Stigma in people living with bipolar disorder and their families: a systematic review

Background

Psychiatric disorders are one of the five leading causes of disability. Bipolar disorder is one of the most persistent, important, and severe psychiatric disorders. Approximately 1% of the population suffers from bipolar disorders and is equally common in both genders (Angst 2013; Jolfaei et al. 2019; Mohammadi et al. 2019). Bipolar disorder is described in the DSM-5 as a group of brain disorders that cause extreme fluctuation in mood, energy, and function, ranging from depressive to schizophrenia. People with bipolar disorder experience periods of excitement, overactivity, delirium, and euphoria (known as mania), and other periods of feeling sadness and hopelessness (known as depression) (Kaltenboeck et al. 2016; Khaleghi et al. 2018).

People with bipolar disorder have been neglected in the society. Several factors contribute to poor support for people with bipolar disorders, including costly care in medical centers, poor cooperation between supportive organizations and insurance companies, and de-institutionalization movement policies. As a result, most families are responsible for caring for people with bipolar disorders (BİLİR, 2018; Ghai et al. 2013). The experience of caring for such people can be different from other mental illnesses. The reason for this difference goes back to the nature of the disease, which has a periodic state and has an oscillating nature (Bruni et al. 2018). Stigma is one of the most common and challenging social issues that affect people living with bipolar disorder (Grover et al. 2019; Sharma et al., 2017).

Stigma can be considered a combination of three problems: lack of knowledge (ignorance and misinformation), negative attitudes (prejudice), and rejection or avoidance behaviors (discrimination) (Goffman 2003; Henderson et al. 2013). The history of stigma and rejection from society backs to ancient times (Gur et al. 2012). The presence of stigma is the most serious concern for patients; because they must cope with the disease and symptoms and adapt to negative attitudes and society labeling (Knight et al. 2006; Sibitz et al. 2011; Wong et al. 2009). Stigma impairs people’s quality of life and leads to their isolation and rejection of interpersonal relationships. The rejection from society and low self-esteem, following the fear of rejection, weakens living conditions, reduces income, and causes unemployment for people with bipolar disorders (Connell et al. 2014; Latifian et al. 2022a, b, c).

Stigma is also common among families of people living with bipolar disorder. The parents of such patients, reprimanding by ordinary and professional people, look for the causes of the disease and experience issues such as guilt attribution and social exclusion due to having a family member with such disorder (Koschorke et al. 2014; Latifian et al. 2022a, b, c; McCann et al. 2011). Family stigma contributes to decreased self-esteem, sleep disorders, decreased psychological well-being, and reduced quality of life (Wong et al. 2009). Another consequence of stigma is the inability of families to seek treatment. About 50–60% of people living with neurological disorders refuse treatment or care due to fear of stigma for themselves and their family members (Park & Park 2014). In the study by Ando et al., one of the reasons for the delay in counseling was concerned about people’s thoughts (Ando et al. 2013). In addition, stigma increases the risk of suicide in people living with bipolar disorders and their families and is cited as one of its causes (Aggarwal et al. 2014).

Although stigma is a global phenomenon, the experience of dealing with it and the discrimination varies across countries and even cities. In general, the reaction of people in the community to patients with psychiatric disorders can vary depending on the severity of illness, culture, and changes over time (Keshavarz et al. 2018; Shamsaiee et al., 2013).

The increasing experience of stigma in people living with bipolar disorders and their families, as well as the significant role of psychological and social interventions in reducing the stigma of this disease, make it more necessary to pay attention to the various dimensions of this phenomenon (Latifian et al. 2022a, b, c). So far, a number of review articles have been done in the field of stigma in bipolar disorder. For example, in the study by Perich et al., stigma in bipolar disorder is compared with schizophrenia, personality disorders and anxiety disorders. Also, general stigma has been compared with greater functional impairment and lower levels of functional impairment (Perich et al. 2022). In the study by Pal et al., only the researches that have been conducted in India in a quantitative and qualitative manner have been examined (Pal et al. 2021). Ellison et al. also conducted a review study. This review aimed to identify publications which investigated public attitudes and/or beliefs about bipolar disorder or explored internalised stigma in bipolar disorder between 1992 and 2012 (Ellison et al. 2013). In 2013, a review article was prepared by Hawke et al. The purpose of this article was to identify guidelines and specialized interventions for the development of stigma reduction initiatives in bipolar patients by April 2012 (Hawke et al. 2013).

Review of studies showed that each of the studies conducted in this field investigated one of the dimensions of stigma in one of the two groups of people living with bipolar disorders and their families. Even in some cases, differences and disagreements were seen in the results of these studies. Information on the different dimensions of stigma and blame and analyzing the similarities and differences of the results of previous studies in both groups, with a comprehensive review of this issue, can lead to a better and more comprehensive understanding of this issue. However, there are no systematic reviews addressing these issues. Therefore, the present study aimed at examining the experience of stigma and evaluating the predictors, consequences, and strategies to combat stigma in people living with bipolar disorder and their families by December 2022.

