Archives of Psychiatric Nursing 28 (2014) 405–412

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Archives of Psychiatric Nursing journal homepage: www.elsevier.com/locate/apnu

Illness Perception in Turkish Schizophrenia Patients: A Qualitative Explorative Study Perihan Güner ⁎ Mental Health Nursing, Koç University, School of Nursing, Istanbul, Turkey

a b s t r a c t Background: Schizophrenia is a serious mental illness that is highly complex and not fully understood. Individuals with serious mental illnesses like schizophrenia experience difficulty trying to access mental health services. Few have the opportunity to receive the most optimal evidence-based treatment and only half of those who do actually adhere to the recommended treatment. Understanding what it is like to have this illness would help in our approaches to treatment. Methods: In-depth interviews were conducted on nine Turkish patients with schizophrenia in order to explore the illness from the perspective of patients in remission. Results: Five themes emerged from the patients' descriptions of schizophrenia: schizophrenia is a complicated illness, a mystery, a lost life, a dynamic journey towards recovery, and a developmental process of recovery. Conclusion: This study has identified areas of concern about reflecting the patients' perspectives on their experiences thoroughly, which should help improve healthcare provision and guide future research. © 2014 Elsevier Inc. All rights reserved.

Schizophrenia is a complex, multi-dimensional condition that is not yet fully understood and is among the most difficult mental illnesses to treat (Davidson, Schmutte, Dinzeo, & Andres-Hyman, 2008). Approximately one in every 100 people is diagnosed with schizophrenia worldwide (Lobban, Barrowclough, & Jones, 2005); however, when one also includes patients' friends and family members, the number of people who are affected by this illness is much higher. Schizophrenia not only affects an individual's psychological, occupational and social functions (Mwansisya et al., 2013) but also is accompanied by complex disruptions in emotions, thoughts and perceptions (Graor & Knapik, 2013; Phanthunane, Vos, Whiteford, & Bertram, 2010). The literature shows that individuals with serious mental illnesses such as schizophrenia experience difficulty accessing mental health services. Few patients have the opportunity to receive the most optimal levels of evidence-based treatment and only half of those do actually follow the recommended treatment (Davidson et al., 2008). According to a World Health Organization (WHO) report, untreated mental disorders account for 13% of the total burden of disease worldwide and a wide gap remains between the need for mental illness treatment and its provision. For example, between 76 and 85% of people with severe mental illnesses receive no treatment for their mental health problem in low- and middle-income ⁎ Corresponding Author: Perihan Güner, PhD, RN, Mental Health Nursing, Koç University, School of Nursing, Guzelbahce sok., No: 20, 34365 Nisantasi-Istanbul. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.apnu.2014.08.016 0883-9417/© 2014 Elsevier Inc. All rights reserved.

countries, while a high percentage (between 35 and 50%) receive no treatment in high-income countries (World Health Organization, 2011). Schizophrenia is also one of the most financially debilitating illnesses (Phanthunane et al., 2010; Soygür, 2003). When considering only the disability component in the calculation of the burden of disease, mental illnesses account for around 30% of all years lived with a disability (YLD) in low- and middle-income countries (World Health Organization, 2011). In Turkey, among the top 20 causes of YLD, schizophrenia was the ninth leading cause among men and the eleventh among women (Erkoç, Çom, Torunoğlu, Alataş, & Kahiloğullari, 2011). Financing for the treatment and prevention of mental illnesses remain insufficient. Globally, annual spending on mental health is less than 2 USD per person and less than 0.25 USD in low-income countries (World Health Organization, 2011). Studies worldwide have shown a wide variation of annual costs for schizophrenia treatment, but it is difficult to compare data because some studies calculate total annual healthcare spending instead of costs per patient. Furthermore, there are considerable differences in population, which help determine these figures. In Taiwan, the average annual total cost per patient was approximately 16,576 USD (Lee et al., 2008). In Australia, the annual in-patient mental health care costs averaged 13.800 AUD (Carr, Neil, Halpin, Holmes, & Lewin, 2003). In the USA, the average annual total cost per patient was 5984 USD (Desai, Lawson, Barner, & Rascati, 2013). In China, the average annual total cost per patient was 2586.21 USD (Zhai, Guo, Chen, Zhao, & Su, 2013).

