Family Achievements in the Battle with Schizophrenia: :Life Experiences in a Qualitative Content Analysis Study in IRAN

Introduction: The challenges of living with and taking care of a patient with schizophrenia can lead to positive changes depending on the experiences and reactions of the families. Such changes may directly affect the family performance and the patient's recovery stage. Therefore, the aim of this study was to explain the positive experiences reported by families of patients with schizophrenia. Materials and methods: In this qualitative study of content analysis, data were collected using semi-structured and in-depth interviews with 15 family members of patients with schizophrenia who referred to one of the psychiatric hospitals in Zahedan City, Iran. Targeted sampling method was applied and data analysis was conducted using contractual content analysis proposed by Graneheim and Lundman. Results: Data analysis resulted in a theme entitled 'family achievements in the battle with schizophrenia'. This theme included four main categories of: Developing positive personality traits in family members, Strengthening family ties, Developing insight into life, and Social mobility. Conclusion: The ndings provided evidences that the experience of taking care of patients with schizophrenia led to positive consequences for the families.


Introduction
Schizophrenia is one of the most chronic and debilitating psychiatric disorders (1) with a prevalence of 1.4-4.6 per 1000 persons (2). Early onset of the disease, long term persistence of the symptoms, and recurrence of the disease cause economic, social, and individual problems. As a result, high therapeutic and non-therapeutic costs are imposed on the family and community, such as losing job due to illness or taking care of the loved ones (3,4). The burden of this disorder has been ranked 11th among 301 diseases and injuries (5,6,7). Families with a schizophrenic patient experience grief and are forced to deal with social stigma and isolation, which lead to feelings of shame or guilt and affect their physical and mental health (8). Although most consequences of caring for a patient with schizophrenia are negative, some caregivers have identi ed more positive and bene cial aspects of this role in recent years (9,10). Although little research has been carried out in this area, the evidences show that caring for others can result in positive changes in one's life. Other diagnostic changes can have a positive effect on family members, such as improving the family dynamics, having more social support, and having a job outdoors (for both the patient and the caregiver) (11,12). Positive family characteristics such as warmth and cohesion may have a protective effect that helps improving the symptoms of schizophrenia (13). In a study conducted by Chen and Greenberg (2004), approximately 70% of the caregivers reported that they became more sensitive towards people with disabilities and 50% felt more empowered internally (14). Pickett et al. reported that parents' positive assessments of their relationship with the sick child were signi cantly associated with reduced caregiver burden (15).
Evaluation of the disease consequences depends on the experiences and reactions of the families and patients, which may directly affect the family performance and the patient's recovery stage (16,17).
Studies also show that family constructs may vary within different cultural contexts. For example, Weisman et al. (2016) mentioned that high levels of family cohesion were signi cantly associated with lower anxiety levels in patients with African-American schizophrenia (18). A research also indicated that Latin American families were very successful in accepting the patient's current disabilities and maintaining hope for the future (3). Iran still has a traditional family structure and people with schizophrenia are mostly cared for by their families. In Iranian culture, family ties are important factors in everyday life. The whole family manages its problems and reduces the burden of care (19). Despite positive aspects of family care, no study has ever assessed the positive aspects of caring for patients with mental disorders in Iran. The treatment and care team should understand the importance of this issue in providing appropriate care to patients. In other words, these positive family changes can be used to improve medical treatment decisions that enhance the patient's outcomes. As a result, family experiences should be evaluated comprehensively and deeply. Family members' experiences can provide the researchers with information about their unique situation and enhance their performance in patient care (20). Such experiences can be determined through effective communication and in-depth interviews.
Considering the paucity of information about experiences of families with schizophrenia patients, we decided to investigate this issue considering the cultural, religious, and social aspects of the Iranian families.

Study design
This qualitative study was conducted using a contractual content analysis method. This systematic method is applied to describe a phenomenon deeply and extract hidden information of the text to determine its patterns and communication processes (21).

