Living with schizophrenia: Perspectives of Turkish people with schizophrenia from two Patient Associations on how the illness affects their lives

Abstract

Background:

Schizophrenia is a chronic mental illness affecting the social and occupational lives of the sufferers and posing a considerable burden on the patients and their families. Furthermore, negative societal reactions and the internalization of these attitudes exacerbate the difficulties encountered. This study examines the perspectives of Turkish people with schizophrenia on how they view the impact of the illness on their lives, the societal reactions and attitudes to schizophrenia and whether they agree with these reactions.

Methods:

Twenty-three adult participants, all members of two schizophrenia associations in Ankara, capital of Turkey, were recruited. Semistructured interviews were used to find out their perspectives on how the illness affected their lives, how the society reacts to them and their views on these reactions. Interviews were recorded, transcribed and thematic analysis was used to capture the general and the subthemes.

Results:

The findings suggest that causal attributions for the illness, the impact of illness on various life domains, challenges of living with the illness and finally stigmatization are general categories that capture the perspectives of the participants.

Conclusion:

People diagnosed with schizophrenia experience the impacts and burdens of their illness in various domains of their lives and negative societal reactions heighten these burdens. It seems important to consider the challenges faced by people with schizophrenia in living with their illness and the impacts of negative societal behaviors and attitudes in offering psychosocial interventions programs for supporting this group. Furthermore, combating negative societal attitudes also seems to be necessary.

Keywords

Schizophrenia impact of illness challenges faced stigmatization

Schizophrenia is a chronic mental illness affecting more than 21 million people worldwide (World Health Organization, 2016). It is characterized by disruptions in perceptions, thoughts, feelings and behaviors of the affected person (Nolen-Hoeksema, 2014). People with schizophrenia experience hardships in their social functioning and quality of life as a direct result of their illness such as difficulties in getting competitive jobs, marriage and living independently (Corrigan, 1998). Besides struggling with the symptoms and dysfunctions of the illness, the patients also have to cope with adverse societal reactions and expectations that mainly stem from the misconceptions of mental illness (Corrigan, 1998; Corrigan & Watson, 2002b; Schulze & Angermeyer, 2003).

The symptoms of the illness as well as the label of ‘mental illness’ lead the public to see mental illness as a deviation from ‘normality’ (Corrigan, 2000). Furthermore, the media portraying negative images also contribute to public’s endorsement of stigmatizing attitudes toward these people (Corrigan, 1998; Dickerson, Sommerville, Origoni, Ringel, & Parente, 2002). Public stigma toward people with mental illness is based on the beliefs that people with mental illness are dangerous and unstable and they should be feared and kept away from, they are irresponsible and cannot live on their own so they should be cared for and decisions about their lives should be made by others (Corrigan, 1998; Taylor & Dear, 1981). Also, patients are viewed as weak in character, perceived to be under the control of their disabilities and blamed for causing these disabilities (Eksteen, Becker, & Lippi, 2017). Several studies reported schizophrenia as one of the most stigmatizing diagnoses (Angermeyer & Matschinger, 2003; Angermeyer & Schulze, 2001).

Research suggests that the publicly held stereotyped beliefs, prejudices and discriminatory behaviors have deleterious effects on the lives of people with schizophrenia. For instance, in their longitudinal study testing the consequences of stigma, Link, Struening, Rahav, Phelan, and Nuttbrock (1997) showed that the majority of people who had been hospitalized for mental illness reported being rejected and being avoided. When outpatients with schizophrenia were asked about their stigma experiences, 70 out of 74 patients had worries about being viewed unfavorably due to having a psychiatric disorder and receiving psychiatric treatment. Also, many participants had the experiences of being treated as less than competent and hearing others making offensive statements about people with mental illness (Dickerson et al., 2002). Society’s negative reactions have equally harmful effects on the well-being of those affected. Studies have shown that public stigma is associated with increased symptoms (Ertuğrul & Uğur, 2004), higher depression (Link et al., 1997), poorer self-esteem (Link, Struening, Neese-Todd, Asmussen, & Phelan, 2001; Lysaker, Tsai, Yanos, & Roe, 2008) and social withdrawal (Ertuğrul & Uğur, 2004; Ritsher & Phelan, 2004), which in turn decrease quality of life (Sibitz et al., 2011).

