‘I feel like the burden of the world is on my shoulders’: a phenomenological qualitative study on the life experiences of adult children of parents with schizophrenia

Abstract

Background

Studies investigating the experiences of adult children of parents with schizophrenia (ACPS) are limited, and no qualitative study examining this issue in Türkiye has been previously conducted. This study aimed to examine the life experiences of ACPS providing primary care.

Methods

This phenomenological qualitative study was conducted with 14 ACPS in acute clinics of a regional psychiatric hospital in Istanbul between March and August 2024. Data were collected through in-depth interviews and analyzed using Colaizzi’s seven-step analysis method.

Results

Data analysis revealed five main themes: (1) Difficult beginning of life, (2) Being a caregiver without receiving care, (3) Emotional storm, (4) Disruption of the flow of life, and (5) Coping. The study found that adult children who cared for their parents could not remember their childhood, had to grow up early without parents, and experienced violence. Adult children had difficulty carrying the burden of care, experienced various emotions at the same time, and care disrupted their lives. They were both using adaptive and maladaptive coping methods.

Conclusions

This study determined that ACPS experienced significant childhood stressors and difficulties providing care in adult life that changed the flow of their daily lives while challenging their ability to cope. Psychiatric nurses have essential tasks to support ACPS in coping with difficult life experiences and reducing their care burdens. They should inform ACPS about schizophrenia, regularly monitor their mental health, and implement initiatives that will protect or improve their mental health.

Clinical trial registration

Not applicable.

Introduction

Affecting about 24 million people worldwide (one in every 300 people), schizophrenia is a chronic mental disorder that causes deterioration of one’s emotions, thoughts, and behaviors, negatively influencing quality of life and functionality [1, 2]. It is one of the top ten diseases causing disability in individuals aged 15–44 [3] and causes significant stress for both patients and their families due to its relapsing nature, cognitive effects in patients, and severe social and medical costs [4].

Mental health services in Türkiye were established in 1980. They were based on a hospital-based model, which often includes treatment during episodes but does not include preventive and rehabilitation services [5]. The hospital-community balance model, in which mental health services are provided in primary care through community mental health centers and outpatient/inpatient clinics of psychiatric, general, and university hospitals, was first adopted in 2011 in Türkiye. As of 2020, the number of community mental health centers in Türkiye has reached 182, with a total of 3,573 beds in 12 psychiatric hospitals and 3,847 beds in general and university hospitals [6]. However, the transition to community-based services is still relatively new in Türkiye, and mental health services are still provided mainly through psychiatric hospitals [5].

Following WHO’s Mental Health Action Plan (2013–2020), community-based services have replaced hospital-based care. Therefore, family members have assumed the responsibility of providing care to those with mental disorders at their place of residence [7]. Due to deinstitutionalization and the increasing prevalence of mental disorders, the number of family members acting as primary caregivers for individuals with mental disorders has increased by 50–90%, with the majority of patients diagnosed with schizophrenia returning to their families after being discharged from the hospital [8].

Background

Primary caregivers spend an average of seven hours a day caring for a family member diagnosed with schizophrenia [9]. No hospital service can replace the family environment; however, home caregivers face significant physical, social, emotional, and financial burdens [10]. In addition to managing patients’ unexpected behaviors such as aggression and violence, caregivers assume multiple roles in the care of patients [8]. Although some studies indicate that the resilience of adult children of individuals with mental disorders is high [11, 12], there is consensus that providing care to such individuals negatively affects the mental health and quality of life of the caregiver [13, 14]. It has been reported that 83–95% of family caregivers of patients with schizophrenia experience a significant burden that reduces their quality of life and exposes caregivers and patients to various risks [15]. Schizophrenia diagnostic processes and the experience of caregiving, especially given the chronic nature of the condition, can create feelings of grief, loss, and depression, while putting pressure on family relationships [16]. In addition, caregivers experience anger, guilt, fear, hopelessness, sadness, and negative feelings and attitudes toward the patient [17]. On the other hand, there is evidence that patient outcomes of individuals diagnosed with schizophrenia improve with the care provided by family members. It is also known that improving caregivers’ emotional well-being can reduce medical expenses by reducing hospital readmissions and helping patients recover faster [18]. Therefore, a greater understanding of how family members perceive the caregiving role and their life experiences in caregiving is essential. Studies investigating the experiences of adult children caring for their parents with schizophrenia are limited [10, 14], and no qualitative study has been conducted on the life experiences of adult children of parents with schizophrenia (ACPS) in Türkiye. This study aimed to examine the life experiences of adult children providing care for parents diagnosed with schizophrenia.

Theoretical framework

This study is based on Family Systems Theory (FST) was developed by Murray Bowen, which views the family as an emotional unit [19]. According to this theory, families are systems in which every member’s actions have an impact on the family as a whole. Family members are interrelated, and the notion highlights how changes or pressures in one family member—like a mental illness—can have repercussions for the entire family. Chronic anxiety and behavioral patterns that occur in family or group relationships are outlined by the eight states that make up the FST. The eight states of FST include differentiation of self, emotional process, emotional cut-off, family projection, multi-generational transmission, nuclear Family Emotional System, sibling position, and triangling [20]. In the context of studying the life experiences of adult children of parents with schizophrenia, Family Systems Theory provides a useful lens for understanding how these children navigate their familial roles and relationships. It helps to explore how patterns such as differentiation, triangulation, and family projection shape their emotional experiences and coping strategies. This theoretical framework is valuable in analyzing the complexities of family dynamics when one or more members suffer from a severe mental illness like schizophrenia.

