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 flip to change lifestyles, acquisition and enhancement of capabilities, economic dynamism, and dynamism in social services) (Table 3).
1. Developing positive personality traits in family members
Based on the findings, living with and caring for a patient with schizophrenia caused significant 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.
1.1 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)
1.2 Stronger in the face of life problems
The problems raised by living with a schizophrenic patient strengthened the family members' sense of self-confidence. They believed that these difficulties 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)
1.3 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)
1.4 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)
1.5 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)
1.6 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)
1.7 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)
2. 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.
2.1 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)
2.2 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)
2.3 Increasing support among family members
Due to the lack of social support resources in Iran, families of patients with schizophrenia experience severe financial, emotional, and psychological stress. Experiences of families in this study showed that in such situations, family members provided the role of financial, 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)
3. 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.
3.1 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 qualifications 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.
"Since my sister became ill and I saw her behaviors, I realized that maintaining the health of nerves is crucial. I am more concerned about my health and my children's health. I try not to get upset by little things." (Participant 1)
3.2 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)
3.3 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(
4. 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.
4.1 A flip 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 beneficial to the society; so, they had higher levels of motivation to study and find 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)
4.2 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.
"In order to entertain myself and forget about my sick husband, I entertained myself with my favorite activities. I continued my studies, got a diploma, and then got two bachelor's degrees. I started a sewing school,established a gym, and continued my favorite sport ...” (Participant 10)
4.3 Economic dynamism
According to the participants' experiences, family responsibilities led them to pursue income-generating activities; their efforts to support family expenses improved their economic conditions.
"I could manage my life even better than when my husband was not sick. Thank God my income was not bad. I helped my daughter and son to get married. I work and pay my husband's expenses. Once a year, I hospitalize him in the hospital." (Participant 2)
Experience of living with a patient with schizophrenia, which is a chronic and debilitating disorder, has taught the participants to manage their lives financially 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)
4.4 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.
"I pursued establishing a charitable school on the outskirts of the city ... or I pursued a lot to get the privilege of a facilitation office there ... I owe all this success to the hardships I endured because of my father's illness." (Participant 11)
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 flood victims." (Participant 6)
Table 1: Participants demographic characteristics
Age
|
Marital status
|
Educational level
|
Gender
|
Relationship with patient
|
Occupation
|
Duration of the disease (year)
|
42
|
Married
|
Secondary school
|
Female
|
Sister
|
Housekeeper
|
3
|
40
|
Married
|
Primary school
|
Female
|
Spouse
|
Worker
|
3
|
33
|
Divorced
|
Secondary school
|
Male
|
Brother
|
Building painter
|
0
|
31
|
Married
|
Illiterate
|
Female
|
Spouse
|
Needle working
|
4
|
32
|
Single
|
Bachelor
|
Male
|
Uncle
|
Teacher
|
0
|
30
|
Single
|
Diploma
|
Female
|
Sister
|
Kindergarten Instructor
|
0
|
45
|
Married
|
Primary school
|
Female
|
Mother
|
Housekeeper
|
7
|
40
|
Married
|
Primary school
|
Female
|
Half-daughter-in-law
|
House worker
|
2
|
65
|
Married
|
Bachelor
|
Female
|
Mother
|
Teacher
|
2
|
43
|
Married
|
Bachelor
|
Female
|
Spouse
|
Sewing instructor
|
2
|
32
|
Married
|
Master
|
Male
|
Son
|
Employee
|
2
|
25
|
Single
|
Diploma
|
Female
|
Daughter
|
Housekeeper
|
12
|
24
|
Single
|
Bachelor
|
Female
|
Daughter
|
Student
|
22
|
55
|
Married
|
Primary school
|
Male
|
Spouse
|
Self-employed
|
22
|
48
|
Married
|
Primary school
|
Female
|
Spouse
|
Housekeeper
|
10
|
Table 2: Formation of a category
Subcategories
|
Categories
|
Examples of semantic units
|
Examples of quotations
|
Strengthening family ties
|
Increasing dependence and affection among family members
|
-Perceiving the intensity of a father's interest in his children after a child was ill; The father had a stroke after the child was hospitalized
-The parents' getting closer after the child's disease
-Perception of the family members' love as a result of the disease
|
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.
|
Family members' empathetic participation in patient care
|
-All family members follow the treatment process of the patient
-Cooperation of married children in patient care
-Patient care by all family members
|
My sister takes my mother to the clinic every month; she keeps the date of visits. Physicians tell us about the doses of her medicines and I give her the medicines.
When we have some other things to do, my sister takes my mother to her house and her husband is very considerate of my mother.
|
Increasing support among family members
|
-Family members' support of younger children
-Children's support for the father of the family
-The children's efforts to reduce the burden on the father of the family
|
My father and older siblings too care of the younger children.
As we got older, we paid a lot of attention to my father and helped him to reduce the burden on his shoulders.
|
Table 3: Categories and subcategories extracted from the data
Subcategories
|
Categories
|
Theme
|
Easier expression of emotions
|
Developing positive personality traits in family members
|
Family achievements in the battle with schizophrenia
|
Stronger in the face of life problems
|
Greater intellectual development than peers
|
Patience
|
Enhanced communication skills
|
Faster achievement of independence
|
Increased ability to understand others
|
Increasing dependence and affection among family members
|
Strengthening family ties
|
Family members' empathetic participation in patient care
|
Increasing support among family members
|
Understanding the importance of mental health
|
Developing insight into life
|
Changing mindset from comfort to peace in life
|
Feeling the presence of a superior power in life
|
A flip to change lifestyles
|
Social mobility
|
Acquisition and enhancement of capabilities
|
Economic dynamism
|
|