Caregiver burden experiences of caregivers of patients with schizophrenia: A qualitative inquiry

Abstract

Background:

Parents of children with schizophrenia struggle with emotional, social, and economic burdens because they do not receive adequate support and experience difficulties.

Aim:

To determine the caregiver burden experiences of parents who care for schizophrenic patients and to provide in-depth data on their feelings, thoughts, and opinions on this issue.

Methods:

In this study, the phenomenological method was used. In-depth interviews were conducted with 13 parents. Maxqda 2020 was used for the analysis of the research data.

Results:

In our qualitative study, it was concluded that caregivers were stigmatized by their environment, exposed to social isolation, and stigmatized themselves. It has been determined that the social isolation experienced by the parents negatively affects them economically, socially, and emotionally.

Conclusion:

The results of this study were discussed within the framework of three themes: emotional burden, social burden, and economic burden experienced by caregivers.

Keywords

Schizophrenia caregiver burden qualitative method

Introduction

Schizophrenia is defined as a mental illness that causes the individual to distance himself from reality and become withdrawn, and deteriorate his feelings and thoughts (Aktürk Demir, 2011). This disease, which emerges at the young age of the individual, affects approximately 1% of the world population (Bener et al., 2012). The World Health Organization (1998) states that more than half of schizophrenia patients live with their families. It is thought that taking care of an individual with schizophrenia may have various negative effects on the life of the caregiver.

In families who are just getting acquainted with schizophrenia, one member of the family usually needs to take care of the schizophrenic individual. Due to the emotional impact of the disease, lack of knowledge, and inability to accept, the person who assumes the role of caregiver often does not know what to do. Therefore, it is thought that family members who care for them may encounter some negative situations in this process.

Schizophrenia stands out as one of the chronic mental illnesses that creates the greatest burden of care for the caregiver or people. The burden of care is defined as a multidimensional response to the perceived stress and negative evaluation resulting from the care of the patient. Families may experience experiences that can lead to burdens such as physical, emotional, and economic difficulties, shame, helplessness, and feelings of guilt in the process of caring for schizophrenia patients (Arslantaş & Adana, 2011; Behrouian et al., 2020; Kate et al., 2013; Peng et al., 2019; Ribe et al., 2018; Von Kardorff et al., 2016). However, caregiver family members face psychological disorders such as depression and anxiety and have to struggle with economic difficulties to provide more effective care to their schizophrenic family member (Charlson et al., 2018; Lai, 2012). It is also known that caregivers, who have to devote most of their time to the care of the individual with schizophrenia, have negative experiences such as not being able to spare time for themselves and not being able to fulfill other responsibilities such as family and work (Gater et al., 2014).

One of the most important burdens that caregivers face in this process is thought to be the change they have experienced in their social lives. Caregivers may feel isolated from their social circles in this process, as they have limited time to maintain their friendships and social relationships (Perese & Wolf, 2005). As the need for care of the individual with schizophrenia increases, the social isolation process of the caregiver also increases, and the feeling of loneliness and exclusion experienced by the caregivers is accepted as an important problem for the caregivers (Malla et al., 2015). In addition, another social burden experienced by caregivers is thought to be stigma. The stigma applied by society in the process of having a schizophrenic child is one of the important experiences that negatively affect the caregiver in this process (Guarnaccia et al., 1992; Uzunaslan & Duyan, 2022).

There are limited studies on the experiences of parents caring for schizophrenia patients in Turkey. It is important to determine the caregiving burden experiences of parents with children with schizophrenia, together with its various dimensions. Therefore, in this study, we aim to determine the caregiver burden experiences of parents who care for schizophrenia patients and to present in-depth data on their feelings, thoughts, and opinions on this issue. To achieve this goal, we sought answers to the following questions.

What are the emotional burdens of caregivers during the illness process?

What are the social burdens of caregivers during the disease process?

What are the economic burdens of caregivers during the disease process?