Methods

We conducted a systematic review to analyze research findings on stigma in people living with bipolar disorders and their families. This study was performed according to the directions denoted by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) in 2022.

Results

In the first stage, after searching in different databases 42,763 records identified. In the second stage, 19,743 records, due to being duplicate or non-English language were removed. In the third stage, the records were screened and the titles of the articles were reviewed. After assessing the articles in terms of design and quality criteria by four experts in the fields of social work, psychology, and rehabilitation, the articles that had titles unrelated to the topic or did not have full text were removed and 839 articles that met the least scientific requirements for being included in a systematic review were chosen. In the fourth stage, after reviewing the abstracts of articles, several articles unqualified for being included in the study were omitted, leaving 251 articles. Some of the reasons for removing these articles at this stage were: lack of valid tools, insufficient sample size and being a review study. Then, in the last stage, the full text of 251 articles was reviewed and methodology was analyzed to provide an accurate definition and explanation of the target group, study design, sampling method, sample size, and the validity and reliability of data collection tools. Finally, 40 articles remained for final evaluation. Figure 1 shows the process of the inclusion and exclusion of primary studies until reaching the final synthesis.

After searching and qualitative evaluation of the studies during a systematic review, in the end, the final synthesis was performed on 40 articles. As it turns out in Table 1, quantitative research has accounted for a larger share of studies.

According to Table 2, the distribution of studies in different countries is also easily understood. About 14 countries have directly studied this phenomenon, and some countries have conducted joint studies.

The results of the studies were categorized into four themes: 1. Stigma experienced by people living with bipolar disorders and their families, 2. Predictors of stigma in people living with bipolar disorders and their families, 3. Consequences of stigma in people living with bipolar disorders and their families, 4. Effective interventions and strategies to reduce stigma in people living with bipolar disorders and their families.

Discussion

This study aimed to examining the experience of stigma and evaluating predictors, consequences and strategies to combat stigma in people with bipolar disorder and their families. Our findings suggest that people living with bipolar disorders and their families experience different levels of stigma, whose consequences, in general, include feelings of disrespect, disregard, and discrimination in society. To cope with this phenomenon, families often choose social isolation and withdrawal. They deprive themselves and the patient of receiving treatment by hiding the ill family member and delaying seeking treatment. Social stigma is the most devastating when the bipolar patients and their families accept it and internalized the negative views of the community, a phenomenon called internalized or emotional stigma. This is consistent with the findings of Bruni, Sharma, Wong, Bassirnia, Park, Grover, Ando and Leporil (Bruni et al. 2018; Sharma et al., 2017; Wong et al. 2009; Bassirnia et al. 2015; Park et al., 2014; Latifian et al. 2022a, b, c; Grover et al. 2019; Ando et al. 2013; Richard-Lepouriel et al. 2021).

The results of Ring and Thibodeau’s studies also showed that, people with mental health problems and their families experience stigma in various degrees. The experience of stigma in these people has led to inner turmoil in response to the stigma of others and weakening of family status among relatives and acquaintances. In addition, examining the experience of stigma in patients with schizophrenia and their families also showed that these people have problems in interpersonal interaction, structural discrimination, public images of mental illness and access to social roles, which all confirm the findings of this study (Ring et al., 2019; Thibodeau et al., 2017).

The analysis of available studies revealed that many factors could effectively predict stigma in people living with bipolar disorders and their families, including social and cultural structures, inefficient welfare system, low education, unemployment or lack of a suitable job, low self-esteem, poor communication skills, lack of intimate relationships with others, lack of being understood by others, poor social support, collectivist cultures, young age at disease onset, recurrent hospitalizations, gender, disease severity, disease duration, discriminative labels, lack of information/knowledge, generalization, banalization and reaction induced by public stigma in the general population, or among professionals such as health care professionals and employers. This finding was consistent with the results of Bonnington, Clemente, Favre, Sadeghi, Engidaw, Shumet, Thome, Cerit, Sarisoy, Howland, Ellison, Nilsson and Pal (Bonnington & Rose 2014; Clemente et al. 2017; Favre et al. 2022; Sadeghi et al. 2003; Engidaw et al. 2020; Shumet et al. 2021; Thomé et al. 2012; Cerit et al. 2012; Sarısoy et al. 2013; Howland et al. 2016; Ellison et al. 2015; Nilsson et al. 2016; Pal 2020).

In addition, the results of Bruni and Khaleghi’s studies also showed that in patients with psychiatric disorders, some personality traits may be accompanied by better empathic and communication skills, and may have a protective role against stigma. In these studies, violence, lack of knowledge and negative attitudes were introduced as predictors of stigma in psychiatric disorders (Bruni et al. 2018; Khaleghi et al. 2018). Moreover, the results of Świtaj’s study showed that in schizophrenia, saying offensive things about the mentally ill (69%), viewing unfavorably by others (63%) and treating them as less competent people (59%) identified as predictors of experience stigma in these patients and their families (Świtaj et al. 2009).

