Clarification of stigma concepts in research with families of individuals with neurodevelopmental disabilities

Abstract

Stigma concepts among families of individuals with neurodevelopmental disabilities have received increased attention from researchers in the past decade. With a growing number of studies published, there are also notable discrepancies in conceptualizations and uses of stigma terms among scholars. These variations may result in inadequate comparisons of findings across studies and a failure to generalize the results. Therefore, I have compared various stigma concepts and offered key features of each term as well as suggested methodology for facilitating stigma research.

Introduction

Scholars may encounter a certain amount of disagreement on the use of various concepts of stigma. In research, technical issues with methodology make comparison of the findings across studies challenging. Thus, in the present article, several stigma concepts are described and briefly discussed the overall meaning of each. The article is written from the perspective of research involving the families of individuals with neurodevelopmental disabilities (hereafter referred to as the ‘disabilities’), such as autism and intellectual disabilities (although I recognize that not all conditions are considered disabilities; see Vivanti 2020 for further discussion).

Goffman (1963) was the first sociologist to conceptualize stigma as a sociological phenomenon in his classic book Stigma: Notes on the management of spoiled identity. He described stigma as the attribute(s) that one possesses which discredits an individual in a specific context and spoils one’s identity through its relationships with stereotypes. Stigma includes three components: stereotype (negative beliefs about a stigmatized group), prejudice (agreement with negative beliefs and/or negative emotional responses to a member of the stigmatized group) and discrimination (negative behavior to prejudice) (Corrigan and Watson 2002). Goffman understood that not only does a person with discrediting attributes bear a stigma, but so do the people with whom s/he is in close contact. Specifically, the individual can be stigmatized not because of his/her own characteristic but rather by virtue of relationship with a stigmatized individual (Goffman 1963). Goffman referred to this stigma that they bear as a courtesy stigma. The parents of individuals with disabilities might also be stigmatized, as they are ‘obligated to share some of the discredit of the stigmatized person to whom they are related’ (Goffman 1963, p. 30). It is important at this point to highlight that no person with disability nor their family members should be considered as less valued or worthy than other members of society; on the contrary, people with unique characteristics make this world a richer place and strengthen us all through diversity.

To the best of my knowledge, Goffman’s stigma theory was first embraced and empirically explored with the families of individuals with disabilities by the sociologist Birenbaum (1970). However, in the three decades after Birenbaum’s original research only a few studies were conducted specifically targeting stigma among parents (e.g. Baxter 2008, Gray 1993). Since 2000, and particularly in the last decade, there has been a steady increase in the number of studies on parental stigma (see Liao et al. 2019, Mazumder and Thompson-Hodgetts 2019, Mitter et al. 2019). Over the two decades, the concept of stigma has diversified, and its various meanings and terms have caused an issue in comparing studies. For example, it is not uncommon in literature to see that scholars use different names to describe the similar stigma concepts or use the same term to describe different stigma concepts (see also Fox et al. 2018 in mental illness stigma literature). In a sense, two studies might use a term courtesy stigma to refer to two different concepts (e.g. internalized stigma versus perceived stigma). Without clear stigma conceptualization, results generalization and comparison across multiple studies would likely be difficult. This confusion in stigma conceptualization creates a challenge comparing data across studies. With an increasing amount of research conducted over the past ten years on stigma in parents of individuals with disabilities, it is now more important than ever to discuss the various types of stigma conceptualization and to improve the methodological aspect of the stigma research. Thus, this article aims to clarify and compare stigma concepts that are the most frequently explored among families of individuals with disabilities (Liao et al. 2019, Mazumder and Thompson-Hodgetts 2019, Mitter et al. 2019). In the next sections I will describe each type of stigma (see Figure 1). And then in the following section, I will clarify confusions among similar stigma types. In the last section, I will propose a methodology for researching specific stigma concepts.

Figure 1.

Stigma representation in families of individuals of disabilities.

