Recovery journey of schizophrenic patients in Chinese culture:A Qualitative Study of Experiences

doi:10.21203/rs.3.rs-2125631/v1

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Research Article

Recovery journey of schizophrenic patients in Chinese culture:A Qualitative Study of Experiences

https://doi.org/10.21203/rs.3.rs-2125631/v1

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published 27 Jun, 2023

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Background: Psychiatric recovery is an integration of clinical and psychosocial frameworks. Previous concepts of recovery have been derived from a Western individualistic cultural context. In contrast, Chinese culture is dominated by collectivism under Confucianism. Therefore the recovery journey of Chinese people with schizophrenia may differ from that of the West. This study examines the experiences of Chinese schizophrenics on their recovery journey to understand the impact of Chinese culture on recovery.

Methods: The researcher selected 11 schizophrenic patients for an in-depth interview. And the researcher used an interpretative phenomenological research method to analyze the data.

Results: Three themes were identified in this study: traumatic experiences, rooted in family, and recovery impetus, comprising nine sub-themes. "Responsibility to the family" and "relying on oneself" are the main drivers of recovery for patients with a Chinese cultural background. Some patients believe that taking care of themselves is an important way to ease the burden on their families and treat them well. So there is a link between 'responsibility to family' and 'reliance on oneself.

Conclusions: Chinese patients with schizophrenia experience significant traumatic experiences and profoundly interact with their families. Both patient autonomy and kinship contribute to the recovery journey, suggesting that the influence of both patient autonomy and kinship should be considered in services that promote recovery. Developing a Chinese cultural context for recovery is an essential issue for Chinese psychiatric rehabilitation services.

Schizophrenia

Recovery

Qualitative research

Family

Culture

Schizophrenia is a severe psychiatric disease. It usually brings social dysfunction to individuals. In most early psychiatric models, schizophrenia was believed to be a gradual process of mental decline. Kraepelin named schizophrenia early-onset dementia because he believed that the loss of function was gradual and irreversible[1]. A little later, in some scholarly reflections on Klippelin's views, it was suggested that his focus on symptoms and signs led to a neglect of the whole patient and his life story [2].

With the rise of the recovery movement, individuals are increasingly writing about their treatment experiences and journey to recovery, raising awareness that recovery from schizophrenia is possible[3, 4, 5, 6]. The results reported in these studies indicate that about half of the participants recover or significantly improve over the long term, suggesting that remission or recovery is much more common than previously thought [7, 8]. On the other hand, by studying the stories of those who have recovered, it is possible to tease out what recovery means to them, what factors affected and helped their recovery; and what they think is critical to the recovery process[9].

Spaniol and his colleagues pointed out that the four broad stages of mental illness recovery are being overwhelmed by the disease, fighting with the disease, coexisting with the disease, and surpassing the disease. Coexisting with the disease and surpassing the disease. The three main steps related to the recovery process are (1)an interpretive framework for understanding the experience of severe mental problems, (2)gradually controlling mental illness, and (3)gaining a meaningful, productive, and valuable status in society.For patients, understanding the experience of serious mental problems is their first step toward recovery [11].

Brammer believes that recovery is neither a matter of biomedical/clinical nor psychosocial recovery; it is an integration of clinical and psychosocial frameworks[12].

Sambeek et al. also point out that researchers often ignore the socio-cultural context of the narrative [13] or focus only on the personal or social dimensions of the telling [14].

Some cross-cultural studies suggest that cultural differences can lead to differences in patients' stigmatizing attitudes towards mental illness [15, 16]and can also influence the psychological experience of family members in caring for patients and how they care for them[17, 18].

Chinese culture is dominated by collectivism under Confucianism. In Chinese culture, family and individual bonds are solid and interdependent[19]. In this context, does the recovery process differ from that in the West?

