Putting the broken pieces of life together, Baloch family caregivers’ confrontation with schizophrenia: a phenomenological study

Abstract

Background

Long-term care of patients with schizophrenia, which creates a burden of care, leads to disruption in interactions, social and personal relationships, changes in lifestyle, and shifts in the roles of family members. This study aimed to explore the lived experiences of family caregivers who are caring for a family member with schizophrenia within the Baloch ethnicity.

Methods

This is a qualitative study, using a descriptive phenomenological approach. A total of fifteen family caregivers of patients with schizophrenia participated in the study. Data were collected by a semi-structured interview.

Results

Twenty-one categories, seven sub-themes and one theme were extracted. “Putting the broken pieces of life together” was the main theme with sub-themes of “Ignorance confrontation”, “Schizophrenia acceptance process”, “Restoring a chaotic context with human and non-human approaches”, “Support seeking”, “Escaping from stigma”, “Roles restoring”, and “Lifelong caring”.

Conclusions

For a family with a member with schizophrenia, restoring family life is a top priority. However, schizophrenia is so debilitating and destructive that it threatens not only the peace of the family but also the survival of the family, and it requires constant effort and complete support to restore and maintain life.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40359-025-02358-z.

Background

Schizophrenia is one of the severe and debilitating mental illnesses that cause disturbances in the process of perception, thinking, behaviors and social functioning of the affected person [32]. Schizophrenia is the eighth leading cause of disability among those aged 15–44, with approximately 21 million people worldwide being affected [5]. More than 69% of patients with schizophrenia fail to receive proper treatment, and 90% of these untreated patients reside in low- or middle-income nations [27]. Schizophrenia is associated with economic, social, and personal issues due to disturbances within the patient’s occupational and academic performance and imposes considerable medical and non-medical expenses on the family and society [20, 22]. Patients with schizophrenia become dependent on family caregivers due to the disabilities of the disease [40] and in the absence of proper support services in the community, most of the families of these patients are their main caregivers [25]. A family member suffering from severe schizophrenia can impact the whole family [28]. Long-term care of these patients results in a care burden, causing interruptions in interactions, altering social and personal relationships, and changing the lifestyles and roles of family members [21]. Families endure many pressures, including the stress of caregiving, fear and shame regarding the signs and symptoms of the disease, stigma, uncertainty about the disease process, and lack of social support [41, 47, 57]. Therefore, caring for patients with schizophrenia bring unique challenges and persistent pressures for the family, impacting the physical and mental health of other family members [38].

Family adaptation in the care of patient with schizophrenia may be a common challenge in both developed and developing countries [10]. In studies conducted in Sweden, Thailand, and Morocco, families preferred or were obligated to care for the ill member in spite of its challenges [23, 46].

Culture and mental health are two completely interconnected concepts; schizophrenia is also a culture-specific illness. Cultural and religious beliefs, race, language, and social values ​​are among the factors that influence how families with members suffering from schizophrenia operate [34]. The perception of caregiving among caregivers differs based on cultural context. Therefore, it is essential to take into account family customs and traditions [41].

In Iran, the culture is profoundly rooted in Islamic values ​​and emphasizes the significance of family concordance and taking care of vulnerable relatives [19]. In Iran, families care for their patients, and it is estimated that 65–75% of individuals with schizophrenia in the country reside with their families. Consequently, this disease in a family member causes a heavy burden on the whole family; especially since Iranian families have limited access to official support services in comparison to developed countries [52].

The Baloch people live in the Sistan-Balochistan province in southeastern Iran and share important linguistic, religious and cultural characteristics. Most of the Baloch people are Muslim, Sunni, and speak the Balochi language. The Baloch ethnic group is a traditional society characterized by tribal character, male dominance, and large families [14]. Family members maintain close ties with each other, support one another, and share responsibility for each other [13]. Families need to adapt to stress in order to maintain their health and lifestyle [33]. Families employ various coping strategies to adapt, and numerous elements, including the interactions among family members, family unity, emotional relationships, and others, influence the coping strategies they utilize [19].

The process of adaptation occurs within a social context and is affected by a range of individual, social, cultural, and medical influences [26]. The Adaptive strategies of Baloch people is deeply intertwined with traditional, cultural, and religious beliefs, as well as tribal customs. The primary traits of the population include diligence, perseverance, and adaptability [14]. The Baloch ethnic culture is firmly rooted in Islamic principles, highlighting the importance of familial unity and the obligation to support vulnerable relatives. Within families, members maintain strong connections characterized by mutual care and shared responsibilities [13].

Many studies show that the family with a member suffering from schizophrenia and psychiatric disorders faces many challenges to achieve adaptation. This is while there are many unknown aspects of this process that prevent their problems being solved [16, 26]. Identifying how the family adapts to schizophrenia can be achieved by thoroughly understanding the individual experiences of family members concerning their adaptation. Gaining insight into the experiences of family members can enhance our understanding of their unique situation, enrich the healthcare team’s knowledge in this field, and subsequently improve the effectiveness of families in patient care [29]. The process that the families of patients with psychotic disorders go through during adaptation to the disease incorporates a subjective nature that cannot be measured by quantitative methods; it can be achieved through interviews and in-depth discussions to identify the actual needs of these families. This can be accomplished by carrying out research using a qualitative method [38]. On the other hand, the researchers did not find sufficient literatures regarding family compatibility and strategies to address issues in families with a member affected by schizophrenia [24]. In addition, shortage of health infrastructure in Sistan and Balochistan province, along with a below-average number of beds, prompted the researchers to conduct a qualitative study aimed at exploring the lived experience of family caregivers who are caring for a family member with schizophrenia in Baloch ethnicity [49].