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In a study conducted at a Turkish teaching hospital, the annual cost of schizophrenia treatment in 2006 was only 1,760 USD per patient and totaled 616 million USD for all patients diagnosed with schizophrenia (Yıldız & Cerit, 2006). While schizophrenia is one of the leading causes of disease burden and disability, many patients do not receive treatment (Davidson et al., 2008; World Health Organization, 2011). Therefore, minimizing the negative impact of schizophrenia on patients and society is among the priorities of many countries like Turkey (Phanthunane et al., 2010). To this end, a comprehensive report about a new service delivery model was outlined by Turkish mental health authorities. The model focuses on treatment through establishing community-based models of services (Erkoç et al., 2011). This model criticizes that the patients receive no additional care or follow-up from healthcare services once they are discharged and left the hospital-based system. As a consequence, this model claims that it is necessary to give up the hospitalbased model and apply a community-based model instead (Erkoç et al., 2011).While pilot projects for these models have recently been initiated, they have yet to be implemented throughout Turkey. Currently, the Turkish Ministry of Health is preparing a new in-service training program for this new model of service to mental health professionals across Turkey. Learning how patients perceive their illness would be a valuable component to add to this training program, which would help caregivers better understand their patients and provide the opportunity to develop appropriate new treatment approaches and practices. BACKGROUND The concept of illness perception can be broadly defined as the sum of all beliefs related to how a patient conceives and construes his or her illness (Lobban, Barrowclough, & Jones, 2003). It is widely accepted that understanding how patients with physical illnesses perceive their condition will be useful in predicting their coping strategies and health outcomes for those illnesses (Fortune, Smith, & Garvey, 2005; Higbed & Fox, 2010). Today, the researchers are examining how illness is perceived in the field of mental health by taking into account the views and experiences of the patients first-hand (Petrie, Jago, & Devcich, 2007). The most widely studied theoretical illness perception model is the Self-Regulation Model (SRM) developed by Leventhal, Nerenz, and Steele (1984). It is also referred to as the Parallel Processing Model,

Information Processing Model or Common Sense Model (CSM) (Leventhal et al., 1984). According to this model (see Fig. 1), individuals are regarded as actively trying to understand their own symptoms. People's beliefs about their symptoms affect their emotional responses to the illness and how they cope. This is a dynamic process where changes in the knowledge or symptoms of individuals can cause individuals to reevaluate their illness perceptions and as a result, change their coping and support-seeking patterns and emotional reactions (Leventhal et al., 1984; Lobban et al., 2005). The main attributes of the SRM concern the following dimensions of experience: beliefs about symptoms (illness identity), recurrence of the condition (time-line and cyclical time-line), consequences, personal control, treatment control, illness coherence, causes of the condition, and the patient's emotional response to his or her condition (Fortune et al., 2005). The measurement tools [e.g. The Illness Perception Questionnaire (IPQ); Lobban et al., 2005] most widely applied to assess illness perception are based on the SRM of Leventhal et al. (1984). SRM measures have shown how illness perception can have significant value in predicting the variations in coping abilities and health outcomes across a wide range of physical illnesses, which in turn has led to the development of particular interventions that have improved health outcomes (Petrie, Cameron, Ellis, Buick, & Weinman, 2002). These measurement tools are often used to evaluate physical illnesses. However, when used to evaluate mental illness, information relevant to key areas of mental health disorders can be missed (Kinderman, Setzu, Lobban, & Salmon, 2006; Petrie, Broadbent, & Kydd, 2008). For example, beliefs relating to mental illnesses may not be easy to establish because individuals with schizophrenia may change their beliefs depending on being in an acute phase or having distorted thoughts even when stable (Kinderman et al., 2006). Barrowclough, Lobban, Hatton, and Quinn (2001) also found, in regards to schizophrenia, that some beliefs were important in understanding how caregivers adapt to the illness. However, their findings also show the potential difficulties in applying models based on physical illness to mental illness. As a result, while measurements may be conceptually straightforward for physical health, their use is not as appropriate for mental health illnesses. Qualitative research is reported to be a rich source of data related to patient beliefs (Higbed & Fox, 2010); however, there have been few qualitative studies regarding illness perception and schizophrenia. Studies have varied from evaluating disorders other than schizophrenia

Situational Stimuli

The cognitive representation of illness

Emotional response to illness

• Illness identity: Beliefs about symptoms • Recurrence of the condition (time-line and cyclical

• Illness identity: Beliefs about symptoms • Recurrence of the condition (time-line and cyclical

time-nine)

time-nine)

• Consequences • Personal control • Treatment control • Illness coherence • Causes of the condition

Dual Influence

Cognitive Coping

• Consequences • Personal control • Treatment control • Illness coherence • Causes of the condition

Coping with emotional response Dual Influence

Evaluation of objective impact

Evaluation of change in emotions

Fig. 1. Leventhal Self-Regulation Model. Modified from: Jayne & Rankin, 2001; Fortune et al., 2005.

