variance explained by the model variables. ***p < 0.001, **p < 0.01, *p < 0.05.

Based on the standardized total effects (see Table 4), experienced stigma had the largest effect on affiliate stigma, followed by neuroticism, and perceived stigma.

Table 4.

Standardized total effects

  Neuroticism Experienced stigma Perceived stigma Self-blame
Perceived stigma .235 .601 .000 .000
Self-blame .030 .076 .127 .000
Affiliate stigma .338 .426 .329 .118
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Metric invariance

The last step consisted of testing the invariance of the model between the two groups. We performed the multi-group analysis with a fixed variance of 1 on the latent factors. The p-value was 0.445 at the weighted measurement model (χ2 = 6.851, df = 7), indicating invariance at the metric level. That is, a model of stigma internalization did not differ between groups.

Discussion

The aim of the present study was to test models of stigma internalization among parents of individuals with disabilities. In line with previous research (Eaton et al. 2020, Mak and Kwok 2010) we found that perceived stigma has an effect on stigma internalization. Our study expands current findings as it showed that in process of stigma internalization, two more factors are involved: experienced stigma and neuroticism.

Results confirmed the hypothesis that both neuroticism and experienced stigma are associated with affiliate stigma, which is in accordance with the research with people with mental illnesses (Drapalski et al. 2013, Muñoz et al. 2011). That is, parents who experienced more stigma or have higher levels of neuroticism showed greater affiliate stigma. Furthermore, we found that perceived stigma mediates the relationship between neuroticism and experienced stigma with affiliate stigma. This is a novel finding, as it shows that parents who experienced stigma more, or who have higher levels of neuroticism perceived stigma to a greater degree, which contributes to stigma internalization. It seems that parental perceptions of public negative attitudes towards their child and themselves (i.e. perceived stigma) significantly depends on whether parents experienced stigma in society. That is, negative experiences such as avoidance from friends, lack of professional support, and hurtful words can lead to the development of perceived stigma. Furthermore, our findings confirmed previous research that showed parents avoided different social situations (avoidance is considered the behavioral component of affiliate stigma; e.g. “I avoid going out with my family member who has ASD”) if they perceived negative reactions and attitudes from others (Broady et al. 2017, Durrant 2000, Harandi and Fischbach 2016). Our results also aligned with Green’s study (2003) that found mothers felt more embarrassed, worried, and unhappy (negative feelings considered manifestations of the affective component of affiliate stigma; e.g. “I feel sad because I have a family member with ASD”) if they believed that their children are devalued in the community. Our study extends these findings, as we found strong effects of experienced stigma in the process of stigma internalization through perceived stigma; and also that experienced stigma affects not only the behavioral component of affiliate stigma, but also parental cognitions and emotions. Simply stated, parents who experienced stigma to a greater degree were more likely to withdraw from social relationships, feel sad and helpless, and report more personal worthlessness because their child had a disability.

One aspect we want to highlight is that not all parents who experience stigma exhibit avoidant and passive reactions (Broady et al. 2017, Harandi and Fischbach 2016). A study of parents raising children with ASD found that 52% of the sample applied active response strategies, while 24% used passive response strategies (i.e. avoidance) when faced with hurtful statements (Harandi and Fischbach 2016). Broady et al. (2017) also reported that parents used these strategies as a reaction to stigma.

Different factors could play a role in individual responses to stigma, including personality traits such as neuroticism. As discussed earlier, people who are high on neuroticism are more vulnerable to environmental variables, and often respond with negative emotions to stress and criticism (Lahey 2009, Watson et al. 1994). Therefore, it is imaginable that parents who are high on neuroticism are more likely to perceive negative community attitudes and consequently internalize stigma. Thus, parents who have more expressed neuroticism are at greater risk to develop affiliate stigma, and potentially to alienate themselves from others and their child, and feel unhappy and helpless.