Methods

Design

This descriptive, phenomenological study abides by the Consolidated Criteria for Qualitative Research Reporting [21]. Husserl claims that descriptive phenomenology depicts people’s everyday experiences and the significance they hold for their loved ones [22]. Characterizing participants’ perceptions and experiences of a phenomenon is its main objective. By employing this methodology, the study sought to uncover the lived experiences of ACPS in order to comprehend their general beliefs and viewpoints.

Participants and setting

This study was conducted with 14 adult children of individuals diagnosed with schizophrenia who were receiving inpatient treatment in the acute clinics of a regional psychiatric hospital in Istanbul, Türkiye. Containing six male and six female acute psychiatric inpatient clinics, the hospital treated an average number of 40 patients and employed 14 nurses, each of whom treated an average number of 10 patients. The study’s sample was selected using purposive sampling, and data collection ended when data saturation was reached. In the phenomenological pattern, the most important factor in choosing study groups is whether or not the chosen participants have firsthand experience with the phenomenon being studied in all of its facets [23]. Thus, in order to meet the sample selection requirements, individuals had to: (1) were primary caregivers to a parent diagnosed with schizophrenia, (2) volunteered to participate in the study, (3) did not have a severe mental or physical condition that impeded communication, and (4) were 18 years of age or over. Those with a previous or existing medical condition that may impair cognitive function, as well as those who were providing care to patients diagnosed with alcohol/substance abuse or severe organic brain syndromes such as mental retardation, dementia, or delirium, were excluded from the study.

Research team

The researchers (TPS, GD) are psychiatric nurses with extensive clinical nursing experience who are experts in their field. They include an Associate Professor and an Assistant Professor (10–11). The study was carried out at a hospital where both researchers (ZD and AO) are currently employed as clinical psychiatric nurses. Every researcher received training in qualitative research and gained extensive experience with qualitative investigations and in-depth individual interviewing techniques. They also participate actively in the National Psychiatric Nurses Association of Türkiye, which is an association for psychiatric nurses.

Data collection

Individual, in-depth interviews were conducted between March and August of 2024 utilizing a Semi-Structured Interview Form and a Personal Information Form. At the beginning of the interviews, participants were asked to fill out information forms for the patients and their relatives (Tables 1 and 2). The Semi-Structured Interview Form comprised open-ended questions based on Bowen’s FST and scientific literature (Table 3) [12, 14]. The questions reveal how the parent’s diagnosis of schizophrenia and the caregiving experience of ACPS affect family dynamics, roles, experiences and coping strategies, as emphasized in Bowens’s framework. Firstly, the second and third researcher (ZD, AO) identified participants who met the sample selection criteria and contacted the adult children of hospitalized parents with schizophrenia by phone, providing information about the study; those who agreed to participate were then invited to the hospital for an interview. All interviews, lasting between 35 and 50 min each, were conducted by the principal researcher (TPS), who was experienced in interview methods and qualitative research. The principal researcher first explained the purpose of the study to the participants, and interviews were conducted in a safe and comfortable environment where participants could provide honest and impartial responses. Interviews were scheduled at hours requested by the participants and were conducted face-to-face in an interview room in which interviews would not be interrupted. All interviews were audio recorded with participants’ permission.

Table 1.

Participant characteristics (Caregiver)

Participant number	Gender	Age	Educational status	Marital status	Having child	Parent	Working status	Having health insurance	Economic status	Duration of caregiving	Presence of chronic disease
1	Male	38	High school	Married	Yes	Father	No	Yes	Partially enough*	13 years	No
2	Female	20	High school	Single	No	Father	No	Yes	Partially enough	25 years	No
3	Male	23	Bachelor’s degree	Single	No	Mother	No	Yes	Enough*	3 years	Yes
4	Female	23	High school	Married	No	Mother	No	Yes	Enough	2 months	No
5	Male	27	High school	Single	No	Mother	Yes	Yes	Partially enough	6 years	No
6	Male	35	Bachelor’s degree	Married	Yes	Father	Yes	Yes	Enough	26 years	No
7	Female	22	High school	Single	No	Mother	No	Yes	Enough	18 years	No
8	Female	24	High school	Married	Yes	Mother	No	Yes	Enough	8 years	No
9	Male	30	Bachelor’s degree	Single	No	Mother	Yes	Yes	Enough	5 years	Yes
10	Male	32	Bachelor’s degree	Married	No	Father	No	No	Enough	2 months	No
11	Male	30	Primary school	Single	Yes	Father	No	No	Enough	1 years	No
12	Female	31	High school	Married	Yes	Father	No	Yes	Enough	10 years	No
13	Female	45	High school	Single	Yes	Mother	No	Yes	Partially enough	9 years	No
14	Male	27	Postgraduate	Married	No	Father	No	Yes	Enough	12 years	No

*Means that income equals expenditure, and one can afford to spend. Individuals may sometimes be unable to afford their expenditures and are considered partially enough

Table 2.