Methods

Design and setting

This is a qualitative study using a descriptive phenomenological approach. The phenomenological study focuses on the essence of a phenomenon as experienced by individuals in a way that has been perceived by the person [36]. This study was conducted from May 2023 to February 2024 in Sistan and Balochistan, which is one of the largest provinces in Iran following Kerman.

The setting for this qualitative study was the psychiatric hospital and the patients’ homes. The province of Sistan-Balochistan has two psychiatric hospitals located in Zahedan and Iranshahr, offering a total of 120 operational beds. The province of Sistan-Balochistan has a population of over 3 million people, and its capital is Zahedan. A key attractions of the province is its unique cultural identity. These characteristics can be observed in many cultural aspects, including language, religion, clothing, and religious ceremonies [50].

Participants and sampling

Participants consisted of family caregivers of individuals with schizophrenia who fulfilled these inclusion criteria: being of Baloch ethnicity, possessing physical and mental health, serving as a direct caregiver for the patient, residing together with the patient, and being over 18 years old [18, 42], caring for a patient at least one year following the diagnosis of schizophrenia [17]. Purposive sampling was used. To ensure maximum diversity, participants included both males and females, representing various social, educational, and financial backgrounds. Data collection continued until saturation was achieved. In this study, data saturation was reached with 13 interviews, but to ensure greater confidence, the interview was extended to a total of 15. Sampling started at a psychiatric centers located in Sistan and Balochistan province. Once the required permissions were secured, the addresses and phone numbers of patients with schizophrenia were extricated from the medical records departments. Then, the researchers made phone calls and started the interviews.

Data collection

Fifteen family caregivers of patients with schizophrenia were registered in the study by purposive sampling.

Data were collected by a semi-structured interview with all participants to obtain their lived experiences with “confrontation with schizophrenia” in the context of the study. Data were collected by the second author. All interviews were audio recorded and, subsequently, were transcribed word by word. Several sample interview questions were: “What actions did you take to preserve family stability when a member showed symptoms of schizophrenia?”, “How did family members face and handle the situation? According to the answers from the participants, additional probing questions were posed. The interviews were conducted in Balochi. These were translated into Persian by F. D. prior to data analysis. She is of Balochi origin and is fluent in Balochi and Persian. Interviews with participants were conducted in the hospital or at their homes, based on their preferences. The duration of the interviews was 45–65 min. All interviews were audio recorded with the participants’ consent. The interview process was evaluated by the first and second authors.

Data analysis

Colaizzi’s descriptive phenomenological method was used to analyze the qualitative data. Data were analyzed immediately after each interview. Colaizzi’s method includes seven distinct steps: first, researchers immerse themselves in the data to gain a comprehensive understanding of participants’ experiences through verbatim interview transcriptions; subsequently, significant statements are identified by extracting essential phrases that convey the essence of the participants’ experiences related to the phenomenon; third, meaning is formulated by analyzing these key statements to uncover recurring themes and patterns; fourth, themes are developed by synthesizing the identified meanings; fifth, similar themes are clustered together to form coherent categories; sixth, a thorough description of the phenomenon is crafted; and finally, the results are presented back to the participants for verification and validation of the interpretations [54].

Trustworthiness

The rigor of this qualitative study was attained by utilizing the Lincoln and Guba Criteria [2]. To ensure the credibility of the qualitative data, the data were gathered from both men and women, both married and single, alongside participants from various social and economic levels. Member check was used and the extracted codes and categories were confirmed by the participants. Some participants confirmed the final structures of statements to ensure the deep description of the participants’ experiences. Transferability of the data was ensured through a comprehensive description of the context, participants, and the processes of data collection and analysis. Furthermore, the research team conducted several meetings to attain a consensus on the data analysis and the final results. Also, the dependability of the data was achieved through an audit trail carried out by two individuals, who are part of the study, both possessing PhDs from two different universities and are experts in the qualitative research. All codes, along with their labels, categories, sub-themes, and themes, were reviewed and approved by them.

Ethical considerations

The ethics committee at Iranshahr University of Medical Sciences approved this study with code IR.IRSHUMS.REC.1400.014; all ethical standards of the 1964 Helsinki Declaration were followed. Another ethical consideration was obtaining informed consent from the participants while guaranteeing their anonymity and the confidentiality of their data. Participants were informed about the aim of the study. They were also provided with essential details regarding voluntary participation, data confidentiality, and the possibility of withdrawing from the study at any time. Furthermore, informed consent forms were gathered from the participants. Participants chose the time, place, and length of the interview. The first author kept the audio files in a safe place in an encrypted file on a computer. The participants were free to withdraw from the study at any point during the research.

Results

Descriptive findings

A total of 15 family caregivers of patients with schizophrenia participated in the study. The mean age of participants was 38.04 ± 9.80 years. 67% of them were married. Additional information is provided in supplementary 1.