Setting
This research was carried out in Zahedan metropolis, the capital of Sistan and Baluchestan province, which is located in the southeastern part of Iran. The people of this city are of Baloch and Sistani ethnicity. The Baluch speak Balochi dialect and follow Islam and Sunni religion. Sistanis speak a dialect of Persian and follow Islam and Shia religion. Each of these tribes has special culture and customs that are evident in their lifestyle. The present study was conducted from August 2019 to February 2020.

Participants
Initially, purposeful sampling method was applied. Later, theoretical sampling method was performed to select participants with maximum diversity regarding social level, level of education, ethnicity, and economic status. The sampling was conducted in Baharan Educational Psychiatric Hospital in Zahedan City, which is the only psychiatric hospital in this city with 100 active beds. The researcher referred to the inpatient medical records unit in different wards of the hospital, collected the patients' telephone number and address registered in the records, and made the necessary arrangements for the interviews. Participants included family members of patients with schizophrenia, who met the following criteria: having a family member with schizophrenia (diagnosed by a psychiatrist), 18 years of age and higher (22), and favorable physical and mental conditions, living with and taking care of the patient directly for the last year, passing at least one year from the diagnosis of schizophrenia (23), as well as having the ability to understand and speak Persian or Persian dialects -Baluchi and Sistani. Sampling continued until information saturation was reached and no new conceptual information was obtained (24).

Data collection
Data were collected using in-depth, face-to-face, and semi-structured interviews. Initially, the researcher contacted each participant and scheduled an agreed-upon date and time to conduct the interview, in the case that they met the inclusion criteria and had consent to participate in the research. All eligible participants were willing to cooperate in the study. To conduct the interviews, a list of some helpful questions was prepared according to the study purpose. During the interviews, some questions were also added to the list according to the obtained data. The interview questions were mainly about the people's positive experiences in living and taking care of the patient with schizophrenia. Some of the interview questions included: 1) Please tell us about your experiences of living with a schizophrenic patient. 2) What factors helped you to endure these conditions? 3) What positive changes have been made in your life as a result of living with a schizophrenic patient? The subsequent follow-up questions were gradually raised based on the information provided by the participants in order to clarify the concepts. To achieve deeper information, in-depth questions, such as 'What do you mean?' or "Please explain more' were used. A large percentage of the data was repeated after the seventh interview and data saturation was met in the thirteenth interview, but the interviews were continued up to 15 for reassurance. According to the participants' preference, the interviews were conducted in the psychologist's room in Baharan Hospital, which provided a quiet room. The interviews were performed in Persian (N=7) and Balochi dialect (N=9). All Balochi interviews were conducted and translated into Persian before data analysis by F. D (the rst author). The interviews lasted 45-90 minutes.
All interviews were recorded with the consent of the participants. The recorded les were transcribed verbatim; even the participants' nonverbal gestures and body movements were mentioned in the transcriptions. The interviews' process was evaluated by the second and third researchers, who are experts in the qualitative research. In addition to the interview, data-source triangulation was carried out during the data collection process.

Data analysis
Data collection and analytical content analysis were performed simultaneously. After transcribing all interviews, the MAXQDA software version 18 was run to facilitate organization and comparison of the data.
The transcription of each interview was reviewed several times. The qualitative data content analysis process was performed according to the method proposed by Graneheim and Lundman, including writing the entire interview, reading the entire text of interviews several times to achieve a general understanding of its content and immersion in the data, determining semantic units and summarizing them, extracting the primary codes, classifying the similar primary codes under the same subcategories, classifying similar codes under more comprehensive categories, extracting hidden and obvious concepts from the data, and formulating the nal themes (21). To this end, after preparing the transcriptions, each text was reviewed several times. Later, the semantic units were identi ed according to the research questions and appropriate codes were written for each semantic unit. The preliminary codes were categorized and labeled based on their conceptual similarity (subcategories). The subcategories were compared and placed under the main categories, which were more abstract (categories). The main categories were categorized under a more abstract concept (theme).
All extracted codes and categories were reviewed and approved by the second and fth authors of this study. The initial extracted codes were reduced by continuous data analysis and comparison; nally, the categories and subcategories were abstracted.