Participant characteristics (Parents)

Participant number	Age	Gender	Educational status	Marital status	Having health insurance	Duration of illness	Received treatments	Duration of treatment	Number of hospitalizations	Presence of chronic disease	Living with caregiver
1	74	Male	Literate*	Married	Yes	13 years	Does not know	No treatment compliance	1	Yes	Yes
2	58	Male	High school	Married	Yes	25 years	Clonex, akineton, xeplion	16 years	10	No	Yes
3	43	Female	High school	Single	No	3 years	Does not know	One-month	1	No	Yes
4	45	Female	Primary school	Single	No	2 months	Does not know	2 weeks	1	No	No
5	52	Female	High school	Married	Yes	6 years	Misol, akinetone, neurodol	6 years	2	Yes	Yes
6	66	Male	High school	Single	Yes	26 years	Seroquel, akinetone, depot injection	26 years	10	No	Yes
7	47	Female	Literate	Married	Yes	18 years	Depakin	18 years	6	Yes	Yes
8	42	Female	Primary school	Single	Yes	16 years	Depakin, akinetone	16 years	10	No	Yes
9	51	Female	Primary school	Married	Yes	5 years	Does not know	One- year	4	No	Yes
10	57	Male	High school	Married	Yes	2 months	Does not know	One-month	1	Yes	Yes
11	54	Male	Illiterate	Married	Yes	1 years	Rexapin	10 days	1	No	Yes
12	61	Male	Primary school	Married	No	10 years	Does not know	7–8 months	2	Yes	No
13	63	Female	Primary school	Single	No	9 years	Does not know	9 years	2	Yes	No
14	54	Male	Primary school	Married	Yes	18 years	Klonex, neurodol, solian, akineton, laroxyl	18 years	15	No	No

* Not completed any level of schooling but can read and write

Table 3.

Semi-structured interview form questions

1. What are your thoughts and feelings about your parent’s diagnosis of schizophrenia?

2. What are your experiences and challenges in your caregiving role?

3. What are the effects of your parent’s illness and caregiving responsibility on your life (physically, mentally, and socially)?

4. What are your experiences of coping with the challenges you face?

5. What would you say about the benefits or opportunities of being a caregiver?

6. Are there any other areas that we have not covered that you would like to discuss?

Data analysis

Two separate researchers (TPS, AO) performed the data analysis after verbatim transcriptions of each individual interview were made. Collaizi’s seven-digit descriptive analysis method was used to assess the data (Table 4) [24]. An illustration of the data analysis procedure is shown in Table 5.

Table 4.

Collaizi’s 7-digit descriptive analysis steps

Phase	Steps
1	The participants’ statements are read repeatedly to understand the meanings and experiences attributed to the phenomenon,
2	Essential expressions that are directly related to the phenomenon are selected,
3	These important expressions are analyzed, meanings are formulated,
4	The formulated meanings are grouped into subthemes, themes, and categories,
5	The results are combined with rich and comprehensive life experiences,
6	The basic conceptual structure of the phenomenon is defined, and
7	The findings are confirmed by comparing the results obtained by interviewing some participants again and the participant’s own experiences.

Table 5.

Themes and sub-themes reflecting experiences of adult children of parents with schizophrenia

