The self-stigmatization of patients with schizophrenia: A phenomenological study

Journal Pre-proof The self-stigmatization of patients with schizophrenia: A phenomenological study

Shang-Yu Yen, Xuan-Yi Huang, Ching-Hui Chien PII:

S0883-9417(19)30332-2

DOI:

https://doi.org/10.1016/j.apnu.2020.02.010

Reference:

YAPNU 51249

To appear in:

Archives of Psychiatric Nursing

Received date:

22 August 2019

Accepted date:

8 February 2020

Please cite this article as: S.-Y. Yen, X.-Y. Huang and C.-H. Chien, The self-stigmatization of patients with schizophrenia: A phenomenological study, Archives of Psychiatric Nursing(2018), https://doi.org/10.1016/j.apnu.2020.02.010

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© 2018 Published by Elsevier.

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Running head: SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA 1

Title: The Self-Stigmatization of Patients with Schizophrenia: A Phenomenological Study

Running head: Self-Stigma of Patients with Schizophrenia

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Declarationof interest. Declarations of interest: none

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IRB: The institutional review board of the medical center in North Taiwan approved the study

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First author:

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(IRB No.: 2014-08-007A).

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Shang-Yu Yen, RN, MSN, Department of Nursing, Taipei Veterans General Hospital, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan. E-mail: [email protected] Tel: 886(2) 28712121 ext.7682 Address: No.201, Sec. 2, Shipai Rd., Beitou District, Taipei City, Taiwan 11217, R.O.C.

Correspondence author and second author:

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SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

Xuan-Yi Huang, RN, BSN, MSN, DNSc, Professor, Department of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan. E-mail：[email protected] TEL：886(2)28227101 ext. 3170 Fax: 886(2)28213233

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Address：No.365, Ming-te Road, Peitou Distric, Taipei City, Taiwan 11219, R.O.C.

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Third author:

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Ching-Hui Chien, RN, PhD.

Sciences.

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Assistant Professor, Department of Nursing, National Taipei University of Nursing and Health

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365, Ming Te Road, Peitou, Taipei, Taiwan, 11219, R.O.C Tel: +886 2 28227101 ext 3176

E-mail: [email protected]

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Highlights 1. The self-stigmatization process of patients with schizophrenia including origin, suffering, and coping. The three phases of the self-stigma experience represented a dynamic process. 2. All of our interviewees used the change of mind to cope with their self-stigma. This is an important finding of this study.

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3. The study supports the importance to increase awareness of self-stigma and suggests

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effective measures to help patients deal with this challenge.

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Abstract

This study aimed to explore the self-stigma of schizophrenia patients. Qualitative

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phenomenological approach, purposive sampling and unstructured one-on-one interviews

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were used. Narratives were analyzed using Colaizzi’s method. Data saturation was reached after 15 had been interviewed. Three themes and six sub-themes were revealed: the origin of the self-stigma (experience of self-stigma from the outside and the inside), the suffering experience of self-stigma (alienation from others and negative inner feelings), and coping with the self-stigma (acceptance and change of mind). The study supports the importance to increase awareness of self-stigma and suggests effective measures to help patients deal with this challenge. Keywords: schizophrenia, patients, self-stigma

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Introduction Schizophrenia is a chronic and severe mental disorder affecting more than 21 million people worldwide. It is associated with thought disorders that damage the sufferer’s cognitive and behavioral functioning. Consequently, most sufferers require long-term management and

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dedicated care services. Based on the World Health Organization (WHO) Mental Health

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Action Plan 2013–2020, institution-based services will be increasingly supplanted by

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community-based services (WHO, 2018). The lifetime prevalence rate of schizophrenia is

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0.5% in Taiwan (Chou et al., 2015). Even though regular medication can help to stabilize the disease over time, approximately 25–50% of patients are still affected by residual symptoms.

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In recent years, although the general public in Taiwan has developed a more open-minded

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attitude towards patients with mental illness, most people still tend to keep their distance from patients with schizophrenia. This leads to alienation from social and interpersonal interactions, depression, self-harm behaviors, degradation of self-care ability, unemployment, and poor social adaptation (Brown et al., 2014; Lien & Kao, 2019; Yu et al., 2015). Moreover, since the promotion of the policy of deinstitutionalization, patients with a stable disease condition have been encouraged to return to community life, and their care responsibility has shifted from mental healthcare institutions to family caregivers, leading to an increase in the family caregivers’ stress load. Chen (2017) indicated that the better the

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patients’ overall life functions, the better the quality of life of their caregivers and the lower their stress load. Increases in the number of hours of caregiving provided by primary caregivers to patients lead to decreases in their quality of life. The dynamic relationship of mutual influence among family members, the changes in family structure and functions over time, and the stage-by-stage changes in manpower and resources for caring for patients who

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have mental illness and are in predicaments can be predicted (Chen, 2015).