Courtesy stigma

As noted earlier, Goffman (1963) acknowledged that persons in a close relationship with a stigmatized individual, like parents, bear a stigma which he named a courtesy stigma. Some researchers referred to it as an associative stigma (Mehta and Farina 1988) or a family stigma (Phelan et al. 1998). The most inconsistencies in the stigma research among families of individuals with disabilities are evident in the conceptualization of courtesy stigma. For example, in some studies, a term courtesy stigma has been used to reflect the concept of parental perceived stigma (Mak and Kwok 2010) or parental experienced stigma (Koro-Ljungberg and Bussing 2009, Tekola et al. 2020, Turner et al. 2007), while other researchers used the term affiliate stigma interchangeably with courtesy stigma (Hamlington et al. 2015, Patra and Patro 2019, Salleh et al. 2020). Mitter et al. (2019) also noticed that studies included in their review did not differentiate between the terms affiliate and courtesy stigma. Clearly, the application of the same term to reflect different stigma concepts makes the comparison of the findings problematic, if not, impossible.

Following Goffman, I would suggest keeping courtesy stigma as a broad concept that can be reserved as a generic term for stigma surrounding families (see Figure 1). Courtesy stigma is identified as a product of a relationship between stigmatized and the stigmatizer (Birenbaum 1970, Moses 2014) that affects families of individuals with disabilities in pervasive ways (Green 2003). In a sense, courtesy stigma as a social product is a general term referring to this relationship. The nature of this relationship can be considered as different types of stigma that parents experience. Thus, courtesy stigma represents a general family stigma experience rather than a specific, operationally defined concept. Courtesy stigma is in broad use, and it seems wise to apply the term to a broader family perspective instead of using it for a specific type of stigma (e.g. perceived stigma).

Experienced stigma

Experienced stigma, also named enacted stigma (e.g. Farrugia 2009, Gray 2002, Scambler and Hopkins 1986) ‘refers to instances of overt rejection or discrimination experienced by stigmatized individuals’ (Gray 2002, p. 737). In the case of parents, an experience can occur with or without their child with disability being present (Gray 2002). The former would be the experienced stigma that occurs in interactional contexts and later as a product of a biographical relationship with a child (Birenbaum 1970, Gray 2002). Parents themselves may be subject to blame for the child’s behavior and medical condition, or they may endure staring, belittling, rejections, avoidance, negative and rude comments, limited opportunities for professional development and promotion, etc. in public and workplaces, healthcare and educational institutions, or among friends and extended family (e.g. Broady et al. 2017, Buljevac and Leutar 2017, Gray 1993, 2002, Farrugia 2009, Francis 2012).

Experienced stigma that family is exposed to is studied using caregiver interview even when the caregivers are not the target of experienced stigma. For example, experienced stigma of a child with disability is mostly studied through parental accounts, although the parents themselves did not experience discrimination directly. For instance, parents may report situations in which their child experienced stigma, such as at school (e.g. teachers did not include child in an annual school play, friends do not invite their child to the birthday parties, etc.), during play (e.g. children at a local park do not play with their child), in the community (e.g. their child was not allowed to join dance classes), etc. (e.g. Broady et al. 2017, Lalvani, 2015, Veroni, 2019). The proxy reporting does not necessarily mean that parents will precisely inform of the stigmatized family member’s experience, but these reports are important to better understand experienced stigma overall. In the cases where researchers explore experienced stigma of the individual using proxy reporting, they should clearly state such a fact and differentiate it from the direct report of the individual’s (e.g. parental experienced stigma) experienced stigma.

Mostly, research explores experienced stigma via interviews as this gives the opportunity for in-depth understanding, although some researchers have developed quantitative scales to measure it (e.g. Čolić and Milačić Vidojević 2020).

Perceived stigma

Perceived stigma could be defined as beliefs that parents hold regarding the negative attitudes of the public towards themselves, their child, and family members (Čolić and Milačić Vidojević 2021). For the sake of parsimony, I will use the term others throughout this section to indicate public’s, friends’, relatives’, etc. attitudes when referring to parents’ perceived stigma. Parents can also perceive that they are seen as bad parents by community members (Francis 2012) or believe that others blame them for having a child with disability (Olawale et al. 2013, Sahu et al. 2016). Additionally, parents may perceive that others have a negative image of their child (e.g. a child with autism is a danger to others; Kinnear et al. 2016). Accordingly, parents could assume that others want to avoid them because they might not feel comfortable in the presence of their child or that others may engage in discriminatory behaviors towards them (Mickelson 2001).