Trustworthiness
Lincoln and Guba criteria (credibility, dependability, con rmability, and transferability) were used to ensure rigor in the results (25). In order to ensure the ndings' credibility, participants were asked to con rm the extracted codes from the interview and resolve the contents on demand (member check). In addition to interviews, data-source triangulation was carried out to collect data. Regarding con rmability of the ndings, all texts of the interviews, codes, and categories were reviewed and con rmed by the second, third, and fth authors of this study (peer check) as well as a faculty member outside the research area (faculty check). To ensure dependability of the results, all stages of the research were recorded. Participants were selected by maximum variation sampling in terms of ethnicity, level of education, religion, economic status, relation to the patient, and social class, which enhanced transferability of the study.

Ethical considerations
The Ethics Committee of Kermanshah University of Medical Sciences approved this study with the code of IR.KMU.REC.1398.222.
To conduct this study, the participants were initially provided with some explanations about the study goals and processes. They were also asked to sign informed consent forms before entering the research.
The place, time, and duration of the interviews were selected based on the participants' preferences. Prior to the interviews, participants' consent was obtained to record their interviews and take notes from them.
Participants were ensured about con dentiality of all personal information. They were explained that all audio les were stored securely on password-protected servers by the rst author and were deleted after the nal report. Participants could withdraw at any stage of the study.

Results
A total of 15 interviews were conducted with the family members of schizophrenic patients about the positive consequences of schizophrenia for the family. Data analysis resulted in a theme entitled 'family achievements in the battle with schizophrenia', which included four categories and 17 subcategories: Developing positive personality traits in family members (easier expression of emotions, stronger in the face of life problems, greater intellectual development than peers, patience, enhanced communication skills, faster achievement of independence, and increased ability to understand others); Strengthening family ties (increasing dependence and affection among family members, family members' empathetic participation in patient care, and increasing support among family members); Developing insight into life (understanding the importance of mental health, changing mindset from comfort to peace in life, feeling the presence of a superior power in life); and Social mobility (a ip to change lifestyles, acquisition and enhancement of capabilities, economic dynamism, and dynamism in social services) ( Table 3).

Developing positive personality traits in family members
Based on the ndings, living with and caring for a patient with schizophrenia caused signi cant changes in people's daily lives. Adaptation to these changes resulted in the development of positive personality traits in people who were living with these patients. According to the participants' experiences, seven subcategories were obtained with regard to the development and growth of positive personality traits in the patient's family members.

Easier expression of emotions
Based on the participants' experiences, challenges of living with a patient with schizophrenia caused them to show their emotions (e.g., happiness or sadness) more openly and to react emotionally to small events. Their feeling of compassion for the patient led them to show this feeling to others.
"My heart goes out to my mother. Because of her illness, I becameso empathetic to others. I have suffered so much that I become happy with good news. I think I am much more compassionate than before; watching a sad a movie makes me move to tears". (Participant 13) In fact, the illness caused the family members to become more sensitive to life events and to react to small changes: "My sister's illness has made it much easier for me to express my feelings than before. For example, if one of my stuttering students talks in full sentences without stutters, I will be so much happy and excited, so that even his mother will not show that much excitement." (Participation 6)

Stronger in the face of life problems
The problems raised by living with a schizophrenic patient strengthened the family members' sense of self-con dence. They believed that these di culties made them stronger, so that they could handle other problems in life.
"Those hard days made me strong and impassive. Just like iron, I became slaked and stronger in the face of these problems. When I encounter a problem, I say it is nothing compared to those hard days". (Participant 15) In fact, illness of a family member, such as a spouse, required the caregivers to carry the burden of life by accepting new roles and tasks. They experienced new situations throughout the care path, which made them more prepared for the future events.
"When my husband got nervous disease, I had to manage my children, so that I would not need anyone. So, I became like a solid rock of adamant and did not give up". (Participant 2)