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Furthermore, upon relapse, patients with schizophrenia tend to show strange

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behaviors and alienate themselves from reality. In addition, some media have exaggerated

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their symptoms, causing the general public to form stereotypes of, discriminate against, and hold a negative perception of patients with schizophrenia (Corrigan & Rao, 2012). Foreign

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studies have indicated that many patients with intellectual disability and mental illness

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significantly perceive prejudice or discrimination in healthcare personnel during medical treatment (Pelleboer-Gunnink et al., 2017), which contributes to their self-stigmatization. “Stigma” refers to an aspect of the physicality, personality, or status of an individual experiencing physical, behavioral, or experiential deficiencies as he/she fails to meet the definition of “normal” in society or deviates from social expectations. Such an individual has an identity that differs from their social identity and is alienated from the self and society. Further, such an individual has internalized the perception of inferiority, oppression, departure from normal, shamefulness, and being different (Goffman, 1963). Patients with

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schizophrenia are marked as “people who are different from ordinary people” or “abnormal people” with other moral or behavioral defects (Chou, 2012). Szeto et al. (2013) suggested that stigma can be divided into two types: “self-stigma” and “social stigma.” Self-stigma is an individual’s negative self-perception, which may induce issues such as low self-esteem, poor self-care, and social withdrawal. With respect to social stigma, Corrigan (2000) specifically

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indicated that when members of the public attach the label “mental illness” to an individual,

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this is mainly based on observation of four signals: mental symptoms, lack of social skills,

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physical appearance, and labeling. These stereotypes lead to discrimination against patients

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with mental illness. Self-stigma may arise from the influence of social stigma in the form of, for example, misleading media reports and the misperception of the disease among the

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general public. Patients with schizophrenia living in a society where prejudice and

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discrimination are common are extremely likely to internalize this negative perception, resulting in self-stigma caused by the stigma imposed upon them in the external environment (Smith et al., 2011; Thornicroft et al., 2009). In our literature review we have found that, in terms of the link between social stigma and self-stigma, most previous studies have focused on the discrimination caused by social stigma and seldom paid attention to the vicious circle formed by patients’ own internalization of this prejudice from others in the form of self-stigma. It is thus important to investigate self-stigma further. Over the course of the development of psychiatry, although many foreign

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and domestic scholars have strongly promoted the concepts of “de-stigmatization” and “anti-discrimination,” it remains the case that patients with schizophrenia tend to be hampered by their negative self-perception once they have developed self-stigma. Therefore, during the medical treatment of patients, healthcare personnel should proactively understand patients’ self-stigmatization status, since such understanding may help them to increase the

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patients’ recovery potential and resilience against the disease (Corrigan et al., 2013;

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Pescosolido & Martin, 2015). Furthermore, the existing domestic studies on the

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stigmatization of mental illness are mainly quantitative studies investigating the effects of

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stigmatization on patients and their families, and there is a lack of qualitative studies exploring the self-stigmatization of patients with schizophrenia. To fill this gap in the

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literature, this study aims mainly to explore the self-stigma of patients with schizophrenia.

Methods

This study used the descriptive phenomenological research methods proposed by Husserl. To obtain a picture of the actual sequence of events, we performed in-depth interviews and helped the subjects to recall and elaborate on their stories and self-perception. In addition, we explored the nature of patients’ experiences using a phenomenological approach that placed emphasis on the researchers describing the subjects’ experiences as completely and in as much detail as possible, as well as exploring the meanings of human

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experiences and the essential structure of phenomena using parenthesizing, the method of epoché, and phenomenological reduction (Hsu, 2008; Huang et al., 2006). Participants were selected based on purposive sampling. To be included, respondents had to be over the age of 20, possess the ability to express themselves verbally, and have been diagnosed with schizophrenia for at least two years by a psychiatrist; had to be willing to participate in this

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study and complete the written informed consent form; and had to have been assessed as

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having self-stigma. To confirm the patients’ experience of the self-stigma, we used the

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self-stigma perception scale developed by Han and Chen (2008) to perform an assessment

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prior to enrollment. The patients were requested to complete the scale, and only those whose score met the definition of self-stigma were enrolled. Cronbach’s α for this scale is 0.94,

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suggesting that the internal consistency of this scale is high. In addition, to ensure the

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accuracy of the data, patients with cognitive impairment or a personality disorder were excluded from the study.

Data Collection and Ethical Considerations The institutional review board of the Taipei Veterans General Hospital Medical Center in North Taiwan approved this study. Subjects were enrolled from September 2014 to February 2015, and data were collected via unstructured one-on-one interviews conducted in a private, quiet environment. Each interview lasted 60 to 90 minutes. The interviews used open-ended questions as much as possible to enable the respondents to express their

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subjective ideas and feelings in an open and autonomous manner. We avoided providing guidance to the subjects on how to answer the interview questions. This was done to help ensure that the respondents felt like they were participating in an ordinary conversation, with the aim of reducing their anxiety and caution and assisting them to express their actual self-stigma experiences. Field notes were taken and all interviews were recorded. Participants

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were assured of confidentiality and of the protection of their rights. In addition, specific

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details of the participants’ narratives were changed to ensure anonymity. Data saturation

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occurred after the first 13 participants had been interviewed. However, to increase rigor, we

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enrolled another two patients to verify data saturation, yielding a total of 15 respondents with

Data Analysis and Rigor

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schizophrenia who participated in the interviews.

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The narratives from each interview were analyzed using Colaizzi’s seven-step method (1978). First, we converted the recorded content into transcripts and repeatedly listened to the interview recording until the entire interview content was fully understood. For the analysis process, we extracted the concepts of subjective self-stigma experiences from the meaningful descriptions in transcripts to form sub-themes and themes of common characteristics until we had confirmed that the phenomenological nature of subjective self-stigma experiences had been fully described. All tape-recorded interviews were reviewed several times until no new themes emerged. Clusters of themes were identified based on the formulated meanings, and

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descriptions of the experiences were written as thoroughly as possible. Rigor in this study was achieved by using the methods developed by Lincoln and Guba (1985). We ensured that rigor was achieved by ensuring that the study met four criteria: credibility, dependability, transferability, and confirmability. As a nurse practitioner specializing in psychiatry for 12 years, the researcher had attended courses on qualitative

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research and developed the ability to perform qualitative analyses. During the interview

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process for enrollment, the researcher was able to use verbal and nonverbal communication

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abilities, empathize with patients, and develop a good, trust-based interaction with them. To

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achieve rigor, the researcher acted as the interviewer and used auxiliary tools to collect data, including recording, interview notes, and reflection records, to avoid missing or

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misunderstanding any of the interview data. During the analysis process, the researcher

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constantly reminded herself to remain objective, to enable the respondents to relate their actual experiences. The recording files were converted into transcripts and their accuracy was repeatedly confirmed. Although a qualitative study is limited by the number of interviewees and the difficulty of extending its results to a wider population, we used purposive sampling to increase the diversity of subjects. For example, we enrolled subjects from various groups and areas and in various age, gender, marital status, occupation, cohabitant status, and disease duration categories to increase the representativeness of the research sample.