P. Güner / Archives of Psychiatric Nursing 28 (2014) 405–412

to unstable diseases among inpatients. In a study conducted in the UK, Kinderman et al. (2006) interviewed 10 psychotic inpatients and 10 outpatients in remission and conducted qualitative thematic analysis in order to examine the patients' beliefs and experiences about their illness The following themes emerged from this study: the inseparability of illness from patients' identity, the flexibility and uncertainty of beliefs, the social dimensions on illness labels, the separation of current self from past experiences, illness labels, the social and psychological elements of illness labels, and hopelessness and resignation. Liu, Ma, and Zhao (2012) explored the Chinese schizophrenia patients' perceptions on their illness. They interviewed 16 schizophrenia patients with heterogenous demographic backgrounds. The following themes emerged from this study: negative experiences in the past and during the hospitalization process, sense of powerlessness about the patients' selves and future, and an ambivalent therapeutic relationship due to different understandings of mental illness and boundary issues. Shepherd et al. (2012) identified how older adults with schizophrenia perceive changes in their illness experiences over the their lifespan. They interviewed 32 adults 50 years and older, who were diagnosed with schizophrenia. The following themes emerged from this study: for the early course, losses/ upheaval, confusion, escapism; for the middle course, gaining insight, improvement in symptoms, development of self-management skills, adaptations in social relationships; and for the present and future outlook, optimism/hope, acceptance/resignation, despair. The timing of assessing illness is important in both physical and psychological illnesses. One's perception of his or her illness may change over time as the distance from acute episodes increase (Petrie et al., 2008). For example, patients going through an acute psychotic phase (especially those with schizophrenia) may experience too much confusion when responding to questions. It is thus preferable to evoke perceptions of illness when the patient is in remission (Petrie et al., 2008). This study incorporates qualitative methodology in order to gain an understanding of the patient's views and experiences about schizophrenia. It could be debated that quantitative methodological approaches would be unsuccessful in eliciting these kind of data from patients since a qualitative investigation offers the rich narrative of potentially transient thoughts and beliefs about schizophrenia. No qualitative or quantitative Turkish studies on illness perception in patients with schizophrenia have been found. The purpose of this study was to determine the illness perceptions of patients with schizophrenia in remission. METHODS Participants and Setting This study was conducted at two schizophrenia patient associations in Istanbul. Schizophrenia Patient Association I has 520 members with a membership fee of 50 Turkish Liras per month and Association II has 600 members with a membership fee of 30 Turkish Liras per year. In addition to family members, the patients with schizophrenia visit these associations daily. The cost of all services offered by both associations is included in the membership fee. All expenses incurred by both associations are covered by membership fees and donations made by volunteers. Both associations have an active membership of around 30 patients with schizophrenia and their family members. In both associations, patients can come and go as they please during the hours the premises are open. The volunteer healthcare professionals at both associations offer training in psychosocial skills for patients, group therapy sessions for families, and plan activities such as outings to cinemas, etc. at least three times a year. The existing members on the boards of both associations consist of volunteers who are either patients or relatives of patients. The associations for patients with schizophrenia are nongovernmental, grassroots organizations established by patients and their family members. All patients who are diagnosed with schizophrenia in remission and under medication, as well as their family members and health care providers may become a member of these associations.

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Table 1 Semi Structured Form for In-depth Interviews. 1. How would you describe your condition/illness? How do you feel about being schizophrenic? schizophrenia? 2. What can you say about the course of schizophrenia and recovery? 3. What do you think about the treatment of schizophrenia? What can be done? 4. How has it/your illness affected your life? What happened in your life, what has changed?

After becoming a member of the association, if a patient volunteers to give up his or her medication, he/she is no longer able to continue membership. Nine patients (n = 5 from Association I and n = 4 from II) agreed to participate in this study and were selected by purposive sampling. Patients who were at least 18-years old, in remission, active association members, and diagnosed by a psychiatrist using DSM-IV-R criteria were eligible for inclusion. Patients who were unable to answer the questions completely and/or had severe speech and communication impediments were excluded from the study. Prior to the interviews, the ethical committee of a university gave their approval for the study and the two associations gave their written institutional permission. All participants gave their written and verbal consent. In Turkey, it is often the case that family members make decisions on behalf of the patient regarding care and treatment. Participating patients wanted to inform their families. That is why we also acquired the written and verbal consent from their families. Data Collection and Analysis A descriptive exploratory design and in-depth interviews were used in this study. The investigator conducted the interviews between May 8 and June 7, 2012 in a quiet conference room at the association locations. The interviews were guided by a semi-structured questionnaire (see Table 1), took 30 to 60 minutes, were tape-recorded and later transcribed verbatim. In-depth interviews are ideal for eliciting informative personal stories and the perspectives and experiences of individuals, especially when sensitive issues are involved. The conventional content analyses technique (Hsieh & Shannon, 2005, Yıldırım & Şimşek, 2006) was used for encoding data, classifying and identifying themes and the assessment of the findings. The process of content analyses involves gathering similar data under specific themes and concepts, and interpreting these in a manner that the reader can understand (Hsieh & Shannon, 2005). The investigator repeatedly read and analyzed the data in order to identify the underlying themes of illness. The initial codes were categorized into relevant themes and reviewed until it was determined that no other theme applied. Three other nursing faculty members experienced in designing and conducting qualitative research in Turkey carried out content analysis for reliability and validity and also participated in individual in-depth discussions until a consensus was reached. Lastly, the themes and sub-themes were presented to a nursing faculty member specializing in qualitative research for their expert opinion before finalization. RESULTS Table 2 indicates the socio-demographic and disease-related characteristics of the patients. The average age of the nine participants was 41.3 years (range 27 to 54) with eight males. Four patients were university graduates. All participants received welfare assistance and eight lived with at least one family member. Illness duration ranged between 3 and 27 years. Two patients had never been hospitalized for their schizophrenia. Five main themes emerged from content analysis: “schizophrenia is a complicated illness”, “schizophrenia is a mystery”, “schizophrenia is a