Greater intellectual development than peers
Children of patients with schizophrenia were among those whose lives were severely affected by the disease. Children of a parent with schizophrenia are affected by the disease, so that their needs are not met appropriately. Based on the children's gender, some roles may be assigned to them, which enable them to reach intellectual maturity earlier than their peers.
"When I compare myself to my peers, I see that I am much more mature with regard to the surrounding issues. Sometimes, my friends tell me: 'you are very wise and understand more than your age." (Participant 11) "In other words, my mother's disease helped my mind grow faster; that is, I became more mature". (Participant 12)

Patience
One of the positive aspects of having a family member with schizophrenia was increase of patience. In such families, patience resulted from caring for the patient is expanded through the life. A participant stated that she became much more patient in social interactions than the past and could tolerate inappropriate behavior of others much easier.
"I became much more patient than before; struggling with Muhammad increased our endurance and patience more than before. I realized that my patience had increased in dealing with others." (Participant 5) Participants noted that this patience was a reward from God. It was even to their own surprise that they had achieved such strength and endurance, as the result of peaceful behavior with the patient. "God has given me a patience; in my family, I am famous for being patient. Sometimes, I wonder how much patience I have. In dealing with my husband's behaviors, I learned that I should be silent when he is angry ... this increased my patience." (Participant 10)

Enhanced communication skills
The development of communication skills was one of the family's achievements in living with schizophrenic patients, which was noted by participants, especially female caregivers. The illness of a family member, especially the spouse and father of the family, resulted in the loss or decrease of income. So, other family members, such as the patient's spouse, were required to work outside the home in order to pay for the expenses. Such activities outside the home provided the opportunity for individuals to interact with many people from different social backgrounds and strengthened their communication skills.
"Since my husband's illness, I have been working in different people's homes; for example, one was a doctor and one was a businessman. Every family was different and commuting to their homes helped me to learn how to speak well and communicate easily with others. As a result, I do not feel nervous while talking to others anymore." (Participant 2)

Faster achievement of independence
Children of a parent with schizophrenia had to participate in household chores; they even needed to cooperate in caring for the patient. Such early cooperation and tasks allowed the children to achieve independence sooner than their peers and strengthened their sense of responsibility.
"I stood on my own two feet much earlier than my friends and became independent ... I kept the wolf from the door so that I do not put my burden on my siblings' shoulder. In other words, my mother's illness made me grow up. My life's route was so that I had to grow up and become independent very quickly." (Participant 13)

Increased ability to understand others
Incidence of the disease in a family exposed the family members to the judgments of others. Lack of understanding by others caused feelings such as sadness, embarrassment, and stigma in family members. Experience of these negative feelings caused the patient's family members to try to understand others in similar situations and avoid misjudgments because they have already been victims of negative perceptions of others.
"This disease has taught me never to judge others and their lives or to make fun of anyone. This reminds me of my life, I know that judging and making fun of others can have harmful and negative consequences." (Participant 1)

Strengthening family ties
This category showed that when one family member had schizophrenia, the other family members were involved in caring for the patient to relieve the burden. As a result of this cooperation, the family ties strengthened among the family members.