Besides the publicly held negative attitudes, stigmatization can take a different form where some people with devalued characteristics absorb these stereotyped beliefs about themselves. This type of stigma is called internalized stigma in which negative stereotypes in the society become facts for the person. That is, the individual agrees with the societal attitudes such as people with schizophrenia are dangerous, then believes and applies them to himself or herself such as ‘I am threatening’, which leads them to social isolation and experience negative emotional reactions such as feelings of inadequacy and decreased self-esteem and self-efficacy (Corrigan & Rao, 2012; Corrigan & Watson, 2002a; Corrigan, Watson, & Barr, 2006; Watson, Corrigan, Larson, & Sells, 2007). Due to the psychiatric severity of the diagnoses and greater public stigma attached to the disorder, internalized stigma is expected to be higher in people with schizophrenia (Çam & Bilge, 2007; Taşkın, 2007). A systematic review and meta-analysis of 127 studies conducted by Livingston and Boyd (2010) concluded that the level of self-stigma is negatively associated with hope, empowerment, self-esteem, social support and quality of life.

The main purpose of the current study was to explore how Turkish people with schizophrenia perceive their illness experience. More specifically, their perceptions on what caused their illness, how the illness affected their lives, the burdens of living with the illness, societal reactions and attitudes toward schizophrenia, how much they endorse these views and the impacts of the societal reactions were explored using a qualitative approach.

Method

Participants

The sample included 23 people with schizophrenia, all members of two schizophrenia support associations, namely, Ankara Living with Schizophrenia Association and Ankara Schizophrenia Patients and Relatives Solidarity Association, both located in Ankara, Turkey. All participants were assumed to be in remission as compliance with medical treatment is essential for becoming a member and attending these associations.

Demographic information of the participants can be seen from Table 1. As can be seen from the table, the majority of the participants were male and single, which reflects the gender and marital status distributions of the members of the associations.

Table 1.

Demographic information of the participants.

Variables	N (23 participants)	%
Gender
Female	4	17
Male	19	83
Relationship status
Single	19	83
Married	1	4
Divorced	3	13
Education level
University	5	22
High school	15	65
Secondary school	2	9
Not specified	1	4
Employment status
Unemployed	15	65
Retired	4	17
Employed	3	13
Students	1	4
Urban/rural living status
City	23	100

Materials

The assessment instrument began with a demographic information form, enquiring about age, education level, employment status (i.e., unemployed, retired, employed or student), marital status (i.e., single, married, divorced or other) and the number of people living in the same household with the participant and their relationship to the participant. The research instrument continued with open-ended interview questions enquiring about how their disorder had begun and proceeded (‘Can you tell me about how your illness started and proceeded’?), how living with schizophrenia affected their lives and life goals (‘Can you tell me how your illness affected your life and goals, from its beginning to now’), the attitudes and behaviors of the society toward people with schizophrenia (‘How does the society treat people with schizophrenia’? ‘What does the society think about people with schizophrenia’?), how much they agree with the society’s opinions (‘In general, how much do you agree with the opinions of the society about people with schizophrenia’? ‘How much do you believe that these opinions are true for yourself’?) and whether these reactions affect them (‘Do these reactions affect you? And how’?).

Researchers

The research team included one female clinical psychology professor, two female students from the clinical psychology master’s program and five female senior psychology students. Graduate members of the research team, especially the first author, have extensive experience in working with people with schizophrenia and their families. She has been regularly giving a field practice course, every term over the past 12 years in the two associations from which the participants were recruited.