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Table 2 Socio-Demographic and Disease-Related Characteristics of the Patients.

Patient no:

Age

Education

Occupation

Who do you live with

Duration of illness/year

The number of hospitalizations

1 2

27 45

High school graduate College dropout

Grandparents Mother/sister

5 26

1 4

3 4 5 6

50 36 43 40

College graduate College graduate High school dropout College graduate

Unemployed Does not have a regular job (5–6 days/months) Retired Does not have a regular job Self-employed Unemployed

20 3 25 14

3 3 4 2

7 8 9

44 54 33

Primary school graduate Secondary school dropout College graduate

Unemployed Retired Unemployed

Alone Father/brother Parents Parents Grandmother Mother/sister Mother/brother Mother

27 24 8

15 None None

lost life”, “schizophrenia is a dynamic journey towards recovery” and “schizophrenia is a process of recovery”. Schizophrenia: A Complicated İllness Schizophrenia described as a complicated illness is one of the most prominent themes that emerged with two sub-themes: “indescribable pain” and “frightening”. “…Everything in this world is unreal. Only schizophrenia is real. Yes, I've lived through some unreal things, but I perceived, even thought of it as real…” (Patient #8).

An Indescribable Pain Some patients stated that schizophrenia was painful enough to cause morbid thoughts making them think only death could put an end to their anguish. Not receiving support during such times exacerbated the pain, a pain more overwhelming than any physical pain, no other pain being comparable. Their illness made some apathetic, sick of living, unable to derive pleasure from anything and led to a type of spiritual congestion that caused great agony. “…When I would occasionally see a hearse, I would feel relief. It will come for me one day and I shall be free of all this misery…” (Patient #3)

Frightening Their experience was described as being so alien, frightening and overwhelming that they could not share these symptoms with other people for fear of scaring them. “…do you know how it feels to have everything you were familiar with become foreign to you within an instant? It was when I became aware of this that I accepted my illness (my diagnosis) I was horrified.” (Patient #3)

Schizophrenia Is a Mystery The second most prominent theme was that schizophrenia is a “mystery”. Most patients stated that it is impossible to explain or define their experience. It was described as a “bizarre”, disturbing illness. The patients stated that they prefer not speaking to anyone who has not lived through the same experience. They are unable to explain their experiences to anyone, including their families and felt that even their doctors and friends did not understand. They also did not understand the causes of schizophrenia and were confused about recovery.

“If insanity could be defined, it would no longer be insanity…” (Patient #3). Not understanding what caused their illness was often expressed by “they say”, e. g. “They say it is genetic”. Others describe the cause as the brain not releasing sufficient dopamine, others attributed the condition to what “they say” may be due to blows to the head and subsequent seizures. Other causes of schizophrenia were given as loneliness, an act of God, poor family relationships, academic failures, economic hardship and/or stress, excessive studying during childhood, not placing importance on one's social life, obsessing about certain things, personality traits (introversion), depressive and oppressive settings, working in difficult jobs, being subjected to ill-treatment, the loss of loved-ones and a combination of these factors. A Lost Life Patients expressed the losses they experienced with schizophrenia by the theme “lost life”. They felt very ill-fated; life had been unbearable and resulted in a very unhappy childhood. Their illness also impacted their social life. Medications made it difficult for them to concentrate or communicate effectively. When heavily medicated, they had difficulty getting out of bed and rarely had a social life. They felt the illness also impacted their “loss of social status”, ranking last socially. They were ‘pushed around’ for being a burden on the state and the nation; carrying considerable anger and hurt because of their illness. All expressed the view that because of the illness, they had no professional, educational and/or married lives and that this illness had taken away “everything”. A Dynamic Journey Towards Recovery The fourth theme that emerged was that it is “a dynamic journey toward recovery” with two sub-themes: “factors facilitating recovery” and “factors hindering recovery”. Patients' views of recovery were varied with expressions such as “there is no recovery”, “if God wants to heal, God will”, “there is no complete recovery”, “you can recover”, “it will subside with age” and “I don't know if you can recover”. Some patients stated that recovery was possible, but that they did not quite understand what this meant. Recovery was defined as the lack of symptoms while others defined it as the ability to get married, work, earn enough money to be self-sufficient and become part of a social circle or community. Factors Facilitating Recovery Factors that “facilitate recovery” were attitudes of family, doctors, drug therapy, the patient himself/herself, a religious cleric and/or “Hodja”, an honorific title for a religious teacher who often advises by ways of prayer.