Main themes	Sub-themes	Meaning unit
Theme 1: Difficult beginning of life	Sub-theme 1: Having to grow up early	“An ill mother, a little brother—caring for them was very difficult. I am 24, but I feel like 45. When I compare myself to my friends, there is a huge difference. I was not able to live my childhood. I had to drop out; my father didn’t send me to school.” (P8)
	Sub-theme 2: Growing up without parents	“So, my mother was always sick; how could I tell? When I returned from work, she never treated me like a child; I never felt that warmth. I didn’t understand, which was very painful because I never felt her love. That illness in her eyes, always lying down sick. I never received love from my mother.” (P8)
	Sub-theme 3: Being exposed to violence	“The worst was that he beat my mother in front of me and broke her rib. I cannot erase this, never. I cannot forget that violence in any way. I mean, no one suffered in a marriage like my mother. There was always violence in some way.” (P12)
Theme 2: Being a caregiver without receiving care	Sub-theme 1: Care burden	“My body is aching and fatigued, and I feel the world’s burden is on me. I do not want to get out of bed sometimes. Fatigue, exhaustion, as if the whole burden is on you, that feeling never disappears.” (P12)
	Sub-theme 2: Difficulties of life with schizophrenia	“The most difficult point is that my father is still putting a spoke in our wheel while we are still trying to continue our lives. I mean, him not letting my brothers study, my brothers not growing up healthy, him disturbing the neighbors, refusing to take his medications, yelling, damaging things in the house, self-harming. The fact that we have to deal with it constantly.” (P14)
	Sub-theme 3: Continuing to get stronger	“… I think I know myself better. … maybe if I can start a family one day, I can protect my family. Life has shown me most of the difficulties and the darkest parts. When I look forward, I am saying that I can take much responsibility for things. Responsibility is difficult; it seems simple, but it is hard.” (P9)
Theme 3: Emotional storm		“I feel anger and sadness the most. You know, you get used to sadness somehow, but the anger does not disappear. When I look back on my life, at the fact that I worked more than my friends and struggled more, I think maybe today my father’s illness caused our despair.” (P14)
Theme 4: Disruption of the flow of life	Subtheme 1. Impact on family life	“… because now I am looking at it, it reflects on my children and my husband whether I want to. Something happens between us; I get angry at the slightest thing. They understand that I have problems with my father. Well, my kids say he is your father; have a little patience, Mom. I try not to scream in front of my children. However, sometimes it comes to an edge. Sometimes, my voice goes up like that, but it is not something I can help. My tolerance has dropped.” (P12)
	Subtheme 2. Impact on working life	“It affected my working life because my mind was constantly there. You are powerless when you live with a question mark in your head. You cannot be efficient; for example, I was uncomfortable; you cannot concentrate on work when you are uncomfortable.” (P1)
	Subtheme 3. Impact on social life	“Of course, it affects my social life. When I make plans with my friends, I get a phone call, and the whole plan disappears. My father might have hurt himself. He could have damaged something at home, or he could have hurt my mother when he was trying to prevent my mother from doing what she wanted to do during an episode. In other words, I can say that I have become a 75% stay-at-home person.” (P14)
Theme 5: Coping	Subtheme 1. Adaptive coping	“When I am angry, my wife is very understanding and greatly supports me because she knows my father well. If it was not for her support, maybe I could be worse. That is why my wife is spending more time with our children, and I try to. We are trying to catch up somehow; I am trying not to show it. Even if I show it, we talk about things after putting the kids to sleep; this is how I open myself up. When I get bored, I walk with my wife and distract myself.” (P12)
	Subtheme 2. Maladaptive coping	“I constantly ate for a while. A lot. A lot of junk food. I ate as I got angry. Ate more with anger. And I weighted 90.” (P12)
	Subtheme 3. Suggestions for coping	“To rest at least the people who care for such patients, the government should provide caregiver support once a week or one week to ten days every month. They have such capability. What happens when the health of the caregiving person goes bad? Who will take care of these patients? Do hospitals have the capacity for all these patients? Adequate number of caregivers to take care of these patients?” (P13)

Ethical considerations

Istanbul Arel University’s Ethics Committee granted ethical approval (No: 04) on March 1, 2024, and the institutions where the study was carried out granted institutional permission. The study also followed the Declaration of Helsinki. Participants were informed that the interviews would be audio recorded and gave written and verbal informed consent to participate in the study. In case a participant experienced intense emotions during the interview, the first researcher, an expert psychiatric nurse experienced in qualitative research and interview methods, guided the interview using appropriate interview and communication skills. Additionally, participants were told that their identities and responses would be kept private, that they could discontinue participation at any time, and that the authors would use fictitious names for participants. Participants were also informed about agencies where they could receive psychosocial support. After the interviews, the researcher provided psychoeducation on relevant topics specific to each participant.

Rigor

To ensure the trustworthiness of the findings, the study adhered to Lincoln and Guba’s criteria for rigor: credibility, transferability, dependability, reflexivity, and confirmability [25]. Credibility was achieved by incorporating direct participant quotes to authentically represent their lived experiences. Member checking was not applicable due to the sensitive and emotional nature of the topic; however, rich and detailed verbatim quotations enhanced the truthfulness of the interpretations. Transferability was supported by providing a clear description of the study context, participant characteristics, and sampling strategy. This allows readers to determine the extent to which the findings may be applicable to other contexts. Dependability was ensured through independent initial coding by two researchers (TPS and GD), who also reviewed the accuracy of the transcripts against the audio recordings. Coding discrepancies were resolved through discussion until consensus was reached, ensuring consistency in data interpretation. Reflexivity was maintained by the researchers’ ongoing self-awareness of their preconceptions and potential biases. Reflexive journals were used during data collection and analysis to critically examine how the researchers’ backgrounds and experiences might influence the study. Confirmability was established by maintaining an audit trail, including raw data (transcripts), coding decisions, analytic memos, and theme development documentation. The use of direct quotes and joint analysis by multiple researchers helped to reduce subjective bias and ensure that the findings were grounded in the data rather than in the researchers’ assumptions. Additionally, culturally sensitive participant statements were translated by a bilingual expert familiar with both linguistic and cultural nuances, further supporting the neutrality and transparency of data interpretation.

Results

Participant characteristics (caregivers and parents) are shown in Tables 1 and 2. The main themes and subthemes are shown in Table 5.

Theme 1. Difficult beginning of life

Subtheme 1.1. Having to grow up early

Most participants who had parenteral mental disorders in childhood stated that they could not remember their childhood, were forced to become adults at an early age, and felt like the parents of the house. They also stated that they always struggled and often had to leave school early to work and care for their siblings. One participant stated:

“I grew up with this: when you open your eyes to what’s happening at home, there’s always a problem, particularly in the evenings. We’re not like other people and are never lucky like them. While others struggle for their children and are making plans, we have already started life two steps behind.” (P14).

Another participant explained that although she was young, she felt tired and old because of what she had been through. She could not relate to her peers and could not continue with school:

“An ill mother, a little brother—caring for them was very difficult. I am 24, but I feel like 45. When I compare myself to my friends, there is a huge difference. I was not able to live my childhood. I had to drop out; my father didn’t send me to school.” (P8).