Increasing dependence and affection among family members
The reaction of family members to illness of a family member strengthened their love to each other. In this study, the father of a patient was stricken with a severe heart attack when his son was hospitalized in a psychiatric hospital. The presence of a disease in the family made the family members to realize how much they loved each other.
"Now, I understand how much my husband loves our children. When one of our children was hospitalized, my husband had a stroke and was hospitalized too ... Due to this, I am more interested in my husband than before; I think we are closer than before". (Participant 7) Members of the patient's family considered the illness as a common pain, which required empathy between family members, a feeling that brought family members closer together, and increased love between them.
"My son's illness has brought me and my husband closer. This pain has made us more dependent on each other to take care of our son ... Now my son's condition is such that we need to be more empathetic, and that is what happened." (Participant 9)

Family members' empathetic participation in patient care
The disability caused by schizophrenia may be so severe that the patient may not be able to perform personal daily tasks and hygiene self-care such as bathing, dressing, and eating, and need the help of others. When family members were aware of the patient's disabilities and knew that no one could take care of the patient alone, they felt obligated to participate in housework and patient care.
"Since Zahra has been ill, my husband cooperates in housework more ... For example, when my husband gets up early in the morning to go to work, gives Zahra her breakfast. He also helps me in giving her medications, taking her to the doctor. Now, we are taking care of Zahra together". (Participant 8) Participation in patient care was not limited to family members inside the house, but children who were married and lived separately cooperated with the family to reduce the stress and burden.
"My brother and sister are married and do not live with us, but they still help us in taking care of my sister; they take her to the doctor, hospitalize her, and even pay for her hospitalization. They visit and help us more since my sister has been ill." (Participant 6)

Increasing support among family members
Due to the lack of social support resources in Iran, families of patients with schizophrenia experience severe nancial, emotional, and psychological stress. Experiences of families in this study showed that in such situations, family members provided the role of nancial, emotional, and psychological support for the caregiver.
"Since my husband got sick, my children supported me so much. With their support, I was able to go to the university and get two bachelor's degrees; my children helped me a lot ... my family also supported me and my children more than before." (Participant 10) In fact, the family members' support of a caregiver parent helped them to adapt to the changes caused by schizophrenia.
"My children are very attentive to me, even my older children support their younger siblings more than before. My children's support made me able to cope with my wife's illness." (Participant 14)

Developing insight into life
Based on the participants' experiences, living with schizophrenia patients developed their insight into life. As a result of the illness, they tried to change their attitude and thinking in life and paid attention to what they had neglected before the illness.

Understanding the importance of mental health
The experience of families living with schizophrenics made them realize the importance of mental health in life and worry about their health. One of the causes of distress among caregivers was about their own quali cations to help the patient.
"Since my brother became ill, I feared developing the disease. I was obsessed with it for a while, so I went to a psychiatrist and now I am under surveillance. Because I know if I get sick, there is no one to take care of my brother; so, I consider my health." (Participant 3) The positive and negative symptoms of schizophrenia patients and their destructive behaviors had destructive effects on the patient and caregivers. So, the participants tried to avoid the things that may harm their mental health, such as getting upset and nervous. They avoided trivial issues and considered their own mental health as one of the most important aspects of health that should be protected.

Changing mindset from comfort to peace in life
Loss of family peace due to stressful factors caused by schizophrenia helped the participants to conclude that having peace in life was much more valuable than gaining wealth, facilities, and money. They believed that comfort was effective under the shadow of peace.
"Even though I am old, the disease has changed my mindset. Previously I wanted my children to have good jobs and good incomes; that is to say, I was worried about their comfort. Now, I believe that peace in life is much more important than money." (Participant 9) Participants stated that the presence of this disease changed their attitude towards the life events; so, they tried to take the life easier.
"Now, I try to take the events easy, I think they are not worth being upset, I should not grieve for them and ruin my life, I can handle them." (Participant 12)

Feeling the presence of a superior power in life
Spirituality and closeness to God were among the other positive experiences of families with a schizophrenic patient. Participants believed that taking care of the patient was a blessing in their life and a reward from God. In fact, they believed that God rewards them for taking care of a patient.
"This is how God gives me sustenance, my sustenance has increased. Since Zahra is living with us, our sustenance has been growing. Zahra has sustenance, when I take care of her, God gives me more sustenance. I do not mean the money, but the blessings." (Participant 8) Presence of the disease led most family members to engage in religious activities and to participate in religious ceremonies. They noted that this closeness to God was impacted by illness of a family member since they felt God's presence in their lives more than ever before.
"With my mother's illness, I became much closer to God, which means I pray a lot. I vow and attend religious ceremonies. Maybe if my mother was not sick, I would not be so close to God. I really feel God has taken my hand in some situations and helped me." (Participant 13(

Social mobility
As a result of illness of a family member, especially the father or spouse, the family lost its social and economic position. Experiences of some participants showed that the family members tried to reach their previous social status, improve their social class, and build their lives.