Procedure

The study was granted ethical approval by the Middle East Technical University’s ethical board and all the participants gave oral consent for participation. The interviewers were eight senior psychology students taking the field practice course given by the first author, involving a placement in one of the associations for 1 day a week during the semester. Students were given extensive training for conducting the interview by the professor and the teaching assistant of the course. The training lasted 4 days and involved the familiarization of the interviewers with the related literature and research questions, followed by a role play of the administration of the questionnaire by the professor and the teaching assistant, and subsequently, all the interviewers administered the questionnaire to another interviewer and were given feedback on their styles of posing the questions and the probing. The interviewers and participants were already familiar with each other due to being placed in the associations during the field practice course. The interviewers asked for volunteers for participating in the study, received informed consent from the participants and administered the interview in available and private rooms in the associations. Due to the familiarity with the interviewers, all of the participants approached accepted to participate in the study. The interviews were recorded and later transcribed by the interviewers.

The research team used thematic analysis in evaluating the main themes used by the participants. Braun and Clarke’s (2006) guideline for thematic analysis was followed while analyzing the data. First, each researcher read all the transcribed data to become thoroughly familiar with the data and listened to the voice recordings when they were not sure about the written transcript. Subsequently, the research team divided into three groups including at least one graduate psychologist in each group and each group generated initial codes and discussed it with other group members. Subsequently, each group searched for themes and coded segments after discussing each segment in detail. Finally, the three groups met and discussed the general themes and subthemes in several meetings and the analysis was finalized when consensus was reached.

Results

The thematic analysis of the transcripts revealed four general themes. These four general themes and their subthemes are shown in Table 2.

Table 2.

General categories and subcategories of perceptions on living with schizophrenia.

General category	Subcategory
Causal attributions for illness	Personality
	Stressful life events
	Substance abuse
Impact of illness	Social domain
	Family domain
	Occupational domain
	School/education domain Emotional burden
	General devastation Positive effects
Living with illness	Socialization opportunities
	Gaining knowledge about illness
	Coping by avoidance
	Medical treatment
Stigmatization	Societal attitudes and behavioral reactions
	Emotional reactions
	Agreement with stigmatization
	Impact of stigmatization

The first general theme, causal attributions for illness, reflected what the participants saw as causes of their illness. Personality characteristics, as a subtheme, tapped characteristics, such as being too sensitive, introverted, obsessive or nervous since childhood as important causal agents for the illness. For example, a participant expressed this as follows:

My illness … I have been an introverted child since secondary school. I couldn’t talk even if I went to social gatherings, this led to my illness. (Participant 12, male, 53)

Stressful life events, the second subtheme of causal attributions, included adverse events, such as endorsement for compulsory military service, experiencing terror events, having conflicts and traumatic life events in the family, such as unexpected death and divorce of parents, unmet expectations for marriage and falling hopelessly in love. One participant described the effect of an unfulfilled romantic relationship as follows:

It is because of a girl … we parted, we were engaged and all … and we broke up. I became ill because of that. (Participant 10, male, 42)

Substance abuse was the final subtheme of the causal reasons. The participants mentioned the use of narcotics, in some cases together with alcohol as a trigger of their illness. One participant stated,

I have done something wrong. I took alcohol with narcotic drugs. That devastated me. Everything came one after another after that. (Participant 18, male, 58)

The impact of the illness on various domains of the patients’ life was the second general theme, having six subthemes all referring to how the illness dramatically altered their lives and led to unfulfilled expectations. The social domain, reflected the impact of the illness on social relationships, lack of motivation for socialization, avoidance of social life, not being able to leave home, the negative societal reactions encountered and the resulting alienation. For this theme, being able to attend the association was frequently given as a rescue factor for preventing alienation. All these led to isolation and an unfulfilling social life. A male participant expressed this as follows

It affected my social life. I did not bother with my social surroundings, I ended all my relationships. After the association was formed I started coming here. The association made me a bit social. I have been coming here for 10 to 11 years’. (Participant 15, male, 41).