Studies have pointed out several consequences of stigma in these individuals, such as reduced participation, social deprivation, threats to mental health and reduced social adjustment emotional and sentimental excitement, objective and behavioral reflections, family solidarity threat, social exclusion, social isolation, restriction in social functions such as job performance and education, low self-esteem, poor quality of life, the prolongation of the treatment course, disease recurrence, hiding the disease, experiencing discrimination and injustice, and finally reduced life expectancy and resilience. These results were in line with previous studies of Bhattacharyya, Pal, Noak, Latifian, Perlick, Kumar, Sadighi, Au, Vazquez, Karidi, Post, Quenneville, Grover, Brohan and Mileva (Bhattacharyya et al. 2019; Pal 2020; Noack et al. 2016; Latifian et al. 2022a, b, c; Perlick et al. 2001, 2007; Kumar et al. 2020; Sadighi et al. 2015; Au et al. 2019; Vázquez et al. 2011; Karidi et al. 2015; Post et al. 2018; Quenneville et al. 2020; Grover et al. 2016; Brohan et al. 2011; Mileva et al. 2013).

The findings of Violeau and Klein's studies are also consistent with the results of this research. Because these studies have shown that the fear of being stigmatized or socially sanctioned and disgraced governs many aspects of human behavior. In many cases, the fear of stigma does not result in actual behavior change but rather leads individuals to simply hide certain behaviors or actions (for example, smoking in secrecy). When labeled as “schizophrenic,” patients feel a change in the way they are treated. This label affects the way patients interact with healthcare services as well as the world, since the illness becomes the central aspect of the patient’s identity. The impact of stigma on patient self-esteem should also be mentioned, since it is associated with a higher risk of depression and suicide (Violeau et al. 2020; Klein et al. 2021).

Several interventions have been suggested to alleviate stigma and its consequences in people living with bipolar disorders and their family members. The positive outcomes of these interventions included boosting public awareness and amending public attitudes toward bipolar disorder. Some of them included awareness, using alternative non-pharmaceutical therapies, enhancing self-esteem, using the ISE tool to identify patients’ experiences, psychological education and cognitive-behavioral interventions aiming to increase patients’ perceived recovery and sense of disease control. These results were in parallel with those of Michalak, Keshavarzpirpir, Richardson, Mileva, Post, Latifian, Nillson and Hawke (Michalak et al. 2011, Keshavarzpir et al. 2020; Richardson & White 2019; Mileva et al. 2013; Post et al. 2018; Latifian et al. 2022a, b, c; Nillson et al., 2016; Hawke et al. 2014).

Other evidence also suggests that health provider training can improve stigmatizing attitudes and that interventions combining positive messages of recovery potential with biological etiology will be most impactful to reduce stigma. Anti-stigma interventions designed specifically for health providers, family members, criminal justice personnel, and law enforcement seem particularly beneficial, given these sources of stigma (Wood et al. 2016). In addition, an understanding of the experience of family stigma can lead to the development of supportive strategies to manage this problem among caregivers of patients with psychiatry disorders. Mental health professionals can support caregivers by offering them opportunities to discuss how stigma is disrupting their caregiving roles. They can also support the caregivers in negotiating the experienced social and emotional distress and when necessary, refer them to the other members of healthcare teams (Ring et al., 2019).

Limitations

The limitations of this study are the possibility of not including in-press articles, exclusion of non-English articles, the lack of possibility for searching in a number of other databases, and the possibility of the non-retrieval of all related studies using the combinations of the utilized keywords. So, to acquire all related articles, in addition to searching using a combination of syntax, authors also searched a considerable number of retrieved articles manually. Also, due to insufficient time and the compulsion to do a systematic review as a prerequisite for preparing a doctoral thesis, the protocol of this study was not registered.

Conclusion

The results showed that stigma hurdles the treatment of people with bipolar disorder due to labeling, followed by hiding the disorder by families and delay in seeking treatment. Misconceptions such as considering these people dangerous and unpredictable and regarding families as culprits and irresponsible are present in society and workplace, educational settings, health care system, judiciary system, and even in the family. Therefore, it is necessary to take necessary measures to normalize bipolar disorder at the community level so that the general public becomes aware of its nature and understands stigma towards people with mental disorders. The findings of this study can provide useful information about stigma in people living with bipolar disorder, which can be used for mental health policymaking at the macro level, as well as by health care providers, the general public, and families at the micro level.

Author contributions

ML and GR Conceived and designed the analysis and conducted the literature search. ML, SHI KA and RA performed the analysis and wrote the paper. ML, GR, SHI KA and RA edited the article. All authors read and approved the final manuscript.

Funding

The authors received no financial support for the research, authorship, or publication of the article.

Availability of data and materials

The data that support the findings of this study are available.

Declarations