Qualitative findings

After analysis, 1295 primary codes emerged. Following integration, 975 similar codes, 21 categories, 7 sub-themes and one theme were extracted, Table 2. “Putting the broken pieces of life together” was the main theme with sub-themes of “Ignorance confrontation”, “Schizophrenia acceptance process”, “Restoring a chaotic context with human and non-human approaches”, “Support seeking”, “Escaping from stigma”, “Roles restoring”, and “Lifelong caring”, (Table 1).

Table 1.

Family caregivers’ experience of confrontation with schizophrenia of a family member

Theme	Sub-theme	Categories	Quotations
Putting the broken pieces of life together	Ignorant confrontation	Paradoxical reactions	“When his delusions began, we initially thought he was joking since he stayed quiet for 10 days and didn’t argue at all. I told him to respect his dignity in front of our children”.(Pn.10) Another participant stated: ”When my husband told his family that, my wife is having an affair with another man, at first they thought that he was right and that I had committed adultery. My mother-in-law trusted his statements and asked, why would you betray your husband? ” (Pn.2)
		Conflict with the psychotic patient	“His mother and brothers came and asked him why he set the house on fire. He didn’t answer. His brothers were furious and a violent argument broke out between them.” (Pn.10) Another participant said: “Because of his bad behavior, we all became enemies and distanced ourselves from him. Rather than doing something for him, we rebelled against him. I was always fighting with him.” (Pn.11)
		Resorting to superstition	“We said maybe Jinn caused this situation. His behavior was strange, so we became even more worried. We were anxious because we thought he had some dangerous illness or that he was possessed by some so-called ghost, jinn or something. We took him to the prayer writer.” (Pn.5) Another instance is: “Right now, if they tell me that there is a good prayer writer somewhere, I will take her (the patient) there immediately, hoping to cure her illness.” (Pn.14)
	Schizophrenia acceptance process	Cultural barriers to the treatment	“I have a sister who is married. When she came home and found out that we had hospitalized him, she complained and asked me why did you take him to the “mad ward”? You risked the family reputation. Everyone will make fun of us tomorrow.” (Pn.4) Another participant said: “They told us if you send her to the hospital, the neighbors will say that she’s crazy and no one will want to marry her”. (Pn.15)
		Surrender to medical treatment	“The doctor visited her and said she should be hospitalized. At that moment, I really didn’t know what to do. They ordered me to take the patient to the hospital, but I did not do it. I returned home to see what everyone else in the house was thinking. As she was so upset, we decided to take her to the hospital.” (Pn.8)
		Post decision grief	“When my mother was hospitalized for the first time, we were like orphans. It was a difficult time for us, even though peace returned to the house without my mother, it was painful and everyone was crying somewhere.” (Pn.12)
		Tolerating burden of medical treatment	“He had been having seizures ever since the doctor changed his medication. He also urinates when he has a seizure. The last attack occurred 1 week before admission. At that time, he collapsed and passed out in the bathroom, and was hospitalized for three days in the intensive care unit, probably due to a brain concussion.” (Pn.7)
	Restoring a chaotic context by human and non-human approaches	Effective approaches to stress management	“When we are really fed up with him, we’ll take him to the hospital, He’ll feel better once he’s there and the family will be able to settle down at home, at least for a while.”(Pn.2) Another participant said: “When he assaulted the police vehicle and the officers in the street, they beat him and took him to the police station. When we brought him back home, we didn’t ask him anything. We believed that what occurred could cause him to feel even worse. He never mentioned a thing regarding it.” (Pn.4)
		Unethical approaches against a devastating nature	“They tied his hands and feet with chains, preventing him from leaving the house. They kept him in a room for three or four months. He asked them to give him food and water. He screamed that you’re tying me up here like a dog.” (Pn.3) Another participant stated: “In order to get rid of him, my uncle bought some illegal narcotics and put them in my father’s room. When my father was there at night, he contacted the police and informed them. When the police officers arrived, my father ran away. However, the police failed to catch him.” (Pn.9) Another instance is: “A lot of people around us said we should give her a small amount of opiates to calm her down. My father did that and my mother calmed down a little, but her addiction made our problems even worse.” (Pn.12)
		Appeal to spirituality	“I always pray and read the Quran (The Muslim holy book) and say: God, please heal my son.” (Pn.7) Another participant said: “When my mother is not feeling well, I often take part in ritual ceremonies. My mother’s health is my only concern.” (Pn.13)
		Masking disappointment	“We prayed for two years that my father would become as he was before this disease. For two whole years, I woke up in the morning and prayed after night prayers that God would help him by letting him pass.” (Pn.12)
	Support seeking	Seeking support based on indigenous culture and tribal life	“I told my cousins: “My sister is your responsibility, my husband is a stranger and is currently ill and disabled, and so he cannot do it. Pay to take her to the hospital. After all, the ceiling of her room was also damaged and part of it completely collapsed. If everyone pays, we can hire a room in the village for her and my mom.” (Pn.1) Another participant said: “The wife’s family cannot admit the patient to a psychiatric hospital without the permission of the patient’s paternal family. If the wife’s family does it without permission, her husband’s family can sue. Because the paternal family and heirs are considered the guardians of the patient unless they decline that role.” (Pn.7)
		Seeking government support	“I needed to pursue the matter for an extended period until the hospital provided a letter to the government verifying my husband’s mental illness. However, we still haven’t gotten the money. My spouse was unwell, so I visited the agency multiple times, yet there was no reply. Further follow-up is required.” (Pn.4)
	Escaping from stigma	Conservatism	“I kept my husband’s illness a secret from others since a lot of people ridicule those with mental health issues. Individuals often harbor negative perceptions of mental illness, which is why we prefer that only our family be aware.” (Pn.6)
		Self-imposed isolation	“Our interactions with neighbors and acquaintances have decreased, and I almost never go to their homes anymore. I don’t want people to know that his behavior has changed because of his mental illness.” (Pn.15)
	Roles restoring	Staying on the line	“Once he takes his medicine and starts to feel better, his brothers take him to his job. If my brother or father had something to do, they would bring him along as well. My husband used to be a builder. However, he can no longer perform the tasks he used to at the heights, he only engages in simpler activities.” (Pn.8)
		Accepting new roles	“I had two younger sisters, and when my mom got sick, I became their mother and devoted everything I had earned to them. I had to care for and nurture them in place of my mother. I cleaned, fed, dressed, did laundry, and even handled school-related duties for my sisters.” (Pn.12) Another participant said: “Our place has changed. My dad was unable to work, which meant he couldn’t provide for the family. My brother left high school and became a laborer, while I sewed to help the family.” (Pn.13)
		Changing lifestyle in a new context	“Once he got sick, my life transformed completely. I always went to the gym. I used to exercise, but now I need to look after my younger brother. I seldom hang out with friends.” (Pn.4)
	Lifelong caring	Endless anxiety for a distorted future	“I’m more concerned about what’s to come. What will take place after my death? Who will be willing to look after my son?” (Pn.7) Another participant said: “We compelled him to marry one of the family’s daughters so that he would have a spouse and kids who would look after him later on.” (Pn.14)
		Caring, a permanent concern of the family	“I hope we find out when this suffering will end. Regardless of our precautions, the disease will come back and devastate the patient. It hurts us greatly that we must constantly be cautious and can no longer enjoy a normal life. Following schizophrenia, nothing is the same as before, leaving the family in constant sorrow.” (Pn.1 and 5)
		Self-sacrifice, the essence of schizophrenia caring	“Following the surgery, I remained in the hospital for a few days. Upon my return home, peace was not present. Neither my spouse nor his mother could assist since my stepfather is blind and requires care. That’s the reason I didn’t take a break, even post-surgery. I felt a lump in my chest. Following the operation, my hand became puffy. The physician mentioned that it’s due to your lack of rest following the surgery. ” (Pn.10)

