Stigma, occupational injustice, and individualization of systemic issues: current issues faced by community dwelling adults with serious mental illnesses

Abstract

Serious Mental Illness (SMI) is a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities. As of 2019, it is estimated that 13.1 million adults aged 18 or older are living with an SMI in the United States. Community-dwelling adults with SMI have identified many benefits that help with carrying out needed activities in the community but also face many barriers such as (internalized) stigma, occupational injustice, and individualization of systemic issues. It is imperative for practitioners to understand how these barriers impact participation and create better ways to understand and center the voices of this population in assessment and intervention and work to address barriers at both an individual and systems level.

Keywords:

• Serious mental illness
• self-determination
• stigma
• occupational justice
• community-based mental health
• lived experience

Serious Mental Illness (SMI) is a mental, behavioral, or emotional disorder resulting in significant functional impairment, which substantially interferes with or limits one or more major life activities (NIMH 2019). As of 2019, it is estimated that 13.1 million adults aged 18 or older are living with a SMI in the United States (NIMH 2019). Adults with SMI can experience sleep disorders, cognitive distortions, auditory distortions, decreased attention to self-care, difficulty with completing instrumental activities of daily living (IADLs), and impaired executive functioning, among others (American Occupational Therapy Association 2012). These disturbances can have negative consequences including decreased functioning and quality of life.

Community-dwelling adults with SMI have identified many facilitators and barriers with carrying out needed activities, referred to as occupations – ‘the everyday activities that people do as individuals, in families, and with communities to occupy time and bring meaning and purpose to life. Occupations include things people need to, want to and are expected to do’ (World Federation of Occupational Therapists 2010, 1, para. 1). Community participation is an occupation that provides access to social supports that help boost resiliency and coping skills, the ability to set goals, adopt religious beliefs, and attain vocation status (Zargham-Boroujeni, Maghsoudi, and Oreyzi 2015). Healthcare and community-based practitioners have an ethical responsibility to facilitate and support individuals with SMI in meeting their occupational and community participation needs.

Occupational needs include the following: (1) the ability to choose daily occupations, or activities, (2) the ability to participate in occupations, (3) the ability to maintain balance of the various activities they choose to participate in and (4) the ability to engage in personally meaningful occupations (Brown and Hollis 2013). The occupational needs of adults with SMI are those that allow for successful community-dwelling, including vocational skills, leisure skills, social participation, and education (Gibson et al. 2011).

Living in the community for adults diagnosed with SMI has many benefits, however, they face systemic barriers to community participation such as increased experiences of stigmatization, individualization of systemic issues (addressing issues from an individual perspective, instead of recognizing that it is systemic), and limitations on self-determination. Another systematic barrier reported is increased occurrences of occupational injustice, or being denied the right to have their basic needs met and have unequal opportunities to reach their potential, specific to their idiosyncratic engagement in diverse and meaningful occupations (Townsend and Wilcock 2004). To better meet the needs of this community dwelling adults with SMI, it is important for interventionalists to understand how these barriers impact participation and create effective ways to understand and center their lived experiences during assessment and intervention.

Current issues

(Internalized) stigma

Stigma is defined as ‘the experience of being judged ahead of time or seen as less valuable than other people, and perhaps being discriminated against, based on a characteristic of a person’ (Bromley et al. 2013). Stigma against people with SMI can play a large role in preventing desired community participation. Most adults with SMI desire to work or participate in an educational program and perceive these opportunities as valuable in the recovery process (Noyes, Sokolow, and Arbesman 2018); however, there are limited opportunities to engage in work due to stigma associated with mental illness, complex and competitive job markets, non-supportive working environments, and fear of losing disability benefits (Noyes, Sokolow, and Arbesman 2018). These barriers limit the person’s ability to be independent, as they cannot do what they want. Additionally, people living with SMI also face the challenge of internalized stigma, which leads to the rejection or denial of their diagnosis (AOTA 2013). Negative internalized perceptions can result in fear, apathy, low self-esteem, and feelings of meaninglessness (Millner et al. 2019).

Occupational injustice

According to Hocking (2017), occupational justice is only served when conditions allow people to engage in occupations in ways that are consistent with their culture and beliefs. In the previous section, it is made clear that due to (internalized) stigma, some community-dwelling adults with SMI can be denied opportunities or face low expectations; when that happens, they experience occupational injustices.

Further compounding these injustices is the fact that people with low socioeconomic status are overrepresented in the community-dwelling SMI population as well as LGBTQIA + people, Indigenous Americans/Alaska Native populations, racial minorities, religious minorities, and asylum seekers and refugees (American Psychiatric Association 2020). Additionally, people with SMI are more socially isolated and have greater difficulty participating in community activities than those without mental illness (Lincoln and Adams 2016). To better serve and understand the community-dwelling adult SMI population, it is imperative to look beyond the literature and theory and know the socio-political impact on participation and its influence on occupational inequities and injustices to enact social transformation (Laliberte Rudman 2013). This in turn will allow people with SMI to engage in occupations in ways that are consistent with their culture and beliefs.

Individualization of systemic issues

Often, the barriers to community participation that are faced by community-dwelling adults with SMI are systemic problems, that healthcare practitioners typically provide individualized intervention for, instead of looking at it from a larger societal context (Laliberte Rudman 2013). For example, Barlott et al. (2020) explore the ways in which people with SMI are still subjected to forms of social control via coercion or conciliation in the name of ‘social inclusion’. For a person with SMI to be considered ‘healthy’, they must be independent, financially secure, and integrated with people who do not have SMIs; in other words, people with SMI must meet the social contract of ‘typical’ society to truly be integrated. The authors argue that this singular view of inclusion is limiting and imposes a social order in which people with SMI are at the bottom. When the macro-level context is explored, it is better understood that many of the barriers to community participation for adults with SMI are related to political and social systemic inequalities and injustices. Barlott et al. (2020) assert that deterritorialization is a way to disrupt institutional control over community-dwelling adults with SMI, and that including the voices of this population group is one way to shift the power balance. Instead of operating under the assumptions of the researchers and practitioners (who tend to be Western, Anglo, and middle class) (Blank, Harries, and Reynolds 2015; Laliberte Rudman 2013), it gives a voice for people with SMI to define what inclusion means to them.