Family life was another area affected by the illness. Participants stated that they had conflicts with their family members, they felt that they cannot fulfill the expectations of their families, their families tried to control them, they felt that they were not trusted and they felt sad and guilty because of the burden they gave to their families. The fact that they could not form their own family was also mentioned. One participant expressed this as follows:

Because of this illness, I cannot have a child. This is what hurts me the most. Will the child be healthy or not? This is what hurts me the most because I like children a lot. (Participant 19, female, 26)

The occupational domain tapping barriers in getting a job and, even if they manage to get one, being unable to continue working, not earning money and functional impairment in doing the work was another area affected by the illness. Here is what a participant stated,

It affected my occupational life. I cannot work, I get tired very easily. I feel weak, get tired quickly. I feel sleepy during the day. Of course, these are probably from the drugs I take; they say these are side effects of medication. (Participant 15, male, 41)

Another participant expressed the negative attitudes of employers:

I have applied to hundreds of jobs. They ask ’What is your disability’? When I say schizophrenia, they say no way and get away. (Participant 11, male, 40)

School/educational life was another adversely affected area. Participants stated that the illness prevented them from completing their studies, in reaching their educational goals and decreased their academic functioning. One participant described this as follows:

This illness causes distractions in attention and concentration, because of the voices I hear I could not concentrate. Because my illness started when I was in high school, I couldn’t comprehend the lectures. (Participant 19, female, 26)

Emotional burden, tapping the hopelessness and anhedonia, was another area related to the impact of the illness. Participants described how they felt powerless, helpless, hopeless, not getting pleasure from anything, feeling restricted in their options in life and lacking motivation. One participant expressed this emotional burden as follows:

Brain disease is difficult. You do not have a motivation for living. We live out of necessity. Thoughts of suicide pop up to my mind from time to time. In fact, it came to my mind only the other day. So, I have stress, distress, suffocation … like that. (Participant 18, male, 58)

General devastation of life was another category reflecting the perception of a total destruction of one’s life because of the illness. In this theme, rather than mentioning specific effects of the illness, the participants expressed that their lives have totally been destroyed because of the illness. A participant described this as follows:

I have given up on everything after my illness. Before I used to laugh at everything, but now I am not like that. I gave up on marriage, going somewhere else, starting a new life. These things won’t happen to us anymore. We will live like this, won’t we? (Participant 20, male, 48)

Despite all the negative impacts of the illness, some positive effects were also mentioned by some of the participants. They stated that because of the illness they got early disability retirement, their relationship with their family improved and they experienced acceptance and love from their relatives and teachers; the illness gave them a chance to develop alternative perspectives in their lives. One participant described his relationship with his family as follows:

My family cares for me a lot, and I also care for them. This illness attached us even more. I became closely attached to my family. Really, this is the advantage of the illness. (Participant 10, male, 42)

The third general theme, about living with the illness, mostly related to what the participants found helpful in managing their illness. This theme had the subthemes of socialization opportunities, gaining knowledge about the illness, coping by avoidance and medical treatment.

Socialization opportunities mostly related to the atmosphere of the associations as a facilitator for their well-being. Participants believed that by being members they developed themselves, their self-esteem increased, they developed relationships, they relaxed, had access to knowledge about job opportunities, increased their knowledge about the illness and got support and understanding. A participant expressed this as follows:

I came to the association. This place enabled me to socialize. I have been coming here for the last 10 years. I show effort, I develop myself in the cafe. I work … social situations … I take my drugs regularly, go to my doctor for my controls. I have a busy social life; I am like a social field. (Participant 4, male, 45)

Gaining knowledge about the illness by having the opportunity to meet others with schizophrenia, getting information about the illness and also the family learning about the illness through the family meetings in the association were mentioned as supportive. One participant expressed the impact of increased knowledge on their family:

My family did not understand my illness in the first years. They have attended the family meetings, and in this process, they became more tolerant. (Participant 7, male, 53)

Coping by avoidance was another subtheme that appeared as helpful in living with the illness. The participants believed that hiding their illness from others or giving a different label for their illness rather than schizophrenia to avoid stigmatization, not caring too much about the illness, sleeping a lot and accepting the illness were helpful ways for living with their illness. A participant described how he conceals his illness, as follows:

They cannot notice, they won’t understand that I have schizophrenia unless I tell them … In fact, I am comfortable, I don’t show others that I am ill, I live like a healthy person. I try to hide, however sometimes without noticing I reveal my illness. (Participant 16, male, 41)

Medical treatment was another subtheme on what enables them to continue living with schizophrenia. Here, the participants stressed the value of medicines in changing their symptoms, making them more like normal people, more social and less introverted. One participant described the effects of medication as follows:

I was more introverted in the past, I was not social. These medicines changed me, they changed every aspect of me. My life changed. I am saying it is good in this way. (Participant 22, male, 35)

The last general theme was related to stigmatization and had three subthemes, namely, societal attitudes, behavioral and emotional reactions, agreement with stigmatization and the impact of stigmatization.