Method

We conducted our research with the phenomenological method, which is a qualitative method for the caregiver burden experiences of individuals with schizophrenia. Qualitative research makes an in-depth definition of people and cultures and tries to reveal the meaning, event, process, understanding, and understanding that people attribute to reality (Kümbetoğlu, 2008). Phenomenology design focuses on phenomena that we are aware of but do not have a deep understanding of (Yıldırım & Şimşek, 2013). Therefore, our research is compatible with the focus of the phenomenological approach, as it aims to determine the caregiver burden experiences of caregivers of schizophrenia patients and their feelings, thoughts, and opinions on this issue.

We collected the research data with a specially designed semi-structured interview form consisting of two parts. In the first part, demographic questions about age, gender, marital, and educational status, and relationship with the patient were included. The second part of the questionnaire consists of semi-structured questions that we prepared for caregivers to fully convey their feelings, thoughts, and experiences.

Research population

The participants of the study are caring parents who are members of the Turkish Federation of Schizophrenia Associations. In the study, we interviewed 13 parents using the purposeful sampling method based on volunteering. We continued to collect data until the saturation point was reached without calculating the sample size. In line with this information, we completed the study by interviewing 13 people, 7 women and 6 men, who have children with schizophrenia. The age of the mothers participating in the study is between 49 and 70, and the age of the fathers is between 48 and 76. The education levels of the participants are as follows: two of the mothers are university graduates, two are high school graduates and two are primary school graduates; three of the fathers are university graduates, two are high school graduates, and one is secondary school graduate.

Procedure

We conducted the research after obtaining institutional permission from the Federation of Schizophrenia Associations of Turkey and the necessary ethical approvals from the ethics committee of Fırat University. We obtained written informed consent from the participants and made a confidentiality statement before the interview. We collected the data between 1.10.2021 and 25.12.2021. We conducted the interviews in the parents’ home environments to obtain more detailed information about the participants through observation of the environment. We used a voice recorder during the interviews and recorded all the interviews with the permission of the participants. Each interview took approximately 40 to 60 minutes. We used pseudonyms instead of real names to ensure anonymity and privacy.

Analysis

The data were collected through face-to-face interviews with the semi-structured interview form we prepared. We analyzed the data we collected from the participants. We used the Maxqda 2020 program for analysis.

We deciphered the audio recordings we obtained as a result of interviews with 13 participants in total. As a result of a detailed literature review, we determined the main themes of the research. We’ve also added additional emerging themes.

Results

We gathered the research findings under subheadings and grouped them under three main themes: (a) the emotional burden of the caregiver, (b) the social burden of the caregiver, and (c) the economic burden of the caregiver.

The Emotional Burden of the Caregiver – I wish we had the opportunity if all three of us died at the same time

When we examined the participants’ feelings of having a patient diagnosed with schizophrenia, we saw that most of them experienced anger and resentment due to the effects of the disease, could not spare enough time for themselves, and their children were dependent on them due to their role as caregivers.

Since I don’t have time for myself most of the time, I can get angry at even the smallest thing. In such cases, I usually take my anger out on myself or my relatives. (55 years, Father 1)

I can be angry sometimes, two months after retiring, the house overwhelmed me so much that I wanted to run away. My wife has had this for years. I thought you were exaggerating. (71 years, Father 3)

My relatives and brothers look at my child as crazy. The feeling of not being able to stand behind my child makes me angry. I am very angry with myself. (48 years, Father 4)

Because of my child, I get angry at even the smallest things and I get very depressed. But I’m used to it now. I am not 50 years old. I am 70 years old. How long will I live that is my test. (70 years, Mother 3)

One of the emotions that creates an emotional burden on caregivers is the caregivers’ fears. When we examined the participants’ expressions regarding their feelings of fear, we found that fear varied according to the age of the caregiver and aggression. Most of the older participants stated that they were afraid of dying because of their role as a caregiver:

Mine can be very aggressive sometimes. I fought with his mother once. He thought we were fighting because of her and attacked me. Even though I was a man, I had a hard time calming her down. Then I was thankful that he wasn’t a man. Otherwise, she could have killed us in such situations. My wife is very afraid. We even lock the bedroom door when we feel that times like this will come. You can’t imagine what it’s like to be alert even when you’re sleeping in your own home. (55 years, Father 1)

You know that a healthy child will one day grow up, become an adult. The parents’ sense of responsibility ends. But parents who have a child with schizophrenia feel the responsibility for their child until they die. I am afraid of dying before my child. (76 years, Father 2)

Let’s say we are used to this situtation, the feeling of knowing that nothing will ever be the same scares me. (56 years, Mother 7)

I used to be angry that my child was so dependent on me. I’m not angry now. I am scared. When I was young, I used to pray, Allah, forgive my life for my child. Now, if there is no sin, I will pray, Allah, take my child’s life before me. You’ve heard of it. Parents pray for their children, Allah, take my life away, give it to my child. I cannot say this prayer. (70 years, Mother 3)

I’m afraid of what my child will do if I die. I am afraid of how I will do it alone if my wife dies. Then I think about what my child will do if we both die. I wish we had the opportunity if all three of us died at the same time. (69 years, Father 5)

When we examined the other emotional burdens of caregivers, we found that they experienced feelings of longing, fatigue, neglect, helplessness, guilt, and hopelessness:

I miss being alone with my wife so much. (67 years, Mother 2)

I met my wife at school. I miss those days so much. (69 years, Father 5)

I feel tired. The tiredness of the sense of responsibility. (62 years, Father 6)

I think it would not be wrong to say that my child is like an organ of me. This feeling of dependency also limits what you do after a while. And you give up. (56 years, Mother 5)

I am a very social person. But sometimes there are times when I can’t enjoy having fun. (67 years, Mother 2)

Social burden of the caregiver

When we evaluated the answers given by the participants regarding the social burden of being a caregiver, most of the caregivers stated that they did not do many things that were considered normal before the illness after the illness. They also stated that this creates a social burden on them.

For example, we cannot accept guests in the house. Once, when a guest came to the house, he said that you called me to send me from the house and caused trouble. (55 years, Father 1)

Sometimes even a walk with my friends after work felt good. Before the illness, I was thinking about the housework, but after the illness, these things tired me even more mentally. (56 years, Mother 4)

Before my child’s illness, I had good relations with my neighbors, relatives, friends. We would visit. We used to meet outside. But it is not like that right now. Because relatives, neighbors do not understand our situation. They usually blame us, they don’t help. (56 years, Mother 5)

We can’t visit holidays anymore, we can’t go to weddings often. Even if we go, one of us can go. He returns with our gift. We cannot accept guests in the house. What does it mean to accept anyway, nobody opens the door of our house. I cannot see our neighbors because of my child. (48 years, Father 4)

For example, people don’t come to visit me anymore, except for my close circle. I’m not going either. With this disease, people understand very well the value of the people around them. I can’t be angry with people who have distanced themselves from us. Because it is a very difficult disease. (70 years, Mother 3)

It has been a long time since my child’s illness appeared. But of course, there are things that I remember before the disease. We would all go to picnics with peace of mind. It was a nice activity with relatives and close friends. We could have fun. We wanted to try again, but we couldn’t. Because of my child, my environment moved away, we wanted to go with our group that did not go away, my child did not give peace when we went. We said let’s go without him, our minds were left behind. In other words, our social life before and after has changed a lot. (71 years, Father 3)

Caregivers stated that they were exposed to exclusion from many parts of the society because of their schizophrenia child. It is thought that the social burden of caregivers will increase even more with exclusion:

People in society have trouble accepting things they don’t have. They can be brutal and push the different out of the circle. I guess this is our situation too. (69 years, Father 5)

Neighbors in the neighborhood, distant relatives, or close relatives who love to gossip very much excluded us. (70 years, Mother 3)

I always stay one step behind my surroundings. Even my neighbors exclude it. It’s a bad feeling to be ostracized by the people I’ve always met, eaten, and drunk with. (56 years, Mother 5)