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Results Of the 15 respondents who participated in this study, nine were male and six female. Two of them were married and 13 were unmarried. Ten were unemployed, one was retired, two worked at a hospital-sheltered workshop, one worked in a factory, and one was self-employed (Table 1). They were recruited from an outpatient clinic and were admitted to a

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daytime ward when enrolled in the study. They had suffered from schizophrenia for a mean of

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15 years. The research results indicated three themes and six sub-themes, including

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experience of the origin of the self-stigma (experience of self-stigma from the outside and the

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inside), the suffering experience of self-stigma (alienation from interaction with others and

change of mind).

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negative inner feelings), and the experience of coping with self-stigma (acceptance and

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Theme 1 – Experience of the Origin of the Self-Stigma This theme refers to the process of self-stigmatization. We found that the respondents perceived rejection and refusal of schizophrenia from the general public, including stigmatization and damage from family and others in terms of language and attitude, from which the subjects’ self-stigma originated. This theme included two sub-themes: “experience of self-stigma from the outside” and “experience of self-stigma from the inside.” 1.1 Experience of self-stigma from the outside. This refers to the influence of external factors on the self-stigma. These factors included the social aspect (e.g., neighbors,

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the broader community, mass media, and healthcare personnel) and the family aspect (e.g., parents and siblings). The subjects said that they had started to face discrimination or had been rejected and mistreated while suffering from schizophrenia. Some of their deepest feelings were as follows: My friends were all willing to interact with me before I was diagnosed with

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schizophrenia. However, after I became schizophrenic, no one wanted to interact with me.

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(P1)

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I felt that everyone downstairs was hiding from me. (P3)

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The results showed that the origin of the predicament of the self-stigma experienced by the subjects was mainly rejection by neighbors and the negative impact of the broader

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community’s stigmatization concept.

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Due to the stigmatization, it is very difficult for me to find a job… Patients may not even be given a chance to be hired on probation, and may be directly rejected… (P2) The students in the Department of Chinese call me a psychopath every time they see me… They look at me strangely. (P7) Moreover, most of the subjects mentioned that the mass media still broadcast news associated with schizophrenia in a terrifying and exaggerated manner, increasing their self-stigmatization: The newspapers, magazines, etc. tend to stigmatize mental illness and schizophrenia. I

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hear of patients with schizophrenia committing homicide… I read a news article yesterday that said that a patient with schizophrenia was harassing neighbors. The neighbors could only sleep three hours per day. There was also news about a patient with mental illness harassing neighbors by crying out, ringing doorbells, and banging on doors. The media tends to describe us as destroyers, troublemakers, murderers, or people who do strange and crazy

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things… (P6)

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Some subjects also mentioned that their self-stigma originated from the words and

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behavior of healthcare personnel. They said that they felt despised or insulted by medical and

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nursing personnel during their medical treatment, were treated with an unfriendly attitude, or were ridiculed:

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I had not even seen the doctor yet, but he told me that I suffer from mental illness.

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(P3)

When I stayed at the XX Hospital, I heard the nurses, including the head nurse, laughing at us. (P15)

The subjects’ long-term suffering experience of rejection and refusal by others gradually increased their self-stigmatization. There were also subjects who experienced no support from their family, but instead experienced misunderstanding or discrimination from them, which increased their self-stigmatization: My family views me as trash. They call me trash… They complain that I cannot work

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to earn a living even though I am physically healthy. (P6) 1.2 Experience of self-stigma from the inside. This refers to the influence of internal factors on the self-stigma. The subjects suffered from “interference by disease symptoms” such as delusions, auditory hallucinations, and psychotic episodes. This “functional deterioration” resulted in “internal self-stigmatization.”

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I had auditory hallucinations when I studied… I would laugh on my own… (P1)

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Normal people cannot hear those voices, and neither do they murmur like I do. (P3)

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The voice once told me that he is from the National Security Bureau and would like to

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recruit me as an agent. He told me that they are licensed agents and condemned me as useless trash for being unable to work. The voice kept condemning me. (P15)

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The subjects described how they suffered from the interference of their symptoms

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after the onset of schizophrenia. In addition, they experienced behavioral disorder and strange behavior, inducing the idea that “I am different from normal people.” Moreover, schizophrenia leads to functional degradation in areas such as self-care and cognitive function. The subjects tended to be trapped by negative emotions, which deepened their self-stigmatization: Patients with severe schizophrenia may fail to ever overcome the illness, and may have to live in an institution for the rest of their lives. They may be locked in a ward or live in a psychiatry center. They may also experience severe functional degradation to the point of

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acting like young children. They may lose the ability to look after themselves. Patients who are unable to take care of themselves may even drool like an infant… I can feel that I am experiencing functional degradation. For example, I cannot recall the names of some people. (P6) Theme 2 – Suffering Experience of Self-Stigma

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This refers to the phenomenon by which patients experience the suffering process of

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self-stigmatization. The subjects described their fear of interacting with people and the

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resulting experience of inward loneliness after the onset of schizophrenia. Most of them also

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experienced depression and constant sadness due to the interference of their symptoms. They described feeling as if they were alone in the dark, and said they experienced low self-esteem

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and shame and were worried about interacting with others.