Although parental perceived stigma most likely develops due to previous instances of experienced stigma (Čolić et al. 2021), conceptually, perceived stigma does not necessarily imply that parents were exposed to specific negative and unpleasant situations (Gray 1993). For instance, an individual can learn about attitudes towards certain groups through socialization (see Link et al. 1989) in which case parents might suspect others’ attitudes towards themselves and their child based on the stories and opinions gathered from the social context in which they grew up. As Green (2003) noted in her study, some mothers of individuals with disabilities were probably aware of public attitudes towards children with disabilities because they learned about them before giving birth. Lastly, it is possible that in some parents, perceived stigma develops through the interaction with other families of individuals with disabilities. For instance, parents might avoid certain places or people because (a) they found out about stigma other families of individuals with disabilities were exposed to and/or (b) other families told them to expect discriminatory treatment in certain places.

It is a good practice for researchers to use already validated scales for exploring parental perceived stigma (for validated scales see Kinnear et al. 2016, Čolić and Milačić Vidojević 2021, Zuckerman et al. 2018). In the case that a new scale is needed (for example, to capture areas that might focus on perception of the attitudes of a specific group, such as teachers or assessing stigma from a different theoretical model) scholars should focus on examining parental perceptions of stigmatizing attitudes of others towards their child, themselves, and family.

In summary, a term perceived stigma is most suitable if the research aim is to explore parental beliefs of public attitudes towards themselves, their child, or a family, or their perception of stigma among community members.

Affiliate stigma

Affiliate stigma, also termed as self-stigma (e.g. Chan and Lam 2018), internalized stigma (e.g. Moses 2014, Werner and Shulman 2015), or internal stigma (e.g. Alshaigi et al. 2020), is arguably the most complex stigma concept. It is good to note that in the studies of parents of individuals with disabilities, the term affiliate stigma has been most commonly used compared to other terms such as self-stigma and internal stigma.

Historically, self-stigma was first introduced in the field of mental illness and refers to the internalization of negative public attitudes through the process of awareness, agreement, and application (Corrigan and Watson 2002). That is, a person is aware of stereotypes regarding a group that s/he identifies, then agrees with them, and finally internalizes the stereotypes through some form of self-discrimination, such as self-isolation (Corrigan and Rao 2012). Later, Mak and Cheung (2008) introduced the concept of affiliate stigma to separate the internalization occurring in individuals who are stigmatized due to their own characteristics (i.e. self-stigma) and individuals who are stigmatized due to their close relationship with a stigmatized person (i.e. affiliates). Affiliates are mostly family members, friends, and close relatives, but they can also be medical workers, teachers, and other members of the community. That is, affiliate stigma refers to internalization of the public's negative attitudes toward people who have close connections with a primarily stigmatized person. For instance, if the public pities the mother of a child with autism for the child’s behavior, the mother may begin to feel inferior; the parents apply negative public’s attitudes to themselves. As Chan and Lam (2018) showed, recurrence of self-stigmatizing thoughts becomes an automatic cognitive process that ultimately leads to stigma internalization.

Affiliate stigma has three components: cognitions, affects, and behavioral responses (Mak and Cheung 2008). For example, the cognitive component encompasses cognitive processes, such as thinking less of yourself or believing yourself to have damaged reputation because of the child with disability. Behavioral responses are mostly visible through withdrawal and concealment, while affects depict negative emotions, such as sadness, shame, inferiority, worry, etc. Mitter et al. (2019) in their circle of stigma model also suggested that stigma experience leads to ‘negative self-evaluations and social comparison,’ which can prompt negative emotions and affiliate stigma development (p. 18). In this sense, affiliate stigma ultimately leads to fear and shame of discrimination and social withdrawal.