Theme: Putting the broken pieces of life together

This theme presents the strategies that the participants used to cope with challenges caused by Schizophrenia in the context of family. While some of these strategies were effective in helping families resolve problems and endure the changes caused by the disease, other strategies were less effective. Instead, it can potentially worsen the existing situation and make life more difficult.

Sub-theme 1: Ignorant confrontation

As clinical symptoms appeared and the disease’s nature remained uncertain, the coping strategies employed by family members in response to the symptoms were unhelpful and detrimental. Coping strategies differ according to the nature of the symptoms and how family members perceive them. By implementing these actions, the family members sought to restore patients to their previous lives. As time progressed, these actions intensified the symptoms and deteriorated the patient’s state. This sub-theme included three categories, including “Paradoxical reactions”, “Conflict with psychotic patient”, and “resorting to superstition”.

Category 1: Paradoxical reactions

At the onset of the illness, family members were confused by the patient’s actions and initially responded in various ways to the unusual conduct. Some accepted the patient’s delusions, whereas others resisted them.

Family members attempted to ease the disease’s symptoms by advising the patient, motivating them to withstand the circumstances, and contrasting the patient’s life with those who are in poorer conditions. Some doubted the initial signs of the illness, deemed the patient’s actions a joke, and suggested the patient cease this behavior. The disease’s early onset manifesting as delusions, with no other clear symptoms, caused some participants to accept the patient’s delusions and view them as real. Symptoms that participants were more prone to accept included persecution delusions, beliefs of infidelity, and delusions related to magic.

Category 2: Conflict with psychotic patient

When symptoms of psychosis were linked with violent behavior and damage to property, some participants retaliated, threatened, or engaged in arguments with the patients. These behaviors demonstrated the alienation of families with symptoms and signs of schizophrenia and other psychotic disorders.

Indeed, the patient’s violent behavior aroused hostility among those nearby, resulting in mutual hostility and conflict. Everyone who was unaware of the disease’s symptoms did not think that these destructive actions were a result of the disease and posed a risk to the patient due to these actions.

Category 3: Resorting to superstitions

The family fell into the trap of superstition as they attributed the symptoms of illness to supernatural causes. Consequently, they not only invested money but also invested considerable time seeing shamans, so frequent visits to shamans could aggravate the patient’s symptoms or delay the treatment process. The families adhered to the instructions of prayer writers. Many families turned to traditional non-medical remedies after realizing they couldn’t manage the patient’s symptoms. They believed that the patients’ symptoms were caused by jinn or magic, so they consulted a shaman to alleviate the symptoms prior to seeking medical care. The impact of superstitions is so significant that even years post-diagnosis and while the patient is undergoing treatment, many families continue to consult prayer writers.