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2.1 Alienation from interaction with others. This refers to the suffering experience of alienation from the self and interaction with others due to the self-stigma. The subjects described their disease process and indicated that they had experienced alienation and withdrawal from social interactions because they suffered from schizophrenia and were worried about interacting with others. Their suffering was mainly caused by their worries about the strange attitude of others, failure to express their own opinions during communication with others, and the occurrence of strange words and deeds during their interaction with others.

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I try to stay self-contained and escape from the public. (P1) I seldom interact with people, and I cannot face my friends. (P5) 2.2 Negative inner feelings. This refers to the suffering experience of negative inner feelings caused by the self-stigma. The subjects generally expressed having negative inner feelings, including sorrow, inferiority, and shame.

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2.2.1 Sorrow. Most of the subjects said that they had to face the suffering process of

though they were in an endless dark tunnel.

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the self-stigma alone after the onset of schizophrenia, and they seemed to feel sorrow as

shed tears… (P1)

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I find it unacceptable. However… I feel very sad. When I recall my past, sometimes I

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(P12)

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… I am overwhelmed by such a sad feeling. It is a very pitiful and sad emotion…

2.2.2 Inferiority. Most of the subjects mentioned that they experienced a strong inward sense of inferiority compared to others after being diagnosed with schizophrenia. They generally felt that they were poorer in either academic performance or work ability. They could not get involved in society and felt self-abased and sad about themselves. My learning ability is poorer than that of ordinary people… the cause may be my illness… I have a sense of inferiority. (P4) I have a sense of inferiority… I wonder why I suffer from this illness and why I am

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unconscious and tend to be in a daze. (P5) 2.2.3 Shame. The subjects also indicated that they felt shameful to have suffered from schizophrenia. They cared about the strange attitude exhibited by others towards them, and were worried about the negative image portrayed of them when they were described as a “psychopath” or as having “mental illness.”

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I do not dare to say that I am working in the factory for patients with disabilities,

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because I am afraid of being stigmatized. I feel shameful because I used to perform well

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academically in school. Unfortunately, the development of my life seems to get worse and

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worse. (P2)

Yes! Shame… Society treats me as a psychopath. (P6)

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I feel shameful. My suffering from schizophrenia disgraces my family. (P7)

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Theme 3 – Experience of Coping with Self-Stigma This refers to the coping process of facing and dealing with the self-stigma. The subjects indicated that how a patient responds and adjusts to the self-stigma caused by the illness usually varies according to what he/she has experienced. Most of the subjects suggested that it was their destiny to suffer from schizophrenia. They had no choice but to accept this unchangeable fact. 3.1 Acceptance. This refers to patients’ use of acceptance to face and deal with the self-stigma. The subjects generally described how they had accepted everything, including

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“accepting their destiny helplessly” and “accepting God’s will.” The subjects suggested that their destiny could not be overcome. I rely totally on social assistance. I do not have a sense of security. But I accept my fate! (P5) I feel regret… I am mad at myself for being ill… I cannot do anything… I can only

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accept my destiny… I used to refuse to take drugs, but now I have accepted it… (P8)

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I do suffer from schizophrenia… I accept it… I accept my fate! (P14)

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3.2 Change of mind. This refers to patients’ use of a change of mind to face and deal

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with the self-stigma. Although the subjects faced the undeniable fact of illness for the rest of their lives, they could eventually use “a change of mind” to respond to the self-stigma that

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had been caused by that illness.

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I have to take drugs for the rest of my life… It’s very important for me to take drugs. As long as I take drugs, I can live… (P7) I’ve changed my mind. I only have to try to live happily… Everyone will pass away one day. I’d rather live happily than live painfully… I try to stay happy and not think too much… (P4)

Discussion In the process of analysis, we found that the three themes represented the process

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phases (see Figure 1). After "the experience of the origin of the self-stigma," the subjects underwent "the suffering experience of the self-stigma", which triggered "the experience of coping with

self-stigma." We also found that the three phases of the self-stigma experience

represented a dynamic process, meaning that the three processes would influence one another when certain situations or problems were encountered.

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Experience of the Origin of the Self-Stigma

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The self-stigmatization comes about as a result of the influence of external factors,

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such as exclusion by neighbors, the public, mass media, medical personnel, and family

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members. It is easy for others to misunderstand patients with schizophrenia, especially when the patients are disturbed by their symptoms and exhibit disordered behaviors, and may attack

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or cause injury to others, causing others to fear and avoid interacting with them. In this study,

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the interviewees generally stated that they often faced discrimination or exclusion due to their diagnosis of schizophrenia. Some interviewees described the experience of being considered strange by other people and being rejected immediately in job interviews after the onset of schizophrenia. The interviewees described held an attitude of rejection and refusal towards patients with mental illness. These feelings of being scared, afraid, or ashamed of patients with mental illness are similar to those described in some other studies (Griffiths et al., 2006; Yanos et al., 2010). In addition, Lien and Kao (2019) found that, although Taiwanese people can gradually accept mental illness under the influence of a campaign to promote

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de-stigmatization, they still expect that patients will be kept away from the public. This echoes the experiences that the interviewees in this study described: friends gradually left them, neighbors ignored them, and others rejected them due to their illness. Furthermore, some studies have suggested that due to the lack of a correct and complete concept of mental illness in the broader society, the stigma of mental illness among rural residents is more

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obvious than that among urban residents (Girma et al., 2013). However, this study was

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conducted only in a medical center in a northern city; currently, there is no relevant domestic

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study that explores the difference in the degree of mental illness stigma between urban and

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rural residents. Therefore, it is suggested that correlation studies be conducted in different cultural contexts to better understand whether different cultural groups have different degrees

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of stigma toward mental patients, and the reasons for these differences.