A ip to change lifestyles
The suffering in caregivers' life caused them to decide to change their lives, build their own lives, and compensate for the damage done to the family. "When my husband fell ill, I said: 'I cannot just sit around and do nothing. I have two children and I have to build my life.' So, I started to change." (Participant 10) The children of the patients were also determined to choose a good path in their lives. They tried to be bene cial to the society; so, they had higher levels of motivation to study and nd a suitable job.
"I got my diploma ... I went and bought an organ ... One day I came to myself and said: 'Hussein, what do you want to do?' At that moment, I decided that I should change my life and serve the people around me ... I sold my organ and bought law books; I told myself that I must go to law school and I should be a member of the parliament in the future. Fortunately, I entered the university the same year." (Participant 11)

Acquisition and enhancement of capabilities
The participants' experiences showed that family members of patients decided to work harder to support themselves. As a result, they began to improve their previous skills or learn new ones based on their work situation. However, if the family head was not sick, they would never think about acquiring or improving their skills.
"My husband's illness has made me learn to live my life. I know needlework; so I go to my mother's house since she does needlework too... During this time, I saw different models and learned them; I did not know them before." (Participant 4) To forget about the problems of living with the patient, some participants tried to entertain themselves with their favorite activities, such as exercising, sewing, going to university, etc. Such activities improved the family members' skills. Experience of living with a patient with schizophrenia, which is a chronic and debilitating disorder, has taught the participants to manage their lives nancially and provide themselves with the necessary welfare amenities. They learned not to wait for help from others. So, they performed income-generating activities.
"I have learned that I have to work and pay for my children anyway. To this end, I accept needlework orders. I have a little income, but it is better than before, since I do not ask others for money." (Participant 4)

Dynamism in social services
According to the participants, dealing with suffering of the disease and observing its negative effects caused them to move beyond the family conditions and decide to serve other people of the community. The patient's activities before the disease were a motivation for the participants to help others.
"After my sister's illness, when we saw that she could no longer go to the local mosque, my sister and I went there. When we do something for the people; well, God will take our hand. We could collect donations for the recent ood victims." (Participant 6)    showed that the presence of a schizophrenic patient in the family caused personal growth in the caregivers (27)(28)(29)(30), which con rms the experiences of our participants. In fact, this growth is not a goal, but a response to what life is all about. In other words, this growth is a valuable part of the human experience that helps them cope with the ongoing challenges of life (31). Increased self-con dence (30,32,33), easier expression of emotions (30,34,35), and increase of patience and tolerance (26) (26,32,37), which are similar to the results of our study. When a family member develops schizophrenia, the di culties caused by the disease may disrupt the family. If family members stay together and share care responsibilities, they become closer to each other and the primary caregiver feels less burden and becomes stronger (14).

Conclusion
The present study provides some evidences with regard to positive consequences of living with a schizophrenic patient based on the experiences reported by caregivers. In fact, the challenges of life and family experiences in caring for the patient have led to positive changes in family perceptions. As a result, investigating valuable experiences of the family members in caring for the patient and examining their strengths can help the researchers to design and develop family interventions for better patient care.

Limitations
Due to the fact that families take care of patients at home, observing all behaviors of family members at the desired times was not possible. The researcher tried to control this limitation by long engaging with the family members and gaining their trust, so that they could express their behaviors freely. Declaration