Subtheme 1.2. Growing up without parents

The majority of the participants stated that they grew up deprived of maternal and paternal love, felt insecure, found themselves in broken families, or were raised by other people. One stated that family members mistreated her because she did not have a mother:

“My grandmother raised us. I was living with my grandparents, uncles, aunts-in-law. They were so hard on me because I didn’t have a mother. I was always doing the chores, and they were pushing me around, like ‘who will do these if you go to school?’. We experienced all kinds of oppression; if you don’t have a mother, you have no one—no father, no sibling; you grow up constantly being suppressed.” (P8).

In addition, participants said that while growing up, their parents could not be with them at all during specific periods, and at a young age, they could not make sense of the hospitalizations of their parents. Some said that their parents never treated them warmly and did not show compassion when they were sick or came home from work, which was very painful. One participant put it this way:

“So, my mother was always sick; how could I tell? When I returned from work, she never treated me like a child; I never felt that warmth. I didn’t understand, which was very painful because I never felt her love. That illness in her eyes, always lying down sick. I never received love from my mother.” (P8).

Subtheme 1.3. Being exposed to violence

The majority of the participants described the violent situations they had been exposed to throughout their lives. Some stated that their fathers with schizophrenia were violent to them as a child, particularly to their mothers. In contrast, others said that their mothers with schizophrenia had experienced violence from their fathers in the past and still did in various ways. One stated that they witnessed the murder of their mother at the hands of their father when they were only eight years old. Another emphasized that she was haunted by witnessing her mother being beaten by her father:

“The worst was that he beat my mother in front of me and broke her rib. I cannot erase this, never. I cannot forget that violence in any way. I mean, no one suffered in a marriage like my mother. There was always violence in some way.” (P12).

One participant mentioned that they were subjected to violence in the environments in which they were raised by others (other relatives) due to a broken family:

“We witnessed much domestic violence with my brother. I mean, we saw such violence and experienced all kinds of oppression. I had an uncle, my father’s relatives, my father’s uncle—they beat me so that I would not see my mother because she was sick.” (P8).

Theme 2. Being a caregiver without receiving care

Subtheme 2.1. Care burden

Participants expressed that it was difficult being a caregiver; they felt burdened, compromised their own lives, and devoted themselves to their parents. One said:

“There’s such a burden, as if the grief of all the people in the world is only on me, and I’m so exhausted; it doesn’t go away, and it feels like I’m choking. Even if I cry, it’s not enough.” (P7).

Participants also stated that they tried their best to care for their parents because it was their duty. One stated:

“In our culture, our religion, the one who cares for their parents without complaint goes to heaven. That’s why you take care of them. I have eight siblings, and everyone cared for him [my father], but I did the job because he stayed with me. Not even once did we oppose or say a word. Of course, I would take care of my mom and dad. Everyone would…do their best to care for their parents so they can be worthy.” (P1).

They added that, over time, they came to terms with their parent’s illness; however, despite their sustained efforts, they experienced a gradual emotional numbing and sense of resignation. This shift did not indicate indifference but rather reflected a form of protective detachment developed through repeated unmet expectations. One said:

“After a while, I feel that I’m talking for nothing. I’ve talked so much for years. You just accept it. My mother won’t understand; she’ll pretend that it’s okay. My mother would look at me blankly. After a while, you realize that your efforts will only lead to so much. It’s like rowing in vain; you try so hard but don’t get a response from the other person.” (P3).

Subtheme 2.2. Difficulties of life with schizophrenia

The majority of participants stated that their parents were diagnosed with schizophrenia at a late stage due to lack of information about the disease and that they had difficulty coping with the symptoms. They said that their parents made endless requests during exacerbation of the disease and that they had difficulty meeting such requests, experienced sleep problems, and felt physically tired. Some mentioned that their parents had difficulty coping with treatment incompatibility when they experienced medication rejection or negative side effects. They commented:

“The most difficult part is that my father is still putting a spoke in our wheel while we are still trying to continue on with our lives. I mean, him not letting my brothers study, my brothers not growing up healthy, him disturbing the neighbors, refusing to take his medications, yelling, damaging things in the house, self-harming. The fact that we have to deal with it constantly.” (P14).

Subtheme 2.3. Continuing to get stronger

Participants expressed that they developed a sense of responsibility related to the role of caregiver, that such responsibilities had matured them, that they had gained life experience and self-awareness, and that they felt empowered. One participant spoke of how they might confront problems when they had their own family:

“I think I know myself better…. Maybe if I can start a family one day, I can protect them. Life has shown me the greatest difficulties and the darkest parts. When I look forward, I can say that I can take great responsibility for things. Responsibility is difficult; it seems simple, but it is hard.” (P9).

Theme 3. Emotional storm

The majority of the participants stated that being a caregiver caused significant psychological fatigue; they felt exhausted and anxious, constantly living in fear about what would happen to their parents. They claimed not to enjoy anything, to have difficulty sleeping, to be constantly anxious and depressed, to feel guilty when they wanted to do something or were unwilling to do anything at all, and to be preoccupied with thoughts of their parents. One said that although he initially accepted his parent’s disease, he eventually came to feel helpless and angry:

“I feel anger and sadness the most. You know, you get used to sadness somehow, but the anger does not disappear. When I look back on my life, at the fact that I worked more than my friends and struggled more, I think maybe today my father’s illness caused our despair.” (P14).