Sub-theme 2: Schizophrenia acceptance process

This subtheme highlights the difficulties faced by family members of schizophrenia patients in accepting treatment. Nevertheless, the family had to overcome several challenges prior to agreeing to medical treatment. This sub-theme consists of four categories including, “Cultural barriers to the treatment”, “Surrender to medical treatment”, and “Post decision grief”, “Tolerating burden of medical treatment”.

Category 1: Cultural barriers to the treatment

There were various reactions from family members and relatives to patients’ admission to psychiatric hospitals. Some family members were dissatisfied with the patient’s admission to the psychiatric center and insisted on the patient’s discharge. This resistance was rooted in society’s cultural beliefs and limited perspectives of individuals near the psychiatric hospital. The main concern of family members and relatives was protecting the honor of their family and clan.

Category 2: Surrender to medical treatment

Over time, the family sought treatment as the symptoms of the disease worsened, the patient’s behavior became uncontrollable, and traditional treatments were no longer effective. Acceptance of treatment was based on the destructive nature of the disease to the patient’s behavior, feelings, thoughts, and insights, and the possibility of harming oneself or others under the influence of the symptoms. Typically, patients were admitted to a psychiatric center due to delayed medical intervention during the first psychiatric visit.

Category 3: Post decision grief

One of the difficult experiences that the participants mentioned was the occurrence of emotional reactions with the experience of the patient’s first hospitalization in a psychiatric center. With the admission of the patient to the psychiatric center, the families were immersed in a lot of negative and painful feelings such as heartbreak, panic, confusion, loneliness, worry and anxiety, mental confusion, etc. These experiences and reactions were so hard and painful for the families that some of them still shed tears remembering those moments, even after several years. While the patient was hospitalized, observing the improvement and reduction of symptoms throughout their stay provided family members with reassurance and optimism for recovery.

Category 4: Tolerating burden of medical treatment

The side effects of antipsychotic medications were one of the issues that caused challenges for families. The administration of psychotropic medications leads to numerous side effects including salivation, fluctuations in blood pressure, weight gain, constipation, seizures, confusion, and neurological issues, which have significantly increased the burden of patient care. Families would only pursue medical care if they noticed severe side effects like seizures, but did not take action for low-risk side effects like flushing, constipation, or weight gain.

Sub-theme 3: Restoring a chaotic context by human and non-human approaches

This subtheme highlights the endeavors of families to create peace and alleviate tension and stress within their family context. Conversely, some of the strategies employed within the family were constructive, while others were inactive and detrimental to patients, compromising their rights. This subtheme has four categories including “Effective approaches to stress management”, “Unethical approaches against a devastating nature”, “Appeal to spirituality”, and “Masking disappointment”.

Category 1: Effective approaches to stress management

The family attempted to soothe the strained environment as the patient’s symptoms reappeared and the aggressive and harmful actions escalated. One option was to place the patient in a psychiatric facility. Hospital admission serves to alleviate family strain and manage psychotic actions.

Another approach was to take the patient away from the conflict situation, prevent the recollection of distressing memories or incidents, and work to soothe the person affected by the patient’s aggression.

Category 2: Unethical approaches against a devastating disease

Some of the solutions implemented by families to regain the peace and security within the home were passive, ineffective, and lacked compassionate, undermining the patient’s dignity and infringing upon moral and human rights. Instances of these harmful strategies consist of chaining the patient, beating the patient, and trying to imprison the patient.

Other strategies involved lying, threatening to decline, and administering opiate substances (Taryak in Persian). This helped the patient relax initially, but as time passed, the addiction issue exacerbated to the family’s difficulties, leading to more chaos in their circumstances.

Category 3: Appeal to spirituality

One of the solutions that participants used to attain peace and alleviate stress was to turn to and engage with spirituality. Through prayer and seeking assistance from a higher power, they obtained deeper understanding of the issues and occurrences they faced and enhanced their capacity to withstand them. They prayed, hoped for a miracle, and searched for the remedy that would heal their shattered hearts and restore their hope for healing.

Moreover, participants from the Sistani ethnic group, or Shiite sect, pursued healing for their patients by means of prayers and oaths to imams, as well as involvement in religious ceremonies.

Category 4: Masking disappointment

The family’s desire for the patient’s death reflected their profound emotions regarding the painful life that the patient and their family had endured. Some participants were facing challenges with their living conditions and, in some instances, unhelpful measures to manage their patients’ mental health issues. They viewed the patient’s death and absence as the only way to rescue the family.

Sub-theme 4: Support seeking

Facing schizophrenia, a chronic, debilitating, lifelong illness, can lead families to disruption and loss of their financial, emotional, and support resources. By experiencing negative changes in the family situations, they try to compensate for the economic, psychological and emotional needs of the family and find supportive resources. This subtheme represented help-seeking efforts and included two main categories: “Seeking support in indigenous culture and tribal life” and “Seeking government support.”