Society loves to excommunicate the different. It is in human nature to marginalize and exclude. Especially against what is at a disadvantage and for which he is not properly informed. If they read a little and get informed, maybe they wouldn’t call them crazy, they wouldn’t call them demonic. (56 years, Mother 4)

We can’t take my child to public places or any place very often because we don’t know when she will get angry and cause some problems. This builds a wall between us and society. Society excludes and moves away from us. We close ourselves. (71 years, Father 3)

Families who allowed my child to see their children until he got sick suddenly cut off communication after he got sick. This situation affected us a lot. However, it affected my child the most. Both the process of accepting the disease and this feeling of exclusion have worn him out. (59 years, Mother 1)

Another dimension related to the social burden of caregivers is the stigma they are exposed to in their social environment. The caregivers stated that they, other family members and the individual with schizophrenia were exposed to the stigma process:

The fact that people who were very good before, now brand my child crazy and talk behind my back, summarizes the view of society towards us. (59 years, Mother 1)

I once heard my coworkers use the term crazy for my daughter. I was very angry. But not because they called my daughter crazy. I have a hard time understanding how people can act so emotionless and soulless. (55 years, Father 1)

One day we are at our brotbrother’s told my brothers about the disease, but they don’t know the severity either. My daughter had a sudden outburst of anger. He attacked his cousin. He attacked his mother. He said unspeakable things to his aunt. My brother, this has nothing to do with the disease. He said your daughter can’t shoot us. Think about the person I call closest. We felt very alone. As a result, Everyone is avoiding us because of their aggressive behavior. It’s branded as crazy. (48 years, Father 4)

People cannot accept the disease when they are not themselves. They offend. They behave negatively, thinking that they will attack. They call me psychic. And obviously, both to us and my child. (69 years, Father 5)

Even my closest friends feel sorry for my child and exclude him. In particular, they brand him crazy. The last time we had something like this. My child’s aunt saw her daughter at the bus stop, pretending not to recognize her, and passed by without saying hello. He was very upset about this. (62 years, Father 6)

Economic burden of the caregiver

Participants stated that they experienced economic problems as a result of their caregiving responsibilities. The caregivers emphasized that they sacrificed their expenses, went to different doctors, and stated that the expenses of other family members were heavy and that they had economic difficulties:

Medication expenses, hospital expenses, travel, food, etc. It’s all about money, unfortunately. Things that seem very small to people, but we were having a hard time with the care expenses of your child, the expenses of our other children, and your expenses. My wife managed this process many times by closing another loan debt with a loan. (70 years, Mother 3)

I organize our family budget according to the child and I cannot spend it for myself because of my child’s expenses. Because it is not clear when an additional cost will be incurred. E.g; I cannot use public transportation when my child goes to the hospital during attacks. I’m going by taxi. If you think that I go every two or three days, it is a serious burden for families like us. (59 years, Mother 1)

Due to the expenses of my child, I cut back on my expenses as much as possible. (76 years, Father 2)

At first, there was no doctor we did not go to, especially hope. In other words, my child’s health is pushing our family budget and continues to do so. We just got used to it. These expenses became our monthly item. (55 years, Father 1)

We have rearranged our economic expenditures within the family. The thing is, I’m a self-care person. I’ll buy clothes and shoes. Now I can’t take what I’ve seen without thinking twice or three times. Most of the time, I don’t buy it even if I think about it two or three times. (48 years, Father 4)

I stopped spending that I deemed unnecessary or arbitrary. I spend it on my child. For example, all these years I have thought about quitting smoking. I couldn’t let go. After the illness, I thought it was an unnecessary expense, so I left it as a necessity. (56 years, Mother 4)

We need more money because of my child’s illness. Because when we take them to psychiatrists in public hospitals, some of them do not even let us in. Consider that he is the doctor of the disease and he is afraid. We took him privately for a long time. However, it was very difficult for us. This time, we were unable to cover the expenses of other family members. Due to economic problems, my wife has come to the brink of suicide many times. I have witnessed many times that he was crying by biting his hands so that my children would not hear. (56 years, Mother 5)

Some of the participants stated that they tried different ways to cure the disease in addition to the necessary expenses in this process and that this situation had worn them out economically.