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Family attitudes played a very important role in recovery. Support was described as not pressuring them, allowing them to undertake responsibilities, and recognizing their right to express their views. All patients recognized that drug therapy was important in order to prevent relapses and understood the importance of drug adherence and regular doctor visits. The demeanor of doctors was described as equally as important to their recovery as the medications. They felt physicians could play a greater role in educating their families about the illness and how to relate to them. They also wanted doctors to be polite and take the time to listen to their concerns. “Sometimes your family doesn't understand you, thinks you're being lazy. It's an invisible illness; the physician needs to explain to the family the seriousness of the situation a bit…” (Patient #5) Patients understand that they have significant responsibility for their own recovery and felt they needed to understand their own illness and regulate their lives, refraining from doing things that might adversely affect their condition. Several patients referred to the need to keep themselves constantly active, acquire hobbies, explore their inner talents and make sure that each day is spent with purpose. They explained that doing nothing would create a sense of emptiness that could result in a relapse. While some felt that visiting a Hodja would have no impact on recovery, others believed it may be beneficial. Many patients stated that praying to God was quite healing to them. One said that they would get better only if God wants them to. “…I believe in prayer. I ask God for certain things, I believe. It's very comforting. I trust Him”. (Patient #5)

Factors That Hinder Recovery Family attitudes, stigmatization, fear of being deprived of certain rights, the quality of healthcare and financial/social security issues were identified as factors that may hinder recovery. Some felt their families were over-protective. They had difficulty understanding the inconsistent responses from their families. “…like, they play it both ways… For example, if I comment on the family finances or come up with an idea and it doesn't suit them, they say you're sick, don't interfere. And sometimes, they say the opposite, they say go out and work you're in perfect health”. (Patient #5) They all felt stigmatized and were uncomfortable with and offended by the ridicule, humiliation, indignity and discrimination they were subjected to and felt ashamed of their illness. Some stated that they could not reveal their illness to new friends because of prior experience with alienation. They felt they can only associate with people who are not aware of their diagnosis. They lived in “fear of being deprived of certain rights” resulting in one patient saying they did not want to recover for fear of losing the welfare payments from the state and ending up abandoned and alone. They felt that a change in the perceptions of schizophrenia in the community and media would allow patients to find employment, earn a living, have social lives and ultimately lead to the resolution of many of their problems. However, some felt uneasy if the community saw them as “normal people” and as such, set certain expectations. The quality of healthcare was not considered optimal. Almost all patients expressed dissatisfaction with the healthcare they were receiving. This was reflected in comments regarding lack of continuity in care and limited time for visits except for distribution of drugs “…it's a different doctor each time I go to hospital, just 10 minutes of time…I mean it's just not relevant that it's a huge hospital or that there is a huge variety of medications…” (Patient #2). Their views were often dismissed by doctors. “I was trying to hospitalize my younger sister/brother by

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myself…He (the doctor) said are there any other sick people in the family. I said yes. When I said I am one of them, the man hesitated for a moment. In that case I have to talk to his/her fiancé. Even the doctor felt the need to consult with another person even if he didn't totally disregard my statements…” (Patient #3) Many patients suffered economic hardship without a doctor's report that they have an 80% disability, which is the minimum requirement for government welfare. A few offered they could not work 8 to10 hours a day and that flexible employment opportunities would help. Most indicated a desire to work, be productive and to have access to health insurance and welfare benefits. “…You have a condition and you can't work full-time, but the government sees you as being healthy because you haven't lost a limb or an organ and can't give you welfare payments…” (Patient #4) A Process of Recovery The process of recovery is the final theme. This theme represents the positive aspects about their feelings of living with schizophrenia. The four sub-themes consisted of changes in perceptions of schizophrenia, learning to live with illness, positive temperament changes and deriving meaning from illness. Changes in Perceptions of Schizophrenia Some patients indicated that while all chronic illnesses are challenging, they had come to prefer schizophrenia over other conditions and are no longer frightened by it. Virtually all indicated that they used to view people with other illnesses as being happier, but now viewed schizophrenia as less serious and easier to live with. “…before I got sick, the word schizophrenia was scary to me…After getting sick and becoming familiar with how things are, I realized it's nothing like what I had feared…” (Patient #4)