One stated that she thought about her parent’s illness constantly and felt guilty for not doing enough:

“It mentally affects me badly—insomnia, overthinking, low moods. You don’t feel like doing much, or you feel guilty. For example, there are many things to do in Istanbul, but you feel guilty when you go somewhere to hang out. Your mind is elsewhere. So, you cannot be fully yourself.” (P9).

Theme 4. Disruption of the flow of life

Subtheme 4.1. Impact on family life

Participants stated that their own family life was affected due to their parents’ disease, that they could not devote adequate time to their children, and that their spouses were also psychologically negatively affected. They explained that their minds were always on their spouses, that they had to stay at home, that their children also grew up in a troubled environment, and that they were worried about whether their parents would harm their children due to symptoms of the disease. They mainly were trying to protect their children from their parents, and the grandchildren they lived with were also affected by their parents’ delusions or hallucinations. In addition, they stated that they could not take charge of their own life due to their parents’ disease. One stated that she sometimes deflected the tension and nerves she experienced onto her spouse or children:

“Now that I look back, it reflects on my children and my husband whether I want it to or not. When something happens between us, I get angry at the slightest thing. They understand that I have problems with my father. My kids say, ‘he is your father; have a little patience, Mom.’ I try not to scream in front of my children. However, sometimes I slip over the edge. Sometimes I raise my voice, but it’s not something I can help. My tolerance has dropped.” (P12).

Subtheme 4.2. Impact on working life

Participants stated that they had difficulty taking time off of work to care for their parents or that they could not work a regular job; their minds were always on their parents, and they had difficulty concentrating. One participant stated:

“It affected my working life because my mind was constantly there [at home]. You’re powerless when you live with uncertainty. You cannot be efficient; for example, I was uncomfortable. You cannot concentrate on work when you’re uncomfortable.” (P1).

Subtheme 4.3. Impact on social life

Most participants stated that they had no social life; felt overwhelmed, bored, and trapped; and could not travel with their spouses. One explained that when he made plans, they were often canceled, and when he was out and received a phone call, worst-case scenarios came to mind:

“Of course it affects my social life. When I make plans with my friends, I get a phone call, and the whole plan disappears. My father might have hurt himself. He could have damaged something at home, or he could have hurt my mother…during an episode. In other words, I can say that I have become a 75% stay-at-home person.” (P14).

Theme 5. Coping

Subtheme 5.1. Adaptive coping

The majority of participants stated that they accepted their parents’ disease and that the better their parents felt, the better they felt. They mentioned that the efforts they put into their parents’ recovery and the recognition of such efforts were supporting factors. They also stated that they coped with the process through self-care activities such as walking on the beach, listening to music, prayer, exercise, or television. One participant said that his wife was his biggest supporter:

“When I’m angry, my wife is very understanding and supports me because she knows my father well. If it wasn’t for her, maybe I would be worse. That’s why my wife spends more time with our children, and I try, too. We’re trying to make things right somehow; I’m trying not to show it [my struggle]. Even if I do, we talk about things after putting the kids to sleep; this is how I open myself up. When I get bored, I walk with my wife to distract myself.” (P12).

Subtheme 5.2. Maladaptive coping

Some participants stated that being a caregiver was very challenging and that they needed support. In addition to the majority of the participants reporting excessive smoking, one participant was taking unprescribed antidepressants, and one mentioned being overweight due to excessive eating:

“I constantly ate for a while. A lot. A lot of junk food. I ate as I got angry…. And I weighted 90 kilos.” (P12).

Subtheme 5.3. Suggestions for coping

Participants stated that they needed psychological support to cope with the difficulties posed by being a caregiver, that systemic facilities should be provided to facilitate hospital admissions, and that they expected caregiver support from the government. One stated that the government should provide an outside caregiver on some days to protect the primary caregiver’s mental health:

“To give a break to the people who care for such patients, the government should provide caregiver support once a week, or one week to ten days every month. They have such capability. What happens when the health of the caregiving person deteriorates? Who will take care of these patients? Do hospitals have the capacity?” (P13).

Discussion

To the best of the authors’ knowledge, this study is the first to examine the life experiences of ACPS in Türkiye. It determined that participants had significant stressors during their childhoods and that due to their parents’ disease, parental and childhood roles were reversed, forcing them into a caregiving role for both their parents and their siblings. Bowen’s theory also emphasizes how the traditional parent-child role dynamic can change when a parent has schizophrenia and explains how adult children can take on parenting or caregiving roles early in life, leading to role confusion, boundary changes, and a shifting sense of responsibility [20]. Children of individuals with mental disorders are forced to assume responsibility and care for themselves at an early age [26, 27]. They describe the environment they live in as stressful, chaotic, unstable, and fragmented [13]. In the current study, some participants also stated that they were subjected to physical and mental violence between family or relatives since they did not have parents. In the current study, participants’ average duration of caregiving was 9.7 years, but more devastating effects may have occurred for individuals experiencing extended caregiving or prolonged exposure to adverse life events. Previous studies have also found that such individuals are subjected to physical and sexual violence as children [13, 28]. Exposure of such children to violence brings with it the necessity of coping with trauma. Given that children may not yet have sufficient coping methods or good role models, coping with such trauma can weaken the strength of the self [29].