At first, we looked for solutions other than doctors. A lot of money went there. So we went to the teachers. We looked elsewhere for the remedy. I regretted it a lot later, but it was too late. It was a burden in a way. (76 years, Father 2)

Now when I say this, I am really angry and ashamed of myself. At first, we hoped for a lot of help from the teachers besides the doctor. We lost serious money. It was a complete waste of money. (71 years, Father 3)

From the beginning of the disease, I took him to the teachers besides the doctor. I spent a lot of money on them too. I even took it for a long time. Both doctor and teacher. I continued that because the medicines given by the doctor were good, the healing of the teacher also worked. I realized much later that I was wrong. At that time, we could not manage our money properly. (69 years, Father 5)

Discussion

Caregiver burden is a concept used to express the physical, psychological, social, and economic reactions that can be experienced while giving care. The effects of caregiver burden on patients with schizophrenia are expressed emotionally, socially, and economically (Magliano et al., 2002). In our study, three main themes emerged from the caregiver burden experiences of patients with schizophrenia. These; The emotional burden of the caregiver, the social burden of the caregiver, and the economic burden of the caregiver.

Emotional burden of the caregiver

We have determined that the caregivers participating in the research have changed their roles in the family, have problems of adaptation to social life and the social environment, and have communication problems among family members in the process that started with the diagnosis of the disease in their children. Depending on these problems, we determined that the most intense emotion they experienced was anger. Many studies in the literature support this result, and in most of them, it is seen that the causes of anger differ. It is seen that the boredom of caregivers with a child with schizophrenia, having a certain routine every day and doing the same things all the time, causes anger and resentment (Nuraini et al., 2021). Ganguly et al. (2010) stated in the study that the caregiver could never leave their child’s side, and that at least one person should be with them, and that this situation triggers the feeling of loneliness and isolation over time and that it can be expressed with negative emotional states such as anger and resentment. Neha et al. (2021), in his study with caregivers, stated that one of the participants used violence from time to time due to his child’s aggressive behavior and later regretted it. Although the extent and state of anger varies, many studies with caregivers have found results consistent with the results of our study (Akgül Gök & Duyan, 2020; Brain et al. 2018; Koschorke et al. 2017; Lima & de Andrade Lima, 2017). Another emotional burden experienced by caregivers is fear. The state of caregivers regarding fear can also vary, as can anger and resentment. While some of the participants felt fear of their children’s aggressive attitudes, others stated that they had fears about what would happen to their child if he was not himself. Some studies in the literature support this finding (Arslantaş et al., 2009; Boss, 2000; Brain et al., 2018). Other emotional burdens experienced by caregivers throughout the process; longing, fatigue, neglect, helplessness, guilt, hopelessness, pity, aggression, and doubt. Almost all of the studies on caregivers found similar results to the negative moods we identified in this study (Abedi et al., 2020; Akbari et al., 2018; Cleary et al., 2020; Kristanti et al., 2019; Özen et al., 2018; Tristiana et al., 2019).

Social burden of the caregiver

In the study, caregivers stated that there were significant changes in their lives before and after the illness. They stated that most of the time they spared for themselves, their activities with the family, and their relations with relatives and neighbors were restricted or completely cut off because of the caregiver role before they became ill. We think that this is a social burden on caregivers. When the literature is examined, it is seen that there are studies that reach similar results. Bademli and Lök (2020), in their study with caregivers with schizophrenia, stated that most of the caregivers had a very easy life before the illness, their social life was restricted after the illness and they did not have a life of their own. Similarly, in a study conducted with caregivers of patients with chronic mental illness, similar to our study, it was stated that the role of caregiver is a difficult and unpredictable experience that requires effort and that the quality of life of caregivers is adversely affected (Saunders & Byrne, 2002). It is seen that similar results have been reached in many studies in the literature (Akgül Gök & Duyan, 2020; Doval et al., 2018; Neha et al., 2021; Ohaeri, 2003; Zimmerman, 1995). The most important source of social support for caregivers throughout the process is their families. The support of family members in this process directly affects the social well-being of caregivers. In our study, caregivers stated that the inadequacy of the social support they received from their spouses and other family members also affected their caregiver roles. In the literature, it is possible to come across studies emphasizing the importance of family support for caregivers (Akgül Gök & Duyan, 2020; Chou, 2000).