Learning to Live With Illness They tried to live with their condition and find peace. One said they did not know what normality was but were happy with their condition and did not want to make any changes. “I take my medication mornings and nights for example, I couldn't do that before…I know I have to live without straining my body too much…” (Patient #4)

Positive Temperament Changes Those more at peace with themselves and who felt less frustrated tried to establish positive dialogue with others. One said they had grown calmer, another commented that despite having harbored pride, arrogance, malevolence and hatred in the past, they have matured since the onset of their illness. Deriving Meaning From Illness One commented that he/she believed schizophrenia protected him/ her from other negative things and that had it not been for schizophrenia, he/she may have missed out on some positive life experiences. “… If I weren't ill, would I have been an alcoholic instead, would I have been a gambling addict or have a different character or maybe I don't know I might have had a dysfunctional marriage, I might have been harmful to others. I might have had a different ailment…” (Patient #5)

DISCUSSION Until now, the researchers have focused on the schizophrenia patients' beliefs in their attempts to identify their illness perceptions by

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using the approaches developed for physical illnesses. The results of this study present an opportunity to develop a detailed understanding of the schizophrenia patients' subjective perceptions regarding their illness experiences. While the results of this study are consistent with those of previous studies in the finding that the patients with psychiatric problems have difficulty conceptualizing their illness (Higbed & Fox, 2010, Holzinger, Kilian, Lindenbach, Petscheleit, & Angermeyer, 2003, Kinderman et al., 2006, Williams & Healy, 2001), the participants of the current study were able to reveal/express their thoughts about the nature of their psychotic experiences. The results of data analysis indicate that if not all, at least some of the SRM illness representation components are applicable to schizophrenia patients. Accordingly, most patients either had no understanding of or were unsure about what the course of the illness or recovery include. However, some patients were aware that schizophrenia is a chronic illness and that recovery is possible. All patients were aware that they were ill and were disabled due to their illness. The patients were quite cognizant of the consequences of their condition, especially with regards to how it affects their lives. They were able to define their symptoms, and in particular, could express how disturbed they became by the hallucinations and delusions. The patients had learned how to cope with their illness and its symptoms. The participants were not able to understand that their illness symptoms are, in fact, unreal. The patients tried to make sense of their illness under very challenging circumstances. Only when patients had achieved a certain level of wellness were they able to have a better understanding of their symptoms and illness. The themes emerging from this study reflected many issues patients face. Patients were quite comfortable using the term “schizophrenia” and were aware that their symptoms were due to the illness, but found the illness very challenging. Similar to a study of young adult patients with schizophrenia that “embodied temporality: illness as a catastrophic experience” (McCann & Litt, 2004), our patients described schizophrenia as being an indescribable illness (schizophrenia: a complicated illness) that causes emotional pain severe enough to prompt thoughts of death. This causes a feeling of isolation because they cannot share their feelings readily with others. This finding is significant because it highlights the need of healthcare personnel to determine and help patients develop a support system. One of the characteristics of schizophrenia is that individuals cannot understand what is happening to them at the onset of their illness. As a result, patients do not feel the need to label symptoms such as hallucinations and delusions because they perceive such symptoms as being real at the time they occur. Patients with schizophrenia are unable to differentiate between reality and psychotic symptoms until they recover (Allen et al., 2004). Patients did not have a good understanding (schizophrenia is a mystery) of the causes of schizophrenia and speculated on numerous reasons. Holzinger et al. (2003) reported that patients with schizophrenia and their relatives most commonly attribute schizophrenia to psychosocial stress because it is a meaningful explanation. The patient's understanding of the cause of schizophrenia may be influenced by culture. Furnham and Wong (2007) reported that while the Chinese mainly adhered to superstitious and religious explanations for the causation (and cure) of schizophrenia, the British mostly referred to internal (biological and psychological) factors and external (social) factors, similar to Turkish patients. Consequently, the cause and treatment described by patients reflected biological treatment, psychotherapy and community treatment programs. It was not very surprising to find that some patients indicated it was “God's will”. Many people in Turkey, particularly those who are more religious, believe that all illnesses are caused by God. The enormous impact of schizophrenia was reflected in the theme, a lost life. Schizophrenia had a very destructive effect on the lives of the patients, to the point where they felt a loss of their entire lives as they had previously known it. They described that their lives passed by without having lived and there was nothing in their lives but schizophrenia. This resulted in hurtful feelings and exasperation. These findings