Societal reactions were the mostly talked about subtheme in the general theme of stigmatization. Participants stated that in general, the society has very negative attitudes and both behavioral and emotional reactions to people with schizophrenia. They evaluated these reactions as alienating, dismissing, belittling, humiliating and distancing. The participants stated that the society, in general, does not have adequate information about schizophrenia. They also mentioned that people are afraid of them. Furthermore, they talked about the negative impact of the label of ‘schizophrenia’ on others. They stated that others do not trust them, expect violence from them and view them as incapable of assuming social roles, such as employment or marriage.

A participant talked about negative societal reactions as follows:

So, I don’t know, I hear from people, he is schizophrenic, they make fun, behaviors like that. They don’t regard you as a person. As if you are an alien from the space or you are a leper. (Participant 11, male, 40)

One participant expressed how the label schizophrenia frightens people:

Once you get the label schizophrenia, when you say it they are frightened. They think we may be dangerous, give trouble and they keep away. (Participant 18, male, 58).

The second subtheme under stigmatization was related to the beliefs of the participants on whether these societal reactions and attitudes are valid. Here the participants made a distinction between whether these are true for themselves and for other people with schizophrenia. For themselves, they seemed to only partly agree or totally disagree with these negative reactions, mainly stating that they are only true for when they have an acute period or when they stop taking their medication. However, they also said that the fact that they cannot hold regular employment, and that they do not fulfill social roles such as marriage may render these societal views somewhat valid. One participant explained his conditional agreement as follows:

Really, as I said in some periods I stopped taking my medication and treatment. There were family problems, I did not do what they asked, and I was not acting with them. I became violent, but rarely. I was violent only a couple of times’. (Participant 17, male, 37)

One participant stressed how he can manage to live independently and totally disagreed with the societal views:

I don’t agree. I am a person with a sound mind. I live on my own. I lost both of my parents. I can stand on my own feet. I have a salary from my father. I pay my own rent. (Participant 3, female, 58)

As for other people with schizophrenia, again there was partial agreement, as expressed by one participant:

If patients with schizophrenia use their medication regularly, they don’t have an acute crisis, they don’t lose control. Then, they are not different from normal people. (Participant 5, male, 61)

However, some participants stated that they totally disagreed with societal attitudes:

People do not investigate adequately; they label people with schizophrenia as crazy. Schizophrenia is not madness. It is an illness, perhaps we have a deficiency or excess of some chemicals in our brains, we try to balance them with medication. (Participant 7, male, 53)

The last subtheme, impact of stigmatization, reflected how the participants were affected by the negative societal behaviors and attitudes, and also how they coped. First, they felt alienated, sad, unsafe, distressed, pessimistic and hopeless. They were limited in certain social roles such as getting a job, being able to marry and have limited social networks. In terms of coping with these adverse reactions, some participants stated that they try to ignore all the negative reactions and some said that they got used to them. Participants also stated that there are exceptions in the society; some people who have knowledge about schizophrenia are more accepting and tolerant toward them. One participant expressed how all these alienate him:

It alienates. It alienates because no one wants to communicate with you … no one wants to be friends. They reject you, push you away … what happens … you become lonely. You are left on your own. (Participant 11, male, 40)

Discussion

The current study revealed that having to live with schizophrenia has affected a variety of domains in the participants’ lives to such a degree that it somehow halted their lives. The negative societal reactions seem to have contributed greatly to this burden. The negative societal views on schizophrenia were only partially accepted to be true by the participants.