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In terms of the influence of mass media, most patients stated that currently the media still reports on social events involving patients with schizophrenia in a thrilling, exaggerated, and fragmentary way, depicting them as aggressive and violent, which fosters incorrect perceptions and fear of patients with schizophrenia among the public. Smith et al. (2011) pointed out that incorrect reports in some media, coupled with exaggeration of the symptoms of mental illness, have aggravated people's fear and dread of mental illness patients. Magliano et al. (2008) also found that when patients with schizophrenia show violent behaviors due to symptom interference, some news media reports present mostly negative

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images. As a result, the patients and their families face shame and social discrimination. These findings are similar to the statements of the interviewees in the present study that many newspapers and magazines depicted them as people who commit sabotage and murder, and who exhibit disordered and strange behaviors, which has gradually caused the public to have increasingly negative views on patients with schizophrenia.

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In terms of medical personnel, some interviewees mentioned that they had been

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despised, treated unkindly, and ridiculed by medical personnel during the medical treatment

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process. This result is consistent with those relating to the mental illness patients mentioned

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in Pelleboer-Gunnink et al. (2017), and the patients obviously felt that the attitude of the medical care personnel during the treatment process was biased or discriminatory. This

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research finding calls for medical institutions to develop preventive measures against this

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phenomenon, including relevant education and training. Wang et al. (2017) also proposed measures to improve this situation, including developing the humanistic knowledge of relevant mental health care personnel, teaching them to treat patients beyond the framework of mental illness, regularly organizing relevant clinical education and training, and strengthening the capacity of professionals for independent thinking, so that they can be more sensitive to changes in the patients’ perception, emotion, and behavior. Furthermore, based on our findings we recommend that medical personnel should be better educated about factors in patients’ psychological care that may cause self-stigmatization, so that this phenomenon can

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be reduced. In recent years, due to the policy of deinstitutionalization, most patients with mental illness have returned home to live with their families after their medical condition has stabilized. The families thus not only have the burden of care, but also suffer from the stigma associated with the patient’s condition. Patients may also be hospitalized repeatedly due to

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relapse, causing the families to lose patience with and withdraw support for the patients over

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time. The patients then become even more trapped in a hopeless situation. Some of this

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study’s interviewees said that they had suffered from verbal discrimination and the feeling of

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being unloved during their illness, due to a lack of family support, resulting in self-stigmatization. Many previous studies have also pointed out a significant correlation

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between the self-stigmatization of patients with mental diseases, family functioning, and

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disease prognosis, indicating that patients with mental diseases rely greatly on family support in the process of their illness. However, it is often difficult at first for a family to accept that one of their members has a mental illness, due to prejudice and discrimination against people with mental diseases. The long-term care process can also lead to a gradual loss of patience with patients among family members (Chou, 2013; Lin, 2001). In this study, one of the main causes of the patients’ self-stigmatization was interference by the positive symptoms of their disease. Most interviewees reported that while suffering from the disease, interference from symptoms such as auditory hallucinations,

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delusions, and psychotic episodes, caused them to think differently from ordinary people. In addition, the interviewees generally suffered from functional degeneration and maladjustment in terms of work, interpersonal relationships, and self-care. Furthermore, the frequent occurrence of stiff limbs, dull eyes, and slow reactions as a result of taking antipsychotic drugs made them see themselves only in the role of a patient, which deepened their

of

self-stigmatization. Most of the respondents also mentioned that the gradual deterioration in

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ro

their self-function as a result of the disease affected their performance ability and resulted in a

re

deep feeling of self-stigma. These findings are similar to those of some other studies

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(Gerlinger et al., 2013; Vrbova et al., 2017).

In the study, the source of the patients' self-stigmatization was not only external

na

factors but also, more importantly, their own behavioral retreat and lack of self-confidence

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due to the unpredictable and uncontrollable nature of their disease. Most of the interviewees also mentioned the difficult situation their illness put them in, since it made them unable to keep up with colleagues' progress at work, resulted in a lack of understanding of work content, reduced their ability, caused forgetfulness, and resulted in a feeling of inferiority compared to others. Some interviewees felt that their self-care ability had degraded, and they had an unwillingness to perform daily functions such as washing, dressing, and eating. This, combined with the social stigma they experienced, resulted in or increased their self-stigma over time. We also found that when the public produced stereotyped images of patients with

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mental diseases, the patients identified with this social stigma and adopted negative beliefs about themselves, resulting in low self-esteem, self-care, and social withdrawal. Approaches to improving schizophrenia patients’ feelings about themselves is thus a topic that requires urgent attention. Thornon et al. (2016) used a documentary to help patients to understand the negative stereotypes about mental illness sufferers and their own social

of

withdrawal to improve their coping skills. Liene et al. (2018) found that guiding patients with

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schizophrenia in how to perceive themselves positively and correct their self-stigma can effectively reduce their self-stigmatization. However, most clinical care is still focused on

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providing disease care, and little attention is paid to the negative emotions caused by patients’ self-stigmatization. We suggest that the clinical care model for mental health should increase

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self-stigma.