Participants also expressed that the burden of care was heavy and that life with someone suffering from schizophrenia was exhausting. Previous studies have also found that a heavy care burden, treatment incompatibility, and patients’ bizarre thoughts or attempts to harm themselves or their environment cause exhaustion in caregivers [4, 12]. In the current study, participants reported being exposed to this burden early in life, perhaps because most had been caring for their parents for an extended period of time (mean 9.7 years). Those who reported caregiving responsibilities for a shorter period (two months) stated that although their parents had symptoms of the disease for a very long time, it was diagnosed at a later stage, and they were still exposed to devastating effects. It is therefore essential that such caregivers be given adequate support. In addition, the current study determined that mental health professionals did not sufficiently inform ACPS about the diagnosis and treatment of schizophrenia. Half of the ACPS stated that they did not know about their parents’ medications (Tables 1 and 2). Previous studies also concur that those who provide care for patients with schizophrenia have limited knowledge of the disease, and that patients’ relatives lack information and skill training related to the disease [14, 30, 31]. The current study’s results suggest that ACPS providing primary care should be properly informed about the nature of schizophrenia, its symptoms, prodromes or persistent symptoms, the importance of medication and treatment, and coping with possible side effects. In this context, structured and evidence-based psychoeducation, as well as mental and social skills training sessions, can be provided to ACPS [32]. In addition, ACPS should be informed about the services of institutions and community mental health centers they can consult for support in their daily lives and the rehabilitation of their parents. These findings should also be considered within the cultural context of Turkey, a society influenced by collectivist values, strong intergenerational bonds, and religious teachings. In many Turkish and broader Muslim-majority communities, caring for parents is not only a familial obligation but also a religious and moral duty deeply rooted in Islamic beliefs. Participants in this study emphasized their commitment to caregiving as a sacred responsibility, often driven by the idea that those who serve their parents without complaint will be rewarded in the hereafter. Similar cultural dynamics were observed in a study from Oman, where family members caring for individuals with schizophrenia also emphasized their religious motivation and duty-bound roles, despite experiencing high emotional strain and minimal formal support [33]. This deep sense of filial piety and duty, while culturally and spiritually meaningful, may intensify the caregiving burden by discouraging help-seeking or boundary-setting. As a result, emotional and informational support tailored to these cultural dynamics is essential in effectively addressing the needs of ACPS in Turkey and comparable cultural settings.

Participants also described experiencing many conflicting emotions while acting as caregivers for their parents. Bowen also mentions the interdependence of family members in his theory and emphasizes that changes in one member’s emotional or psychological state can affect the others [20]. Thus, parental schizophrenia affects not only the individual with the illness but also the psychological and emotional well-being of adult children. Similarly, it has been found that children with parental mental disorders experience anger and negative emotions when caring for a parent, as their own needs are not met, often resulting in sleep problems or feelings of guilt, shame, exhaustion, fatigue, boredom, fear, tension, or anxiety [17]. Parents who provide care for patients with schizophrenia experience similar feelings [10, 34]. The support and cooperation of treatment centers and mental health professionals can be key initiatives in protecting the mental health of these individuals [28]. Some ACPS participating in this study stated that they needed mental support, and all participants thanked the researcher for the interview, stating that sharing their experiences felt good. Taking this into consideration, the health system should offer both group and individual support/therapy to such individuals.

The ACPS participating in this study stated that providing care for their parents affected their family, work, and social lives, with almost all stating that they had no social lives. Similar studies have noted that children of individuals with mental disorders become alienated from their peers [12] and experience problems establishing healthy relationships with family members [17]. Bowen’s theory also examines how family members communicate and interact [20]. Having a parent with schizophrenia can affect communication patterns, conflict resolution, and emotional exchanges within the family. ACPSs’ difficulties in communicating with their parents may also contribute to feelings of isolation or stress. In the current study, some participants stated that they experienced problems in their relationships with their spouses or children, sometimes leading to their divorce. ACPS do not receive adequate care early in life, have trouble connecting with others, and experience difficulties in long-term relationships [10, 34]. One participant in the current study stated that they were considering marriage but did not know whether or not to share the schizophrenia diagnosis of their parent with their partner. Mental disorders are often taboo and can be hidden from social circles [12]. Individuals who bear the burden of care may face stigma and rejection, causing them to withdraw inwards, with ACPS in particular experiencing such stigma, impairing ACPS’s coping methods and decision-making processes [35, 36]. In the Turkish context, as in many other Muslim-majority societies, mental illness is often viewed through a lens of shame, secrecy, or even spiritual causation. Schizophrenia, in particular, can be stigmatized not only by the broader society but also within extended family networks, leading individuals to conceal the diagnosis to protect their family’s reputation. This pressure to hide a parent’s illness can result in deep emotional conflict, especially during key life events such as marriage or social integration. Similar findings were reported by Al-Sawafi et al., who found that caregivers in Oman often concealed the diagnosis of their ill relatives due to stigma and fear of social judgment [33]. These culturally specific responses to mental illness, including stigma and concealment, shape both the relational patterns and help-seeking behaviors of adult children of individuals with schizophrenia in Muslim-majority contexts.