When asked about their illness process, the participants had a tendency to indicate a cause for their illness, such as being a sensitive, introverted person, encountering stressful life events like terror attacks, traumatic experiences, losing a loved one as well as using substances like narcotics and alcohol. Their tendency to attribute a psychosocial cause including personality, stressful life events and substance abuse while neglecting to mention a biological/genetic cause is in line with the results of previous research (Elliott, Maitoza, & Schwinger, 2011; Holzinger, Kilian, Lindenbach, Petscheleit, & Angermeyer, 2003). Studies showed that caregivers also prefer psychosocial explanations for their relatives’ illness over organic explanations (Holzinger et al., 2003; A. N. Karanci, 1995). Considering the fact that our participants received ample information on the stress-vulnerability model of schizophrenia through a number of seminars held in the associations, this result seems to show that the stress component of the stress-vulnerability model may be more easily noticed and accepted by lay people.

Impact of illness appeared as the second general theme, covering the direct effects of schizophrenia on various domains of patients’ life. Our results confirm that schizophrenia affects the patients’ vocational, educational and family life negatively. Participants expressed difficulty in finding a job, or continuing their existing work; similarly, they had barriers in achieving their academic goals. At the same time, schizophrenia interfered with socialization, which created feelings of isolation and an unfulfilling social life. The participants saw membership in an association as a rescue factor for isolation and lack of support. Moreover, the participants both complained about not being able to form their own family and conflicts with their family of origin. Participants expressed feelings of sadness and guilt due to being a burden on their families. Similar results were reported by Wong, Kong, Tu, and Frasso (2018), where participants with schizophrenia had the feelings of shame, inferiority, self-disappointment and felt being a burden on the family. Nevertheless, as opposed to previous studies, despite all the burdens of schizophrenia on their lives, some participants focused on the positive effects of the illness like getting early disability retirement, experiencing love and acceptance from their families and developing alternative perspectives in their lives. Thus, even though studies conducted over the years have reflected schizophrenia as a devastation of one’s and families’ lives, the current findings pointing out some positive effects may guide clinicians to focus on these transformations and help patients develop new perspectives and a more satisfying life.

The participants mentioned helpful ways to live with the illness. By providing support, socialization and knowledge, the associations were found to be very helpful. Social support needs of people with schizophrenia are largely unmet. N. A. Karanci, Gök, Yıldırım, and Borhan (2017) found that being a member of an association increases well-being and quality of life of the people with schizophrenia due to providing informational, emotional and socialization support. Participants also stressed the importance of medication use in terms of healing their symptoms and making them more social. Given the low medication compliance as an increased problem in people with schizophrenia (Acosta, Hernández, Pereira, Herrera, & Rodríguez, 2012), participants’ acknowledgments on the importance of medication adherence can also be related to the information they continually get on the necessity to use medication in the association.

In agreement with previous studies showing that people with schizophrenia choose to conceal their diagnoses, or that they selectively disclose it to people who can empathize with them (Corrigan, 1998), some of the participants of our study also stated that coping by avoidance is helpful. This is very understandable since people with schizophrenia encounter stigma and discrimination in their lives (Angermeyer & Matschinger, 2003; Dickerson et al., 2002). Thus, to avoid stigmatization, participants reported hiding their illness or giving it a different label. Also, not caring much about the illness and sleeping a lot were the other strategies that participants found helpful. Although these strategies may alleviate short-term distress, it can be a risk factor for anticipatory stigma (Vauth, Kleim, Wirtz, & Corrigan, 2007) and alienation.

Consistent with the literature, the participants expressed high levels of adverse reactions from the society. These reactions were perceived as alienating, dismissing, belittling and humiliating by the participants. Although high levels of stigmatization seem to be an unexpected finding in a predominantly Muslim and collectivist culture where patients with schizophrenia are expected to have more chance of having contact with the society, the study conducted by Ertuğrul and Uğur (2004) in Turkey also supported these findings by concluding that in spite of the social cohesion, stigma is also a problem in developing countries like Turkey. N. A. Karanci et al. (2017) asserted that stigma can operate more robustly in Turkey due to lack of knowledge about the psychiatric illness and lack of an adequate community-based care model. A review conducted by Çam and Bilge (2013) concluded that in Turkey, people with schizophrenia encounter the highest stigmatization and its negative consequences among people with mental illness. Although one of the aims of the National Mental Health Action Plan, published in 2011, was fighting with stigmatization, the implementation of this plan is still in its infancy (Ulusal Ruh Sağlığı Eylem Planı, 2011).