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the assistance provided to patients to guide them in perceiving and improving their

Experience of Suffering from Self-Stigmatization Most of our interviewees stated that they often felt sad as a result of their suffering from schizophrenia. They described their alienation from society, which deepened their inner loneliness and

contributed to

their

immersion

in

the suffering experience of

self-stigmatization. Most of the interviewees expressed the feeling that this suffering was akin to being in darkness; they often felt sadness, inferiority, and shame, and were afraid of interacting with others. This is supported by the findings of Link and Phelan (2014), who

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mentioned that patients suffer from the stigma and the impact of labeling. Most of the interviewees also mentioned that they felt deeply that they were unable to compare themselves with others since their diagnosis with the disease. They generally felt that they had a poor capacity for academic achievement or work and could not enter society. They felt inferior and sad about their own unbearable feelings. In addition, they said that they were

of

ashamed of suffering from schizophrenia, cared about being treated differently by others,

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worried about being described as “crazy” or “psychotic,” and suffered from stigmatization

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and feelings of shame in the same way as a secluded prisoner. This is strongly supported by

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Lai et al. (2017), who discussed the dignity awareness, self-branding, and depressive symptoms of patients with schizophrenia. We therefore suggested that medical staff should

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establish a good relationship and trust with patients, try to understand their suffering

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experience of self-stigmatization, and guide them to affirm the importance of self-value in their care. This would promote positive thinking and psychological well-being. Stigmatization of patients by medical staff will affect their trust relationship, so medical staff should pay more attention to the issue of patients’ self-stigmatization in the care process. Helping students understand the concept of self-stigma during the care education process and strengthening their ability to treat patients with a caring attitude can promote the establishment of a good trust relationship with patients. Other studies also support this view (Kameg et al., 2009).

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Experience of Coping with Self-Stigmatization Most of the respondents said that they had adopted strategies for coping with and adjusting to their self-stigmatization, and these strategies varied according to each individual’s experiences. Most of them regarded suffering from schizophrenia as fate and an unchangeable fact, so they had to choose to accept their coexistence with the disease and

of

taking medicine for life. They had adopted the attitude that the disease was an unalterable

ro

part of their destiny. Wu (1999) used the grounded theory qualitative research method to

-p

explore patients’ experience of self-motivation from acute onset to recovery, and found that

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re

the core concept was “overcoming the sense of loss of control.” Lin (2001) proposed that patients should adopt exploratory methods for coping stigma, and that if others can accept

na

their mental disease, then they can indirectly reveal the disease. In this study, most of the

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interviewees said that they had chosen to accept a way to cope with the illness. They believed that their illness was an unalterable fact, so they faced it with an attitude of acceptance to reduce their suffering from their self-stigma. Few studies thus far have discussed coping with self-stigmatization, so we suggest that future research should further explore coping experiences among a wider range of mental illness patients. In addition, all of our interviewees used the change of mind to cope with their self-stigma. This is an important finding of this study, because no relevant research thus far has presented such results. We suggest that more qualitative and quantitative research be conducted on this topic, and that

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the research results are used in the clinical care process to help reduce the self-stigmatization of patients. Martin (2015) found that if medical care personnel can actively understand the self-stigma status of patients during their process of seeking medical treatment, they can increase the patients’ resilience and coping ability. Huang et al. (2018) also recommended

of

that mental health care personnel should provide care aimed at strengthening patients’

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ro

strategies for coping with their self-stigma, promoting mental health in general, enhancing the

re

acceptance of diseases, and eliminating the negative effects of self-stigmatization. Although

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many scholars in the field of psychiatry have investigated the negative effects of stigma and advocated the concepts of destigmatization and anti-discrimination, our study has shown that

na

most patients still suffer from the pain of self-stigmatization alone. This suggests that the

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concept and attitude of destigmatization in relation to psychiatric patients in society still needs to be strengthened. We therefore recommend that clinical medical personnel should show more empathy and a more caring attitude in the treatment process, to help patients to face and deal with the problem of self-stigmatization. Samariet et al. (2018) pointed out that through nursing education and clinical practice, students can enhance their understanding of patients’ self-stigma and provide the necessary assistance. Peng and Wong (2018) also mentioned the importance of therapeutic relationships. In the care process, more attention should be paid to understanding the patients, so that the appropriate assistance can be

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28

provided. Our interviews strongly demonstrated that professionals should examine and reflect on their own thoughts and attitudes towards the stigma of psychiatric patients before treating them. Only in this way can they understand the self-stigma experience from the perspective of the patients, and help them to improve their coping strategies, enhance their resilience against their disease, and further avoid hindering the path of rehabilitation due to

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ro

of

self-stigmatization.

re

Conclusions and Recommendations

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This study explored self-stigma in patients with schizophrenia, using the phenomenological qualitative research method proposed by Husserl. The research results

na

revealed three themes and six sub-themes: the experience of the origin of the self-stigma

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(experience of self-stigma from the outside and inside), the suffering experience of self-stigma (alienation from interactions with others and negative inner feelings), and the experience of coping with self-stigma (acceptance and change of mind). These three processes were interrelated. It is hoped that these findings may help people to acknowledge the self-stigmatization of patients with schizophrenia and propose effective measures to assist them in coping with it. We make the following recommendations based on our findings: The government welfare policies should seek to meet the actual needs of patients, for example, lowering the discrimination of employer against patients with mental illness, and medical

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professionals should use the media to help the public to develop a healthy attitude towards mental illness and to reduce the negative stereotypes of patients with mental illness. Moreover, it is necessary to help patients to accept their illness with a positive attitude. Improving their ability to respond to their illness and reduce their self-stigmatization is also a very important issue.

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Limitations of the Study

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The sample in this study was drawn from a group of patients with schizophrenia.

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These experiences therefore cannot be generalized to a large population, and a triangulation

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Acknowledgements

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of research methods is suggested for the future study of these phenomena.

manuscript.