In addition, the current literature lacks differentiation of when a parent internalizes stigma due to his/her own characteristics, such as mental illness or disability (i.e. self-stigma) and when s/he internalizes stigma owing to their child with disabilities (i.e. affiliate stigma). In other words, parents can bear two types of self-stigmatization, namely self-stigma and affiliate stigma, a phenomenon that has been referred to as double stigma (Sheehan et al. 2017). Future research should explore whether and how these constructs are interrelated and the combined consequences upon well-being.

Although some aspects of affiliate stigma have been explored using qualitative approach (see Ali et al. 2012 for review), the majority of the findings obtained via Affiliate Stigma Scale developed by Mak and Cheung (2008) are quantitative (see Ali et al. 2012, Liao et al. 2019, Mazumder and Thompson-Hodgetts 2019, Mitter et al. 2019 for reviews). Recently, Mitter et al. (2018) developed the Family Stigma Instrument that measures affiliate stigma, among other stigma concepts.

Felt stigma

Felt stigma (also referred to as anticipated stigma in the mental illness stigma literature; Fox et al. 2018) would be considered as an anticipation of discrimination from others and it is characterized by emotions such as fear and shame. Scambler and Hopkins (1986) first introduced the term felt stigma, stating that its main characteristic is the fear of experiencing stigma from others, but also encompasses feelings of shame and embarrassment (Farrugia 2009, Gray 2002, Scambler and Hopkins 1986). For example, parents might be ashamed to go into the community as they anticipate that others will discriminate against them. Gray (2002) examined felt stigma in the parents of children with autism and noted that felt stigma ‘refers to an individual’s fear of failing to enact a normal appearing round of life’ (p. 737). An example of felt stigma would be when the parents are afraid to bring their child with disability to the park owing to expectation that others will discriminate against them and/or their child.

Experienced stigma and similar stigma concepts

In some cases, researchers encounter challenges in distinguishing between felt and experienced stigma in their analyses (Salleh et al. 2020). Although felt and experienced stigma are often faced simultaneously (Gray 2002), conceptually they are distinct. Felt stigma is an anticipation of discrimination from others, accompanied with negative emotions such as fear and shame, while experienced stigma refers to lived experience of discrimination that occurred in the past. Felt stigma does not imply that a person experienced stigma in a real life, but rather that the person fears being discriminated and feels ashamed. Similarly, one can confuse experienced stigma with perceived stigma, which is an assumption about what others might be thinking, which is different from what a person experienced.

Experienced stigma and public stigma should be distinguished as well, as some researchers presented instances of parental experienced stigma under the term public stigma (Corrigan and Miller 2004, Tekola et al. 2020). Public stigma refers to negative attitudes of the public towards the stigmatized group from the point of view of the stigmatizer and includes three components: stereotype, prejudice, and discrimination (Corrigan and Watson 2002, Pryor and Reeder 2011). While experienced stigma does reflect the public’s attitudes, it would be misleading to equate these two concepts, as public stigma examines attitudes of the public about parents and individuals with disabilities, whereas experienced stigma comes directly from families’ reports of negative experiences they had in the past. Therefore, both methodological approaches and informational sources of reports differ between the two terms.

Perceived stigma and similar stigma concepts

Felt stigma and perceived stigma are intersected and both of these terms include a parent’s assumption about others’ attitudes. Felt stigma encompasses the parents’ anticipation of the public's negative attitudes mixed with emotions, such as shame and fear. That is, an individual might be afraid of how others will react if they find out about his/her stigmatized identity (Quinn and Chaudoir 2009). Perceived stigma refers to parental beliefs regarding public negative attitudes towards them and/or their child. For instance, in the case of felt stigma, parents would fear going into the community with their child if they anticipate discriminatory treatment. In the case of perceived stigma, parents believe that the public would discriminate them, but they do not have to fear going into the community.