The participants seemed to be undecided on whether the societal views about schizophrenia are true. There were total disagreement and partial agreement with the negative views. They believed that the societal views may be true for periods in which medication is not used or in acute periods of the illness. However, some believed that because they cannot work or get married, the views may be true. On the contrary, some believed that they can live independently and manage their affairs, and thus, the stigmatization is not valid. Although they did not seem to fully accept these negative societal views, participants reported experiencing the negative effects of stigma like difficulty in finding a job, marrying and having social networks, which led them to feel alienated, sad, unsafe, distressed, pessimistic and hopeless. Stigma has been found to lead to decreased self-esteem, self-efficacy and decreased quality of life in previous studies (Livingston & Boyd, 2010; Lysaker et al., 2008). The participants of the present study only partially endorsed negative societal attitudes; thus, they did not exhibit an apparent internalized stigmatization. Although limited in number, internalized stigma studies conducted in Turkey showed high levels of internalized stigma and its negative effects like decreased self-esteem, hope, self-efficacy and feelings of shame and guilt (Çam & Bilge, 2013; Sarıkoç & Öz, 2016) in people with schizophrenia. Therefore, the lack of any clear theme related with internalized stigma in the current study may be related to the social support and information they received in the association. It has been shown that, regardless of symptom severity, having larger and stronger social ties is related with lower internalized stigma in people with serious mental illness (Cullen et al., 2017). Therefore, future studies conducted with people with schizophrenia who are not members of associations may shed light on this finding.

The participants stated that people who have knowledge on schizophrenia do not show negative reactions. Familiarity with mental illness and even indirect contact has been shown to decrease stigmatization (Eksteen et al., 2017; Lee & Seo, 2018). Thus, these findings point out that increasing mental health–related exposure in communities and also in schools through education, media and integration of patients to the society would be an efficient way to fight with the stigma of mental illness.

The current study was limited by the selection of participants from two well-established associations for people diagnosed with schizophrenia in Turkey and may not reflect the perceptions of people who are not members of such associations. Furthermore, we relied on the diagnosis of schizophrenia as required by the association to accept new members. Although people can only become members by providing a formal diagnosis from a psychiatric facility and they accept that they are suffering from schizophrenia, the results still need to be interpreted with caution. Future research with people with schizophrenia who are not members of an association will be fruitful to understand the role of belonging in an association on perceptions of living with schizophrenia. In addition, further research using quantitative measures is needed to reveal the levels of internalized stigma and factors related to its development.

Notwithstanding these limitations, the current study suggests that people with schizophrenia experience tremendous burden, and they are confronted with societal stigmatization. Thus, they need the respect and support of the clinicians, their families and the public. Gaining knowledge about the illness, socialization and job opportunities are helpful and avoidant coping seems to be an unhelpful way of dealing with the negative effects of both the symptoms and stigma in their life. Thus, these findings can guide clinicians and mental health workers to develop policies so that people with schizophrenia can have a fulfilling life. For instance, because of the patients’ and families’ lack of knowledge about the illness as well as families’ tendency to blame the patient for the negative symptoms of the illness, it would be important to give psychoeducation about the causes, nature and treatment of schizophrenia. Providing people with schizophrenia social opportunities in which they can freely share their difficulties and feel understood, respected and accepted seems to be highly valuable. Furthermore, providing patients with suitable job opportunities will help them look after themselves, increase their sense of being useful to others and to themselves as well as decrease public stigma by exposing the community to people with schizophrenia. Moreover, clinicians need to become aware of all the domains that are affected by the illness and help patients cope with the burden of illness and stigma by teaching them more adaptive coping strategies. Finally, developing community-based awareness programs and collaborating with the media to disseminate information on schizophrenia would be an important first-step to change negative attitudes of the society.

Footnotes

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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