Category 1: Seeking support in indigenous culture and tribal life

Support from the family members and even relatives is necessary to care for patients and follow the treatment process in the psychiatric centers. In Balochistan, family means more than just the nuclear family. In this region, families are as large as clans, tribes, and peoples who share common ancestry and genealogy. Therefore, the families tried to get support from other family members to cope with the situation.

In addition, the male heir and supporters related to the patient (including father, brother, wife, son, etc.) play an important role in patients’ decisions making. The heirship issue is based on the native culture and tribal life of this province, which plays a very prominent role in the Baloch ethnicity. The heirs must be involved in the patient’s treatment, and hospitalization in psychiatry depends on their permission. Heir refers to the patient’s paternal family. This is even more pronounced when the patient is male and has a wife from a different clan. The patient’s wife and her relatives are not allowed to admit the patient to a psychiatric hospital without the permission of the male heir.

Category 2: Seeking government support

Some families used to obtain financial support and a portion of their patient’s medical costs through government agencies. However, when seeking services from government agencies, families had to navigate complicated administrative channels and go through bureaucratic procedures to prove the patient’s illness.

Sub-theme 5: Escaping from stigma

One of the greatest psychosocial stresses faced by families of patients with schizophrenia is the stigma that results in patients and their families being discriminated against and ridiculed by those around them. Because of these unpleasant experiences, families try to cope with stigma in different ways. The coping strategies that each family uses to deal with the stigma vary depending on each family’s personal experiences, values, and level of commitment to the patient. This subtheme consists of two categories including “Conservatism” and “Self-imposed isolation”.

Category 1: Conservatism

This category refers to the use of the art of selective disclosure of disease information as a flexible coping strategy used by families to escape from the stigma. This means that the family has evaluated various situations and decided that secrecy, concealment, or honesty is preferable in that situation. They provide information to key family members and close relatives about the illness and whether they need financial, emotional, or other support. However, if they feel disrespected, discriminated against, or ridiculed, they may hide information about the patient’s illness and refuse to disclose it, or they may attribute symptoms to the patient’s nervousness and provide only limited information.

Category 2: Self-imposed isolation

Another strategy used by families to avoid stigma was to voluntarily reduce social relationships with those around them. They were constantly worried about revealing the truth about their family member’s mental illness and therefore limited their relationships with others, especially new people and friends.

Subtheme 6: Role restoring

Having a family member with schizophrenia changes the previous roles of the family and the patient, and the patient’s marked inability to perform some duties causes other family members to carry out the patient’s tasks. This subtheme refers to the family efforts to restore the roles. It consists of three categories including “Staying on the line,” “Accepting new roles,” and “Lifestyle changes in a new context”.

Category 1: Staying on the line

Due to the nature of schizophrenia, affected family members have lost many abilities and are unable to carry out activities such as communicating with others, working outside the home, and even personal matters. Because of this, some families are looking for solutions to help patients return to normal life.

Category 2: Accepting new roles

Changes in the family after a family member is diagnosed with schizophrenia lead them to accept the new roles, especially when the breadwinner of a family falls ill. In such cases, other family members have to learn new skills, such as learning sewing or needlework, in order to fulfill new roles and cope with new tasks. In addition, the family members try to fulfill the roles they had previously played, such as being a mother, loving offspring, and providing a calming environment for others.

Category 3: Changing lifestyle in a new context

Having a patient with schizophrenia has forced the family to assume the role of caregiver, in addition to their role as a family member, and they have faced many challenges over time. The challenges associated with assuming the role of a caregiver have led to lifestyle changes and even changes in where the family members reside with the patient to more effectively manage new roles.

Sub-theme 7: Lifelong caring

Patient care as an unavoidable task was one of the main concerns of the families and posed many challenges for them. This subtheme contains three categories including “Endless anxiety for an uncertain future”, “Caring, a permanent concern of the family”, and “Self-sacrifice, the essence of schizophrenia caring”.

Category 1: Endless anxiety for an uncertain future

For families of patients with schizophrenia, their future is of paramount concern. Families worry about the patient’s disability and their fate, and wonder who will care for the patient in the future. Who will bear the burden of this heavy responsibility?

Category 2: Caring, a permanent concern of the family

The family members considered caring for the patient as their permanent duty and were trying to adapt to this situation and follow the process of treatment and care of the patient regularly. Understanding the nature of the disease, the endless period of suffering, and the lack of a definitive treatment, raised concerns among the families and prepared them to care for the schizophrenic patient for the rest of their lives.

Category 3: Self-sacrifice, the essence of schizophrenia caring

Some family members ignored their dreams and ambitions for the patient’s recovery and sacrifice their own peace and comfort and even their dreams to take care of the patient and the whole family. Patient care requires considerable family energy and time, and as a result, family members invest much of their time caring for patient and do not have enough time to do other responsibilities or attend to their own and others’ needs.