support the widely accepted notion that schizophrenia is one of the illnesses that most negatively affects individuals. The recovery period varies among patients hence the theme, a dynamic journey toward recovery. Some defined recovery as the cessation of symptoms and the disappearance of all negative consequences of the illness (e.g. “I can't work, but people who can work and earn money are normal” or “In order to have recovered, you have to be symptom-free”). Balaji et al. (2012) reported on patients with schizophrenia and their caregivers. Both groups described the desire for symptom control, employment/education, social functioning, ability to be free of duties and responsibilities, independent functioning, cognitive efficiency and drug-free management. During their symptom-free periods, patients found it difficult to accept that they had an on-going illness (Petrie et al., 2008). Given the variety of outcomes identified by these patients and caregivers, it is no surprise that patients' definitions of recovery were so diverse. It is also widely accepted that in both developing and developed countries individuals with psychological problems experience difficulty accessing mental health services and very few patients received appropriate treatment (Davidson et al., 2008). In Turkey, families must assume responsibility for patients, because the availability of healthcare services for patients following discharge from hospital is very limited. Almost all patients with schizophrenia in Turkey live with their families and women assume the role of caregiver. However, without the support of the healthcare system, caring for these patients can be a burden on the family. Resources to treat schizophrenia should also consider family support and education. Many caregivers often experience a great amount of stress, depression, and anxiety in addition to a strain on personal, financial, and emotional resources especially within the first year (Chan, 2011). A key finding in a study evaluating caregivers' burden in Nigeria (Lasebikan & Ayinde, 2013) showed that 85.3% of caregivers of patients with schizophrenia experienced at least some amount of objective burden. The results of another study examining family burden in a medium-income country in South America showed that all caregivers showed a very high degree of burden: especially mothers, those who were older, those with low educational levels, those who were unemployed, and those who were taking care of younger patients (CaqueoUrizar & Gutierrez-Maldonado, 2006). The quality of the patient/clinician relationship is an important determinant of patient attitudes and adherence to drug therapy (Day et al., 2005). Patients found very little support from healthcare personnel; however, patient associations (administered by nonmedical personnel) provided more information to patients about the illness than healthcare personnel. Consequently, patients are more likely to express whatever the larger community conceptualizes about schizophrenia. It is unclear if this response is unique to this group who may receive support from their association or if this is a common sentiment among patients. A strong, well-informed patient association plays a key supportive and educational role for patients. Therefore, there is a compelling need to address this issue in the new model of healthcare in Turkey. Stigma is a commonly experienced by patients with schizophrenia and can negatively impact recovery. In a study by Lv, Wolf, and Wang (2012), close to 70% of the 95 patients with schizophrenia reported mild to moderate levels of self-stigma. Participants in this study also indicated discomfort with negative labels and by other societal views suggesting they are “normal and healthy” people who should work and be productive. Patients repeatedly voiced that they attach a substantial amount of importance to economic means and that with an income almost all of their problems would be solved. Barriers to achieving this independence are limitations in welfare benefits from the diagnosis and difficulty sustaining focus for long periods of time. These findings suggest a need to re-evaluate the system of compensation for these patients and work with employees to determine how accommodations can be made with working hours. These patients commented on the importance of their own role in their recovery (a process of recovery). Despite the negative aspects of

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their illness, they can also see some positive outcomes. Given the challenges of this group, such a reaction is surprising, but might be explained as a protective response to life challenges. Individuals have an innate capacity to find meaning out of their experiences. The positive life-style changes made by patients in order to remain healthy may be associated with the rethinking of healthy living issues that emerge following the illness. Negative experiences started to give meaning to the individual and likely influenced the recovery themes that emerged. Smith (2000) found that accepting the disability, believing in recovery, keeping symptoms under control, self-care, remaining active and educating oneself were strategies developed by patients to maintain their recovery status. Limitations This type of study was conducted for the first time in Turkey, thus it has limitations: first, the small sample of this qualitative study cannot be generalized; however, the findings about the patients' perceptions of their schizophrenia, which were obtained through in-depth interviews with the patients themselves, can provide a useful framework for the nurses and other mental health personnel who work with these patients. Secondly, aside from one female patient, the study population consisted of males. For this reason, the responses do not adequately reflect the experiences of female patients with schizophrenia. Thirdly, the study population consisted of patients who were members of schizophrenia patient associations. This group may have been more motivated to maintain wellness and be better informed about their illness than non-attendees. Fourthly, this study is conducted only with the patients who are in the remission stage. Finally, this study is conducted merely in Istanbul, which is the most populous city in Turkey. Recommendations for Future Research In accord with the limitations stated in the last section, we recommend that this type of studies should be conducted with different groups of schizophrenic patients so that the data's reliability will increase and the findings will become more generalizable. Similar qualitative studies carried out with different patients' groups in different institutions and smaller cities will provide further comprehensive data, which can be used as a database for the preparations of the mediums of measurement to be used in a quantitative research with a much larger sample. Since this study included only one female patient, new studies conducted with more females can provide new findings on how schizophrenia is perceived from the female perspective. We also suggest that further studies, which focus on the patients who are in different stages of the illness in order to reflect the perspective of all patients at all stages, are needed. Similar studies can be conducted with the patients' families and mental healthcare providers, and comprehensive data can be obtained about how these people perceive schizophrenia. Additionally, new studies can be conducted with the patients who live in places where there are no rehabilitation centers or patient associations, and who do not want to participate in such groups even though they exist locally. Further studies can be conducted with the patients who live in smaller cities and can highlight any similarities and differences with the findings of this study. CONCLUSIONS Patients with schizophrenia expressed several views of their illness; it is complicated, they were not understood by anyone (including healthcare providers), and they felt isolated. Schizophrenia had a major impact on every aspect of their life yet most of their healthcare information was limited and received from individuals with non-medical backgrounds. Families and doctors were not usually viewed as