Although perceived stigma and affiliate stigma are conceptually and analytically different, they both could limit social interactions that make their distinction harder. In the case of perceived stigma, parents might avoid some social situations, not because they feel ashamed or embarrassed of their child, but rather to limit stressful experiences and discrimination. Simply put, because parents perceive stigma at some community places, they would rather stay at home or visit only welcoming places to avoid acts of experienced stigma (Moses 2014). In the case of perceived stigma, these expectations of negative treatment by others do not necessarily affect self-esteem of the parents. As regards to affiliate stigma, social concealment, withdrawal, and, in some cases, alienation from the child to avoid association occur mostly due to the feelings of shame and embarrassment and the beliefs of low self-worth by the parents (Mak and Cheung 2008). Affiliate stigma therefore affects the way parents see themselves and contributes to lower self-esteem (Charbonnier et al. 2019).

Affiliate stigma and similar stigma concepts

The question arises whether felt stigma is conceptually the same as affiliate stigma or if it is a separate construct. Some researchers refer to felt stigma and affiliate stigma as the equal concept (Alshaigi et al. 2020, Chan and Leung 2021). Many studies showed that felt stigma among parents encompasses fear of experiencing discrimination as well as the feelings of embarrassment and shame that are most likely produced by the anticipation of discrimination (Alareeki et al. 2019, Broady et al. 2017, Gray 2002, Selman et al. 2018, Tilahun et al. 2016, Thibodeau and Finley 2017). The behavioral aspect of the affiliate stigma is mostly characterized by withdrawal and concealment, while negative emotions such as shame, inferiority and worry are properties of the affective components of the affiliate stigma. Based on its properties, felt stigma has the same conceptualization as affective and behavioral components of affiliate stigma, and thus, it does not seem to represent a separate phenomenon as it is currently defined in the literature. More research is needed to determine whether felt stigma in parents of individuals with disabilities is a different concept from affiliate stigma.

A methodology for stigma conceptualization

Researchers are encouraged to clearly formulate a stigma concept in their studies to avoid ambiguity of findings and ensure generalization and comparison of results (Link and Phelan 2001). As mentioned earlier, using the same term while examining two conceptually distinct phenomena is a serious threat to research integrity and validity. Thus, the researchers should review literature regarding stigmas that surround families of individuals with disabilities.

Before identifying the aim of the study is (e.g. what parents had been experiencing in the community). Furthermore, researchers should determine what type of stigma they are exploring and whether there is an existing scale that examines the type of stigma they are interested in. If there is no available scale, researchers should develop a questionnaire that captures that type of stigma (see Gillham 2008 for steps on how to develop a questionnaire). Furthermore, in the research article, stigma should be clearly specified and described. Lastly, when referring to the previous studies, researchers should confirm that the definition of specific stigma in previous studies corresponds to the aim of their study in order to avoid ambiguity.

Conclusion

Stigma is undoubtedly a complex phenomenon and different stigmas are very often interrelated, which poses an additional challenge in distinguishing between them. We, the scholars, have made progress in identifying various types of stigma since Goffman (1963) suggested that family members of primary stigmatized individuals also bear stigma. At the same time, it would not be surprising to see further diversification of the stigma concept in the future as the interest grows in different fields and with different populations.

The need for a precise differentiation between different types of stigma is requisite if we, as researchers, wish to follow the rigor of scientific approach and present conceptually valid conclusions. As stigma is culturally shaped (Yang et al. 2007), stigma in various cultures might be defined slightly differently. Furthermore, stigma can have different attributes depending on the characteristics of the stigmatized (e.g. parents of children with autism versus parents of children with cerebral palsy). Thus, we as researchers need to make an effort to understand each stigma concept and define it clearly in our studies and to conceptualize newly introduced stigma concepts in order to maintain scientific integrity. Having a conceptually valid agreement among scholars will contribute to a better understanding of the phenomena and the comparison of results across studies. Ultimately, this will lead to more accurate conclusions about stigma which can be used to inform various support programs for the families of individuals with disabilities.

Author contribution

Marija Čolić conceptualized and wrote a manuscript.

Declarations data availability statement

No data were used in the study.

Ethics approval statement

No subjects were involved in this study.

Disclosure statement

Author does not have any conflict of interest to disclose.

Funding

No funding was received for this study.