Problem Statement 

Understanding families as potential contributors to stigmatized attitudes, behaviours, and beliefs surrounding family members with severe mental illness (SMI) is crucial. There is a prevalent public perception that holds families and relatives responsible for mental illness (Szasz, 1960), leading to unfair blame, humiliation, and accountability for mental health issues affecting their kin (Larson & Corrigan, 2008). Despite this, limited research has considered emotions and experiences that drive re-stigmatization of family members by their own families, manifesting through both conscious and subconscious behaviours. It raises questions: does most research predominantly view families as victims of extreme negativism and stigma? Are the stigmatizing behaviours a result of frustration, anger, impatience, and/or burnout? In essence, there is a pressing need for a more comprehensive understanding of family-context stigma. This can be achieved through a structured approach that identifies and models the underlying elements, ultimately promoting a higher quality of life and well-being for the entire family. This project will utilize data gathered from both families and service users; it seeks to develop a psychometrically valid measure that captures these critical factors. The goal is to contribute valuable insights to future research, fostering a deeper understanding of family-context stigma and paving the way for improved support and well-being for all involved.

Abstract

Severe Mental Illnesses (SMI) encompass a spectrum of profoundly debilitating psychological conditions, including schizophrenia, bipolar disorder, and major depression. This category of SMI also extends to encompass anxiety disorders, such as panic disorder, post-traumatic stress disorder (PTSD), and obsessive-compulsive disorder (OCD), in addition to eating disorders (anorexia, bulimia and binge) and specific personality disorders like borderline personality disorder (BPD). This broad inclusion becomes especially pertinent when these conditions display a chronic course, a heightened likelihood of relapse, and a substantial, enduring impact on an individual's functional capacity across various aspects of life (Gaynes et al., 2015; Peck & Scheffler, 2002; Drake et al., 2001). This marked influence of SMI extends beyond the individual’s suffering to major public health issue that significantly impacts on the lives of those affected, their families and carers. Due to their illness, individuals face discrimination from various sources, including their own families and friends (Thornicroft, 2006; Henderson et al., 2012), public (Thornicroft, 2006), professionals within the Mental Health field (Wahl & Aroesty-Cohen, 2010), institutions (Corrigan et al., 2004), and emergency department clinicians (van Nieuwenhuizen et al., 2012). This discrimination not only hinders their access to education, work opportunities, and social activities but also poses challenges in finding suitable housing (Borenstein, 2020).

Discrimination, a key aspect of stigma's behavioural component (Link and Phelan, 2001), encompasses both ignorance (a knowledge-related issue) and prejudice (an attitude-related problem; Goffman, 1970,2009; Thornicroft, 2006). Those individuals with SMI encountering discrimination in their immediate surroundings tend to develop an increased expectation of future discrimination (Thornicroft et al., 2009). This anticipation leads to a reluctance to pursue employment and relationships, impeding the process of recovery (Link et al., 2001).

This prevailing attitude within the community frequently exerts a significant impact on quality of life and well-being of both service users and their families. Historically, families sometimes get stigmatized as maintaining or contributing to SMI among their family members, unfairly blamed and shamed due to their association with them (Saunders, 2003). Paradoxically, families can also serve as catalysts in perpetuating stigma and accelerating the stigmatization process.

In the UK, between 2020 and 2021, approximately half a million individuals had a diagnosis of SMI, such as schizophrenia or bipolar disorder (OHID, n.d.). The support of family and friends for individuals with SMI, may play a vital role in recovery, social and familial inclusion.

Frequently, these supports are hindered due to popularised stereotypes where person with SMI are deemed dangerous (posing danger to harm themselves and others), incompetent, lazy and culpable (Reupert and Maybery, 2015). These assumptions about family members with SMI can be traced back to a pervasive belief system of ‘ableism’ (OHRC, n.d.) which refers to conscious/unconscious attitudes, embedded in society and institutions that devalue and limit the potential of person with inabilities (Doyle and Finn, 2013). Unfortunately, prejudice and misconceptions about SMI can hinder the supportive role of families. These biases may include viewing SMI as a moral failing or associating individuals as being unpredictable and dangerous (Jorm et. al., 1997; Corrigan, 2004). Families consciously/subconsciously contribute to these stigmatising beliefs and attitudes which worsens the state of wellbeing among both parties (Ahmedani, 2011).

Efforts to reduce these stigmatizing attitudes through public campaigns have not been very successful in long run. This can be attributed to a combination of factors, including inadequate resource allocation, insufficient promotional efforts, and shortcomings in social marketing strategies (Medicine et al., 2016, Chapter 4; Thornicroft et al., 2016; Morgan et al., 2018). Furthermore, the effectiveness of these campaigns has been hindered by a narrow focus on education-based approaches, rooted in the assumption that stigma primarily stems from a lack of accurate information within the public domain (Corrigan, 2018; Foster, 2017; Henderson and Gronholm, 2018). Instead, opt for impactful strategies: prioritize contact-based and protest-based interventions (Walsh and Foster, 2021) to empower service users and families against societal negativity.

To develop a psychological and educational intervention for this purpose, it is crucial to have better understanding of how these attitudes affect everyone and why some families struggle with prejudice while others find meaning and growth. To address this knowledge gap and assess family-context stigma, our proposed study aims to conduct a structured mixed method study with the involvement of people with SMI and their families.  

Methodology

This project follows a mixed methods approach. Currently Phase 1 of the study (qualitative) is in progress.

If interested to know more in detail, please contact me at Ghosh-O@ulster.ac.uk 

References 

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