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We would like to thank Uni-edit (www.uni-edit.net) for editing and proofreading this

Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

References

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30

Brown, E. C., Tas, C., Can, H., Esen-Danaci, A., & Brüne, M. (2014). A closer look at the relationship between the subdomains of social functioning, social cognition and symptomatology in clinically stable patients with schizophrenia. Compr. Psychiatry, 55(1), 25–32. https://doi.org/10.1016/j.comppsych.2013.10.001. Chen, L. W. (2017) The relationships of self-perceived preparedness, quality of life and

of

caregiver burden in a group of primary family caregivers of patients with

-p

ro

schizophrenia: An exploration of moderating effect. (Unpublished Master’s thesis.)

re

National Taipei University of Nursing and Health Sciences, Taipei.

lP

Chou, L. S., & Yang W. C. (2012). Issues of translation and stigmatization. Taiwan. Newsl. Diagn. Stat. Man. Ment. Disord. (5th ed.), 2(4), 30–32.

na

https://doi.org/10.29477/TNDSM5.201212.0007.

Jo ur

Chou, H. C. (2013). The relationship between self-stigma, family function and prognosis in patients with mental illness. (Unpublished Master’s thesis.) National Taiwan University, Taipei.

Chou, H. C., Lien, Y. J., & Kao, Y. C. (2015). The relationship between self-stigma, family function, and psychological well-being in patients with mental illness. Formos. J. Ment. Health, 28(1), 135–165. Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. In R. S. Valle & M. King (Eds.), Existential-phenomenological alternatives for psychology (pp. 48–

Journal Pre-proof

SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

31

71). New York: Oxford University Press. Corrigan, P. W. (2000). Mental health stigma as social attribution: Implications for research methods and attitude change. Clin. Psychol.: Science and Practice, 7, 48–67. https://doi.org/10.1093/clipsy.7.1.48. Corrigan, P. W., & Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure,

-p

ro

https://doi.org/10.1177/070674371205700804.

of

and strategies for change. Can. J. Psychiatry, 57(8), 464–469.

re

Corrigan, P. W., Kosyluk, K. A., & Rüsch, N. (2013). Reducing self-stigma by coming out

lP

proud. Am. J. Public Health, 103(5), 794–800. https://doi.org/10.2105/AJPH.2012.301037.

na

Gerlinger, G., Hauser, M., De Hert, M., Lacluyse, K., Wampers, M., & Correll, C. U. (2013).

Jo ur

Personal stigma in schizophrenia spectrum disorders: A systematic review of prevalence rates, correlates, impact and interventions. World Psychiatry, 12(2), 155– 164. https://doi.org/10.1002/wps.20040. Girma E., Tesfaye M., Froeschl G., Möller-Leimkühler A. M., Müller N., & Dehning S. (2013). Public stigma against people with mental illness in the Gilgel Gibe Field Research Center (GGFRC) in Southwest Ethiopia. PLoS ONE, 8(12), e82116. https://doi.org/10.1371/journal.pone.0082116. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs,

Journal Pre-proof

SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

32

NJ: Prentice-Hall. Griffiths, K. M., Nakane, Y., Christensen, H., Yoshioka, K., Jorm, A., & Nakane, H. (2006). Stigma in response to mental disorders: A comparison of Australia and Japan. BMC Psychiatry, 6(1), 21. https://doi.org/10.1186/1471-244x-6-21. Huang Y. P., Ursula M. K., John W. S., & Lee S. (2006). Analysis phenomenology and

of

application to nursing research. J. Nurs., 53(2), 49–58.

ro

https://doi.org/10.6224/JN.53.2.49.

re

-p

Huang M. W. (2012). To advocate and rename for “schizophrenia”: An optimistic and

lP

win-win situation. Taiwan. Newsl. Diagn. Stat. Man. Ment. Disord. (5th ed.), 2(4), 33– 35. https://doi.org/10.29477/TNDSM5.201212.0008.

na

Huang, Y. H., Lin, Y. Y., Lee, S. K., Lee, M. F., & Lin, E. C. L. (2018). A correlational study

Jo ur

of the recovery process in patients with mental illness. J. Nurs., 65(2), 64–74. https://doi.org/10.6224/JN.201804_65(2).09. Kameg, K., Mitchell, A., Clochesy, J., Howard, V., & Suresky, J. (2009). Communication and human patient simulation in psychiatric nursing. Issues Ment. Health Nurs., 30(8), 503–508. http://dx.doi.org/10.1080/01612840802601366. Lai, Y. C., Lo S. C., & Yang C. Y. (2017). Exploring the relations of perceived dignity, self-stigma and depressive symptoms among patients having chronic schizophrenia. J. Psychiatr. Ment. Health Nurs., 12(2), 5–12.

Journal Pre-proof

SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

33

https://doi.org/10.6847/TJPMHN.201712_12(2).0001. Lien, Y. J., Chang, H. A., Kao, Y. C., Tzeng, N. S., Lu, C. W., & Loh, C. H. (2018). Insight, self-stigma and psychosocial outcomes in schizophrenia: A structural equation modeling approach. Epidemiol. Psychiatr. Sciences, 27(2), 176–185. https://doi.org/10.1017/S2045796016000950.

of

Lien, Y. J., & Kao, Y. C. (2019). Public beliefs and attitudes toward schizophrenia and

-p

ro

depression in Taiwan: A nationwide survey. Psychiatry Res., 273, 435–442.

re

https://doi.org/10.1016/j.psychres.2019.01.062.

lP

Lin M. L. (2001). The experience of living with the stigma of schizophrenics. (Unpublished Master’s thesis.) National Taiwan University, Taipei.

na

Link, B. G., & Phelan, J. (2014). Stigma power. Soc. Science Med., 103, 24–32.