Future directions

To address the barriers to community participation for adults with SMI it is imperative to center their lived experiences during assessment and intervention. Lived experience refers to people who have had first-hand experience with serious mental illness diagnoses or substance use challenges. The emphasis is on the word ‘lived’ to differentiate from others such as healthcare practitioners who have worked with people who have SMIs or substance use disorders but have not personally lived through those challenges (Hart, 2016). A way to capture these lived experiences is the creation or use of a phenomenological assessment and intervention tool which utilizes the Occupational Justice framework. According to Mattingly (1994), a phenomenological assessment is ‘used to provide an understanding of a person in terms of their daily practices, life history, social relationships, and long-term goals and plans that give them meaning in their life and their self-identity’. This is especially important because the disability perspective is essential for understanding and promoting justice (Mladenov 2016).

Pavlo et al. (2019) conducted a mixed-methods participatory study in which they sought to understand the relational quality between a person with SMI and their physician. The authors found that people feel more understood when physicians saw them in context and suggested that ‘tools could be developed to help create a safe enough relationship to elicit patients’ preferences and goals’. However, building a collaborative relationship with a person with SMI may be difficult due to the complicated paths to care the person may have experienced, such as suboptimal care, coercion, or treatment environments that focus on illness management vs. achieving personal goals. The authors suggest that a way to improve collaborative relationships is to integrate patient narratives into decision-making. We propose that lived experiences should be considered just as important as clinical expertise and should help guide the creation of treatment plans. Especially because people with SMI may engage in occupations that may be viewed as ‘unproductive’, or disruptive to have their needs met (Twinley 2013). The interventionalist must understand that ‘non-traditional’ performance patterns may serve as a way to participate in society despite societal barriers to inclusion and participation.

Second, practitioners who interact with this population must make a shift towards shared decision-making and self-determination. Currently, much of the literature investigating and addressing barriers and supports to community integration of adults with SMI have focused on physical and social aspects of participation (Millner et al. 2019). Millner et al. (2019) report that both active community participation and a psychological sense of community have been associated with social empowerment and self-determination, resulting in an increased need for mental health practitioners to encourage active participation with a strong focus on self-determination. Self Determination Theory (SDT) considers the effect of social-contextual factors on human motivation, behavior, and personality. According to SDT, goal pursuit and attainment concerns the degree to which people are able to satisfy their basic psychological needs: competence, relatedness, and autonomy. Within SDT, these three psychological needs are considered essential for understanding the what (i.e. content) and why (i.e. process) of goal pursuits (Ryan and Deci 2000). A way that practitioners can engage in SDT is by utilizing shared decision-making. Shared decision-making allows for the adults with SMI to be more autonomous. Shared decision-making also helps to challenge practitioners who are prone to paternalism when working with people with SMI and who view this population as more symptomatic than they are (Treichler and Spaulding 2017). For persons who have cognitive impairments that impact decision-making skills, supported decision-making should be considered. Supported decision-making occurs when a person with cognitive impairments is provided support from people such as friends, family members, or health providers, who assist them with making choices and who agree to help the person understand, consider, and communicate decisions (ACLU 2022; Gooding 2013; Kohn, Blumenthal, and Campbell 2013). Supported decision-making can look like using plain language materials, creating lists of pros and cons, having extra time to discuss choices, etc. (ACLU 2022).

Last, to understand the needs of adults with SMI living in the community, the interventionalist must understand the critical and dynamic relationship between the person variables and context variables to enable participation. It is vital that the practitioner is educated on and an advocate for policy and social change that supports this population’s needs and can appropriately apply the occupational justice framework to intervention due to the complexities related to cultural context (i.e. access to Social Security benefits and Medicaid/Medicare, social context (i.e. access to community mental health agency and case manager), and the physical environment (i.e. homeless shelters, subsidized housing, homeless encampments) that community-dwelling adults with SMI may face. When systemic barriers to participation are addressed, it allows for a more supportive and accessible environment, which enhances the likelihood of improved performance, participation, and integration.

If any these contexts are left unexplored, it may lead to the individualization of systemic issues. For example, a community-dwelling adult with SMI who is unhoused may want to learn how to prepare a hot meal but does not have access to a kitchen or does not have enough money to purchase groceries. Thus, it is important that the practitioner understands the critical and dynamic relationship between the person variables and context variables to enable community participation. When context is understood, practitioners can then advocate for policy change, work with community collaborators to implement realistic and sustainable community and population-level interventions (Bailliard et al. 2020), and better understand and work to dismantle various systems (e.g. racism, ableism, classism, white supremacy, etc.) that serve as barriers to community participation.

Conclusion

Community-dwelling adults with SMI have identified many factors that help with carrying out needed activities in the community but also face many barriers such as (internalized) stigma, occupational injustice, and individualization of systemic issues. It is imperative for practitioners to understand how these barriers impact participation and create better ways to understand and center the voices of this population in assessment and intervention. Additionally, practitioners should engage in shared decision-making, utilize self-determination theory, and work to understand the context that their clients are living and work to address barriers at both and individual and systems level.

Disclosure statement

No potential conflict of interest was reported by the authors.