Some literature has outlined ways in which clinicians can be sensitive to parent personality traits when supporting individuals with disabilities. Naletilić and associates (Naletilić et al. 2017) proposed a protocol to support parents of individuals with cerebral palsy. The authors included a parent psychological assessment in this protocol, as well as steps to take if someone is high on neuroticism and psychoticism. For example, they suggested that mothers of individuals with cerebral palsy with high scores on neuroticism or psychoticism be referred to a psychiatrist or psychotherapist for additional support. Similarly, Lahey (2009) suggested that clinicians need to determine whether an individual is high on neuroticism during routine examinations, because it has been shown to be a risk factor for the development of depression and chronic diseases. An individual with a high score should be monitored and supported as soon as the first signs of an illness are noticed.

Contrary to our initial hypothesis, we were not able to find evidence that self-blame has a role in stigma internalization. Although self-blame and affiliate stigma had a positive Pearson’s correlation, when self-blame was added into the model as a mediator between perceived stigma and affiliate stigma, its effect on affiliate stigma was not significant. The parental self-blame scale measures whether parents hold themselves culpable for their child’s condition, child’s level of functioning, and maladaptive behavior. It could be that parents attributed their child’s problem behavior and level of functioning to the condition itself (Hartley et al. 2013) instead of blaming themselves. That is, if parents see the child’s difficulties as unrelated to the quality of their parenting, they would have less negative thoughts about themselves and their child, and consequently this aspect would not have a role in stigma internalization.

Limitations

Although this study offers novel findings related to role of experienced stigma and neuroticism in stigma internalization process, several limitations are worth noting. As discussed in the methods section, while numerous studies have suggested samples smaller than 100 are adequate for SEM analyses (e.g. Altschuler et al. 2018, Dieleman et al. 2019, McIntyre et al. 2017, Sideridis et al. 2014), some scholars proposed 100 as a minimum for implementing SEM (e.g. Kline 2015). Further, we included only parents of individuals with ASD and PD, so generalization to parents of individuals with other types of disabilities (e.g. Down syndrome, ADHD) might be limited. Future research could apply the same model to examine stigma internalization among parents of individuals with different diagnoses. Moreover, although we tested the metric invariance of the model between the two groups, we had a small number of the participants in both groups. Therefore, these findings should be interpreted with caution. Future research with a larger sample could examine if the model of stigma internalization is the same or different across parents of individuals with ASD and PD. Additionally, as some of the measures we used in this study were validated on our sample only, future studies should validate these instruments with more diverse samples. Further, we acknowledge that back-translation of the BFI would have been more rigorous and reliable. Lastly, as this is a cross-sectional study, we cannot make causal inferences. Prospective studies can implement a longitudinal design and examine these relationships further.

Conclusion

Our study showed that experienced stigma, neuroticism, and perceived stigma play a role in stigma internalization among parents of individuals with disabilities. That is, parents who experienced more stigma and had higher scores on neuroticism reported higher perceived stigma which in turn positively affected affiliate stigma.

As experienced stigma had strong effects on both perceived stigma and affiliate stigma, it is important to work on increasing public awareness about the characteristics of ASD and PD. For example, public events can include people with disabilities, so community members have opportunities to interact with individuals with different abilities and learn more about their strengths. Also, educational television shows, such as Sesame Workshop: See Amazing in All Children, can contribute to positive changes in the general parent community (Anthony et al. 2020). Online trainings can increase knowledge and decrease stigma towards people with ASD (Gillespie-Lynch et al. 2015). Inclusive education and peer mentoring programs could also help typically developing peers to learn about children with developmental disabilities and support their participation in social events and school (Bradley 2016, Carter et al. 2017).

Further, it is important to support parents who have high scores on neuroticism (Lahey 2009, Naletilić et al. 2017). As people who have high neuroticism have a stronger reaction to stress and perceive situations more negatively (Watson et al. 1994), parents could be supported through psycho-social programs. For example, preliminary evidence showed that Stigma of Living as an Autism Carer intervention could be effective for the reduction of affiliate stigma and improvement of mental health (Lodder et al. 2020). In summary, as different factors are associated with stigma internalization, interventions should target multiple aspects of this process (Drapalski et al. 2013).

Acknowledgements

The authors would like to thank parents and organizations for their time and participation in the research study.

Conflict of interest

No potential conflict of interest was reported by the authors.

Source of funding

No external funding was received for the research reported in the paper.

Geolocation information

Eastern and Southeast Europe.

References

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