Another social burden that caregivers are exposed to in our study is social exclusion. Most of the caregivers stated that they were excluded by the society and as a result of this situation, they entered the process of social isolation. Gülseren et al. (2010) stated that the exclusion of caregivers and families with schizophrenic individuals by society causes the family to live in isolation and mentioned that it will negatively affect the self-esteem of the caregiver. When we look at the literature, it is seen that the social exclusion dimension is discussed in many studies on caregivers. Neha et al. (2021), in their studies, found that caregivers with schizophrenia are isolated by their relatives and neighbors and that everyone stays away from them and isolates them. Boardman (2011) emphasized that the process of social exclusion, together with the trauma of the illness, negatively affects the caregivers, the family, and the individual with schizophrenia. Similar to our study, it is possible to come across studies in the literature showing that there are negative dimensions of social exclusion (Attepe Özden & Tuncay, 2018; Barak & Solomon, 2005; Larson & Corrigan, 2008; Loganathan & Murthy, 2008; Özbaş et al., 2008).

Another dimension in which caregivers negatively affect themselves as a social burden is stigma. Although the concepts of social exclusion and stigma are generally considered together, they differ in terms of the effects they leave. The stigmatization experiences of the caregivers participating in our study also show that exclusion and stigma have different effects. Most of the caregivers shared their stigmatization process by talking about a traumatic experience. Looking at the literature, there are studies similar to the results of the study (Boehm & Staples, 2002; Lee et al., 2006; Molefi & Swartz, 2011; Schulze & Angermeyer, 2003).

Economic burden of the caregiver

The participants emphasize that having a child with schizophrenia causes them to have an unequal income distribution within the family, often having difficulty in meeting the expenses of medicine and hospital, and limiting their expenditures for the personal needs that everyone deems necessary, and they state that this creates an economic burden on them. Nuraini et al. (2021) found in their study that caregivers experience financial problems due to their care responsibilities, cannot afford care costs such as transportation and medicine, and in some cases, they have to use financial loans to cover these costs. When we look at the literature, it is possible to come across studies with similar results to our study (Chen et al., 2019; DiBenedetti et al., 2016; Ganguly et al., 2010).

It has been seen that one of the reasons why caregivers experience an economic burden is that they try different ways in search of solutions for the disease. Some of the caregivers stated that they tried to get rid of the disease with religious rituals other than medical solutions and that they had worn themselves out economically during this process. Nuraini et al. (2021), in their study with caregivers in Indonesia, concluded that almost all caregivers take their patients to a shaman or healer and it is more expensive than taking them to a doctor. Similarly, in the study of Attepe Özden and Tuncay (2018), caregivers stated that they went to healers by borrowing money and sought a cure.

Conclusion

In this qualitative study conducted in Turkey, the majority of caregivers state that they struggle with emotional, social, and economic burdens. The available literature supports these results obtained from the study. However, the fact that this study is carried out qualitatively and expresses the problem in terms of Turkish culture makes an important contribution to the existing literature. The result obtained from the study is that the burden of care for parents’ struggles negatively affects all aspects of their lives. This result and the generality of the study showed us that there is a need for family-based interventions and group work to solve the problem. We think that our study will contribute to the development and implementation of interventions and group studies for parents to cope with the burden of care effectively and to protect and improve their mental health status.

Footnotes

Acknowledgements

We thank all the caring parents who participated in the study.

Funding

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

ORCID iD

Şerif Uzunaslan

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