Discussion

In this qualitative phenomenological study, the experiences of Baloch families contending with schizophrenia of a family member were explored. The first onset of symptoms was an unexpected, unordinary, and shocking experience for both patients and families. The study of Wiens and Daniluk [53] and Kilic & Saruc [30] showed that the first onset of schizophrenia was an unexpected and usually frightening experience for families and was connected with many emotional and life problems. They often did not know what to do and from whom they should ask help [30, 53]. In the present study, the family members attempted to return their lives to normal after recognizing the threat and confronting the disorder. According to the theory of systems, the concept of family balance means that systems that are aggravated or debilitated utilize balancing mechanisms to reestablish balance. Families attempt to deal with disturbing factors by reviewing family behavior chains and setting up balance mechanisms when disturbances occur [7]. In the present study, the families attempted to use different strategies to resolve the symptoms and return the patient to the previous state. These strategies included advising the patient, showing enmity and hostility with the patient, believing the patient’s psychotic statements and delusions as well as referring to prayer writers, and dabbling in superstitions [55]. Rose et al. [43] reported in a qualitative study that some families believed that a patient with schizophrenia could be encouraged to alter the behavior with reason and rationale [43]. Ozden et al. [4] in a qualitative study in Turkey showed that the delay in diagnosis affected the family members and could lead them to turn to violence towards the patient in an attempt to alter the patient’s behavior [4]. Also, according to the present study, families resorted to superstitions and relied on non-therapeutic remedies when confronted with schizophrenia in a family member. Possession by demons or evil spirits is one of the oldest etiologies proposed for physical and mental disorders. The idea of spirit possession and mental disorder relationship features a long history [39]. In Pakistan, Taiwan, and Africa, traditional and non-medical treatments are considered among the primary treatments for patients with schizophrenia. These traditional healers, who may be “sheikh”, “dervish”, or “pir” depending on their geographical area, perform various rituals such as reading the Quran, praying, beating the patient to expel the jinn from the body, etc., to heal the patients [3, 26, 56]. The study conducted on Canadian Arab Muslims also showed that the participants had a positive attitude towards informal religious services compared to formal psychological services [1]. The findings indicate that there is a cultural response to the manifestations of schizophrenia in families, and the use of herbal medicines at home, consultation with a spiritual person, and utilizing traditional remedies are the result of their interpretation of the patient’s unusual behaviors [39].

In the process of accepting schizophrenia, the family experienced the cultural barriers in accepting and treating the disease, which lead to harm to the patient. According to the systemic theory, schizophrenia is considered as an individual, family, social and cultural phenomenon that is influenced by cultural and racial factors [8]. In spite of turning to non-scientific remedies, superstitions and magic, families inevitably utilized medical treatments as symptoms worsened. The findings of McAuliffe et al. [35] showed that parents initially resisted accepting the diagnosis of schizophrenia and hospitalization, which caused a delay in starting appropriate treatment [35]. In Cairns et al.‘s [6] study, families asked for help from other family members to control the symptoms of the disease, but the continuation of the patient’s high-risk behaviors caused the families to suddenly assess family coping strategies under pressure. This caused them to seek help from mental health systems and admit the patient to emergency centers [6]. Based on the findings of Poonnotok et al. [37], the family with a member diagnosed with schizophrenia was attempting to return to normal life. They strive to adhere to the patient’s medication regimen and assume responsibility for the administration of their medications. Moreover, by improving the symptoms, the patient is encouraged to be more involved in taking their prescribed medications [37].

In the present study, families of patients used effective strategies in confronting the critical conditions of living with a patient with schizophrenia. In the study of Poonnotok et al. [37], parents attempted to alleviate the aggressive and violent behaviors of the patients and avoided confronting them, which would aggravate the symptoms. Also, by providing a calm and happy environment, providing fun activities and reducing stress within the living environment, they prevented the recurrence of their patient’s illness [37]. In Kilic and Saruc’s study [30], mothers with a child with schizophrenia, in uncontrollable conditions and with the possibility of hurting other people or property, confined the patient in a private room until transfer to the hospital. They also benefited from entertaining the patient with household chores, limiting staying outside and cutting off the Internet signal to avoid contact with the opposite sex [30]. Poonnotok et al. 37], showed that the seriousness of negative strategies such as physical restriction of the patient was higher in families that had a lower level of knowledge and education or who were in a lower financial group [37]. Another unethical strategy described in the present study was the use of opium to relax the patient, which is opposite to the findings of [37]. In their study, the families had found out in consultation with the psychiatrist that drug abuse causes the recurrence of disease symptoms and so prevented the patient from consuming drugs and kept them away from unhealthy environments and their access to drugs [37]. These differences are due to the local culture of the region, the proximity of Sistan and Balochistan province to Afghanistan, and easy availability of opium in this area. Also, in Poonnotok et al.’s study (2016) in Taiwan, abuse of alcohol and stimulants was common, which provoked the patient and aggravated the symptoms of the disease. However, in the present study opium was consumed, which is an opiate with sedating properties. Nevertheless, it debilitates the individual rationally and mentally, and aggravates the patient’s indifference [37].

Attempting to find a male support and heir of the patient, particularly by the spouses of male patients, was one of the findings that was affected by tribal culture and ethnicity in Sistan and Balochistan province. The findings of Hassan’s (2011) study in Somalia showed that the paternal family is responsible for patient care. The culture of family life in Somalia is also a clan-based social framework, and the larger family and clan play an important role in people’s lives. Moreover, in Somali culture, clan membership is determined by the descent of the father, and caring may be a collective process that involves the entire clan [37], which is consistent with the present study. Darling et al. [15] showed that ethnicity, like religion, has a decisive role in attitudes towards gender roles [15].