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supportive or helpful. Family attitudes, stigmatization, fear of being deprived of certain rights, and the quality of healthcare and financial/social security issues were identified as factors that may hinder recovery. Factors that facilitate recovery were family attitudes, doctors, drug therapy, the patient himself/herself, and a religious cleric and/or “Hodja”, an honorific title for a religious teacher who often advises by ways of prayer. Findings have implications for education and clinical practice. The literature showed that the opinions and contributions of all patients and caregivers are an important measure of quality. Mental health nurses and other mental health personnel must work well together with patients, understanding their needs and expectations clearly (Playle & Bee, 2009). When preparing education programs, the data obtained through the patients' perspective can be integrated into the programs so that nurses and mental health personnel are better prepared to work with schizophrenic patients. In clinical practice, the patient will receive holistic and thorough care since the data obtained by the patients and family members will be integrated into clinical practice. Furthermore, mental health personnel can have a better understanding of patients with schizophrenia using these data, since schizophrenia is an illness that is not thoroughly understood even by mental health personnel. Caregivers can be more helpful to the patients and their families using the right approaches. The findings of this study can help health care personnel create programs for educating society about schizophrenia, guide the patients and their families towards the existing social resources and find new resources to increase the patients' socialization and job opportunities. Moreover, mental healthcare personnel can benefit from these findings in order to explain the patients' social rights, demands, and expectations and what can be done to the government and policy makers. Finally, the patients stated that they learned to live with their illness and that the way they see this illness has changed. Mental health personnel can further support this attitude in patients and help them by finding and developing new methods for patients to cope with their illnesses in a better way. CONFLICT OF INTEREST The author declare that they have no conflict of interests. SOURCE OF FUNDING This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Acknowledgment Kind thanks go to Suzanne C Lareau, RN, MS, FAAN for reviewing this work more than once and giving such insightful feedback as well as editing. The author would like to heartily appreciate the helpful comments of Professor Kathy Magilvy. The author also would like to thank each and every one of the patients who made invaluable contributions to this study. References Allen, P. P., Johns, L. C., Fu, C. H., Broome, M. R., Vythelingum, G. N., & McGuire, P. K. (2004). Misattribution of external speech in patients with hallucinations and delusions. Schizophrenia Research, 69(2–3), 277–287. Balaji, M., Chatterjee, S., Brennan, B., Rangaswamy, T., Thornicroft, G., & Patel, V. (2012). Outcomes that matter: A qualitative study with persons with schizophrenia and their primary caregivers in India. Asian Journal of Psychiatry, 5(3), 258–265. Barrowclough, C., Lobban, F., Hatton, C., & Quinn, J. (2001). Investigation of models of illness in carers of schizophrenia patients using the Illness Perception Questionnaire. British Journal of Clinical Psychology, 40(Pt 4), 371–385. Caqueo-Urizar, A., & Gutierrez-Maldonado, J. (2006). Burden of care in families of patients with schizophrenia. Quality of Life Research, 15(4), 719–724. Carr, V. J., Neil, A. L., Halpin, S. A., Holmes, S., & Lewin, T. J. (2003). Costs of schizophrenia and other psychoses in urban Australia: Findings from the Low Prevalence (Psychotic) Disorders Study. Australian & New Zealand Journal of Psychiatry, 37(1), 31–40. Chan, S. W. (2011). Global perspective of burden of family caregivers for persons with schizophrenia. Archives of Psychiatric Nursing, 25(5), 339–349.

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