A female participant in the current study stated that she married someone 20 years older at a young age since she received help from him, perhaps due to her feelings of helplessness and inability to make the right decision. Developing children who live with their parent’s mental disorder often have difficulty making decisions about important issues in their lives, sometimes leading to unhealthy choices [12]. Such findings, especially related to such at-risk children, demonstrate the importance of the provision of mental health services. Female participants in the current study also mentioned that the process of dealing with their parents’ illness negatively reflected on their children, and one participant stated that she was concerned about her child’s development. Male participants, on the other hand, said that they thought about their parents or spouses while at work and tried to protect their spouses from their own struggles. Such findings are striking in revealing how participants are affected by gender differences and the roles attributed to women and men in Turkish society.

The current study also shows that ACPS adopt both adaptive and maladaptive coping methods. Caregivers of individuals diagnosed with schizophrenia use coping mechanisms such as acceptance, problem-oriented coping, social support, cognitive restructuring, prayer, and information acquisition [14, 30]. Bowen’s framework also helps us understand how adult children adapt to their parents’ mental illness, whether they develop strategies to maintain balance in the family system, and how these strategies affect their psychological health and family relationships [20]. According to Upasen & Saengpanya, methods such as preoccupation with work, sharing problems with relatives, and praying are often used to cope with compassion fatigue [37]. Participants in the current study also stated that such methods helped them to cope, with some recommending systemic arrangements of the government for care and the provision of caregiver and mental support. The literature also recommends that family members providing care for individuals diagnosed with schizophrenia should receive financial support, mental support, and support in caregiving skills [4, 31].

Strengths and limitations

Due to the nature of qualitative studies, the findings obtained from this study are limited to the participants’ experiences. Six female and eight male participants participated in the study. Since the experiences of female caregivers have been frequently examined in previous studies [30], the ratio of women to men in such studies is essential in revealing the diversity of ACPS’s life experiences. The primary researcher conducting the interviews in this study did not work in the hospital in which the study was conducted and had no previous contact with the patients or their children. While this allowed participants to express themselves comfortably, recounting lived events to a stranger may have influenced participants’ responses. Another limitation is that the age of onset of illness of participants’ parents, one of the demographic factors that may influence children’s experiences, was not collected. However, this study is the first to target this population in Türkiye and supports the data in the literature.

Conclusions

According to this study, ACPS had to grow up at an early age, had to drop out of school and begin working, were exposed to violence, or witnessed their parents’ violence. They assumed a heavy burden of care without receiving care themselves, and they experienced problems in their families, homes, social lives, and working lives. Participants experienced conflicting emotions and dilemmas due to these experiences, adopted both effective and ineffective coping methods, and required social, financial, and mental support while providing care. Future studies investigating the effectiveness of interventional studies designed to strengthen the coping skills of ACPS, as well as multidisciplinary studies conducted with mental health professionals, are recommended.

Relevance statement

Psychiatric nurses play an essential role in supporting ACPS in coping with difficult life experiences and reducing their care burdens. Clinical psychiatric nurses should inform patients’ relatives about schizophrenia and available community mental health centers during discharge training. Community mental health nurses should conduct psychoeducation and psychosocial skills training related to schizophrenia for ACPS. The mental health issues experienced by ACPS are alarming, and ACPS should receive mental health support, as well as group and individual therapy. In addition, ACPS should be informed about effective coping methods in order to increase their resilience and combat stigma. Adults with mental disorders should monitor their children’s mental status, explain their disease to them in an age-appropriate manner, and support them in acquiring necessary life and social skills.

Abbreviations

WHO

World Health Organization

ACPS

Adult children of parents with schizophrenia

FST

Family Systems Theory

Author contributions

We declare that all authors meet the criteria for authorship and have approved the final article, and that all those entitled to authorship are listed as authors. TPS: Conceptualization, Methodology, Formal analysis, Investigation, Data Curation, Writing - Original Draft, Writing - Review & Editing, Visualization, Supervision. ZD: Conceptualization, Methodology, Investigation, Data Curation, Writing - Original Draft, Writing - Review & Editing, Visualization. AÖ: Conceptualization, Methodology, Investigation, Data Curation, Writing - Original Draft, Writing - Review & Editing, Visualization. GD: Conceptualization, Methodology, Formal analysis, Investigation, Writing - Original Draft, Writing - Review & Editing, Visualization, Supervision.

Funding

No financial and material support was taken for this study.

Data availability

The data (in Turkish) used and/or analysed during the current study are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

Ethical approval was obtained from the Ethics Committee of İstanbul Arel University Ethics Committee (No: 04) on 01.03.2024, and institutional permission was obtained from the institutions where the study was conducted. The study also followed the Declaration of Helsinki. Participants were informed that the interviews would be audio recorded and gave written and verbal consent to participate in the study.

Consent for publication

Participants gave informed written consent for participation in the study and publication of the results.

Competing interests

The authors declare no competing interests.