The families were also attempting to get services from government agencies. Chaffey et al. [9] stated that schizophrenia is a completely new experience for families and causes family confusion in patient care. Families are not able to deal with it alone, and for this reason, they look for assistance from accessible sources. They require receiving help from people around them and supportive systems to bring stability to their lives and meet their medical and patient needs [9]. In Stein et al.‘s [51] study, the family caregivers who were the patients’ mothers, were effectively trying to find ways to extend the patient’s dependence on the mental health system and decrease their dependence on the family, to prepare their sick member for the time when the parents will be unable to provide care [51].

In the present study, to cope with stigma, families used strategies such as conservatism and self-imposed isolation. Conservatism was achieved by sharing information about the disease with certain individuals and maintaining a strategic distance from others. Giving information in a targeted way was based on receiving financial aid and support or hiding the disease from people who did not benefit the family. Karnieli-Miller et al. [29] showed that family members had used the art of selective disclosure to avoid stigma. They weighed the advantages of the disclosure of information. Unpleasant experiences caused by the reaction of others to schizophrenia leads families to such behavior [29]. In the study of (Poonnotok et al. [37]), most of the participants hid their child’s illness from relatives and neighbors to avoid negative consequences [37]. Keeping up social distancing and reducing interactions with others was another way to control information in this study. Seeman et al. [45] also found that tradition, culture and access to education and health care contribute to the formation of public understanding of mental disorders [45]. Therefore, strategies to avoid stigma may be distinctive according to background factors such as socio-economic status, politics, religion, culture and media [48]. In the present study, the diagnosis of schizophrenia in a family member led to change in the whole family, imposing new roles and attempts to preserve the previous roles of some family members. Some studies in Malaysia and America showed that care for schizophrenia was associated with disruption in family roles and daily activities, social participation, employment status, as well as disruption in economic activity and financial problems for caregivers and families. Also, quitting a job, changing the way of working, or changing profession were also reported [11, 12, 51].

In the present study, the family members were trying to reintegrate the patient to their previous routine. They helped the patient be normal by communicating with others and doing activities outside the home. According to the studies by Stein et al. [51] and Chaffe et al. [9], family members focused on the patient’s remaining strengths in order to achieve a normal life. Some of the measures used by families to empower patients with schizophrenia included shopping, doing personal activities, cooking and helping with household chores, encouraging them to continue their education and communicating with others, as well as getting medicine from the drug store, monitoring the consumption of medicines by patients, doing banking [9, 51]. To take care of a patient with schizophrenia, family members in some cases had to change their lifestyle. The study by Corring et al. [12] and Poonnotok et al. [37] also reported that family caregivers may put their personal lives on hold and spend a lot of time fulfilling their new roles [12, 37].

In the present study, the future of the patients and the uncertainty of the future were constant and unchanging concerns for the families of patients with schizophrenia. Chan [10], Knock et al. [31], and Rose et al. [44] also reported similar findings [10, 31, 44]. In Rose et al. [43] study, the families considered the misery of schizophrenia so devastating that they felt a duty to take care of the patient. They were always worried about the future, drug therapy, daily activities such as work or being social [43]. Stein et al.‘s [51] study in Ohio detailed conflicting findings in that participants did not express any concern about the patient’s future. Because the mental health system was effectively involved in patient care. Over time, the families attempted to reduce the patients’ dependence on the family and prepare them for the time when they will be unable to take care of them and transfer this duty to the mental health system [51]. These contrasts demonstrate the availability and proper access of families and patients with schizophrenia to the services and facilities of the mental health system in the Stein et al. study [51].

Limitations

The present study was conducted on the Baloch ethnic group living in southeastern Iran, so generalization to other Baloch ethnic groups living in countries such as Afghanistan, Pakistan and others requires further studies of other cultural groups.

Conclusions

The diagnosis of schizophrenia in a family member leads to shock, disruption and challenge in the whole family. Confronted with schizophrenia, the family goes through different stages until they begin to use more essential and practical ways to cope with the disease and manage it. From diagnosis to coping is a distressing period for family members, so that without governmental and non-governmental support the risk of harm to the patients cannot be denied. Due to the influence of the culture of the region and the belief in supernatural causes for the disease, and the use of impractical solutions, the process of treating the disease is delayed and there is a possibility of unethical and inhumane measures being used. This may result in damaging and even the death of the patient. Subsequently, psychological and financial support, along with supervision of the treatment process of patients with schizophrenia and their families could be an indispensable part of the care of these patients.

Authors’ contributions

NH and FD did conception and design of the study, data analysis, and writing the manuscript. NH and FD and JF had a significant contribution to the text, data analysis and critical revisions of the manuscript. All authors read and approved the final manuscript.

Funding

This study was not funded.

Data availability

The data set analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the ethics committee of Iranshahr University of Medical Sciences with code IR.IRSHUMS.REC.1400.014. Obtaining informed consent from the participants and assuring them of their anonymity and data confidentiality was another ethical consideration. Participants determined the time, place and duration of the interview. The audio files were stored in a safe place in an encrypted file on the computer by the first author. The participants were free to withdraw from the study at any stage of the research.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.