Jo ur

https://doi.org/10.1016/j.socscimed.2013.07.035. Magliano, L., Fiorillo, A., Malangone, C., Del Vecchio, H., & Maj, M. (2008). Views of persons with schizophrenia on their own disorder: An Italian participatory study. Psychiatr. Serv., 59(7), 795–799. https://doi.org/10.1176/appi.ps.59.7.795. Martin, J. K. (2015). The stigma complex. Annu. Rev. Sociol., 41, 87–116. https://doi.org/10.1146/annurev-soc-071312-145702. Pelleboer-Gunnink, H. A., Van Oorsouw, W. M. W. J., Van Weeghel, J., & Embregts, P. J. C. M. (2017). Mainstream health professionals' stigmatising attitudes towards people

Journal Pre-proof

SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

34

with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research, 61(5)411-434·dio: 10.1111/jir.12353. Peng R. B., & Wong S.H. (2018). Coming face-to-face with suffering: Toward a psychopathology for the human-science oriented clinical psychology. Formosa Journal of Mental Health, 31(3), 227–257.

of

Rose D., Thornicroft G., Pinfold V., & Kassam A. (2007). 250 labels used to stigmatise

-p

ro

people with mental illness. BMC Health Serv. Res., 97(7), 1–7.

re

https://doi.org/10.1186/1472-6963-7-97.

lP

Samari, E., Seow, E., Chua, B. Y., Ong, H. L., Abdin, E., Chong, S. A., & Subramaniam, M. (2018). Stigma towards people with mental disorders: Perspectives of nursing students.

na

Arch. Psychiatr. Nurs., 32(6), 802–808. https://doi.org/10.1016/j.apnu.2018.06.003.

Jo ur

Smith, V., Reddy, J., Foster, K., Asbury, E. T., & Brooks, J. (2011). Public perceptions, knowledge and stigma towards people with schizophrenia. J. Public Ment. Health, 10(1), 45–56. https://doi.org/10.1108/17465721111134547. Szeto, A. C. H., Luong, D., & Dobson, K. S. (2013). Does labeling matter? An examination of attitudes and perceptions of labels for mental disorders. Soc. Psychiatry Psychiatr. Epidemiol., 48(4), 659–671. https://doi.org/10.1007/s00127-012-0532-7. Thonon, B., Pletinx, A., Grandjean, A., Billieux, J., & Larøi, F. (2016). The effects of a documentary film about schizophrenia on cognitive, affective and behavioural aspects

Journal Pre-proof

SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

35

of stigmatisation. J. Behav. Ther. Exp. Psychiatry, 50, 196–200. https://doi.org/10.1016/j.jbtep.2015.08.001. Thornicroft, G., Brohan, E., Rose, D., Sartorius, N., & Leese, M. (2009). Global pattern of experienced and anticipated discrimination against people with schizophrenia: A

https://doi.org/10.1016/S0140-6736(08)61817-6.

of

cross-sectional survey. Lancet, 373(9661), 408–415.

ro

Vrbova, K., Prasko, J., Ociskova, M., & Holubova, M. (2017). Comorbidity of schizophrenia

re

-p

and social phobia – impact on quality of life, hope, and personality traits: A cross

lP

sectional study. Neuropsychiatr. Dis. Treat., 13, 2073–2083. https://doi.org/10.2147/NDT.S141749.

na

WHO (2018). https://www.who.int/zh/news-room/fact-sheets/detail/schizophrenia.

Jo ur

Wu, S. M. (1999). The exploration of self-empowerment and influencing factors in adaptation process of schizophrenia. (Unpublished Master’s thesis.) National Taiwan University, Taipei.

Yanos, P. T., Lysaker, P. H., & Roe, D. (2010). Internalized stigma as a barrier to improvement in vocational functioning among people with schizophrenia-spectrum disorders. Psychiatry Res., 178(1), 211–213. https://doi.org/10.1016/j.psychres.2010.01.003. Yu, C. T., Liao, S. C., & Liu, H. Y. (2015). Applying the root cause analysis to reduce the

Journal Pre-proof

SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

36

self-harm behavior in hospitalized psychiatric patients. Formos. J. Med., 19(1), 54–63. https://doi.org/10.6320/FJM.2015.19(1).09. Zhang, L., & Haller, B. (2013). Consuming image: How mass media impact the identity of people with disabilities. Commun. Q., 61(3), 319–334.

Jo ur

na

lP

re

-p

ro

of

https://doi.org/10.1080/01463373.2013.776988.

Journal Pre-proof

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Figure 1: The self-stigmatization process of patients with schizophrenia

37

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SELF-STIGMA OF PATIENTS WITH SCHIZOPHRENIA

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Sex

Age

Marital status

Living with

Occupation

Years of illness

P1

M

43

Single

Family

Unemployed

26

P2

F

38

Single

Family

21

P3

F

45

Single

Alone

Sheltered workshop employee Unemployed

P4

M

43

Single

Family

Unemployed

17

P5

M

52

Single

Family

Ex-serviceman

12

P6

M

37

Single

Family

Unemployed

8

P7

M

49

Single

Alone

Unemployed

22

P8

M

50

Married

Family

Unemployed

33

P9

F

55

Married

Family

Company

10

employee Factory staff

14

Family

Unemployed

10

Family

Unemployed

5

Family

8

24 8

Single

P11

M

49

Single

P12

M

25

Single

P13

M

27

Single

P14

F

62

P15

F

33

-p

47

Family

re

F

lP

P10

ro

No.

of

Table 1: The demographic characteristics of the participants

Relative

Single

Family

Unemployed

Jo ur

na Single

Sheltered workshop employee Unemployed

4

Figure 1