Some researchers have explored the field, and Yen-Ching Chang has highlighted the influence of Chinese culture on recovery-oriented services. He identified the search for cooperation from family members and the elimination of stigmatizing influences as the main challenges faced by professionals in a non-Western context[20].

Eva Yin-han Chung's review of several papers argues that the concepts and philosophies of Western community-based rehabilitation cannot be directly applied to the Chinese context. An appropriate model or framework is needed to adapt to the unique Chinese cultural context and to guide practice in the Chinese community. [21]

The above research suggests that the theory of recovery in China needs to consider Chinese culture. Researching Chinese patients' recovery experiences can help us understand the recovery process of Chinese patients and consider the similarities and differences in the recovery journey of schizophrenic patients in different cultures.

Research objects

Participants were recruited through clinical staff at the Wuhan Mental Health Centre from November 2017 - March 2018. Participation was voluntary and was only possible with informed consent. Inclusion criteria: (1) It complies with the International Statistical Classification of Diseases and Related Health Problems "Diagnostic criteria for schizophrenia in the 10th edition; (2) Patients who have experienced at least two relapses or have residual symptoms but have a current BPRS score of less than 35. Psychiatrists perform the 18-item BPRS score [12]; (3) Willing to participate in qualitative research interviews and informed consent. Exclusion criteria: (1) combined with mental retardation; (2) combined with severe physical or cerebral organic diseases; (3) combined with psychoactive substance abuse or dependence. Eleven patients were finally enrolled.

The patient's general information is shown in Table 1.

Table 1

Demographic information of patients
Number	sex	Age	Disease course(years)	Marital status	Place of residence /co-resident	BPRS cores
A	female	27	10	Married	Home/husband, daughter	23
B	male	35	18	Single	Home/parents	28
C	male	22	5	Single	Home/parents	28
D	male	49	26	Divorced	Home/Living alone	25
E	female	51	32	Divorced	Home/Living alone	27
F	male	33	8	Married	Home/wife	23
H	female	55	7	Married	Home/husband	23
G	female	24	7	Married	Home/husband,son	21
I	female	49	15	Divorced	Home/Living alone	27
J	female	50	10	Divorced	Home/Living alone	21
K	male	28	9	single	Home/parents	25

Instruments

We adopt the interpretative phenomenological analysis(IPA) method in this study. IPA was developed by Jonathan A. As a new qualitative research method in the fields of health psychology and social science, IPA focuses on how people perceive experience, that is, on the study of the living world[23, 24, 25]. The hypothesis in the interpretive phenomenological analysis is that the content of the participant’s psychological world that the analyst pays attention to may be manifested in the form of belief and structure by the participant’s words, or the participant’s story itself represents the identity of the participant[23, 24]. Researchers interpreting phenomenological analysis want to analyze in detail how participants perceive and attach meaning to events that happen to them, so they need a flexible means of data collection. IPA mainly uses semistructured interviews to collect data[25, 26].

This study wanted to explore the disease-related experiences of schizophrenic patients after an illness. Interviews mainly focus on how they get sick, how they think about the disease, and the impact of the disease on themselves. How do they cope with these effects? We also ask patient’s current living conditions. The interview is semistructured and interactive. The researcher will ask open questions and clarify the answers. Encourage the patient to express themselves as completely as possible until they feel there is nothing more to say. (interview schedules are available within the Supplementary Material).

The study's sample selection mainly uses the objective sampling method and follows the principle of saturation. The interviews are conducted face-to-face; each is from 1 to 1.5 hours. The interview location is in the psychotherapy room of the hospital. After obtaining the patient's consent, sign the informed consent form, and record the interview. The research team consisted of three psychiatrists and a graduate student in psychology. The interviewer was a graduate student in psychology. All of the researchers were trained in qualitative research and conducted qualitative research. Some patients underwent supplementary interviews according to the needs of the investigator. We used a code assigned to each participant to ensure anonymity.

The interviewers converted the recordings into verbatim transcripts after each interview, and IPA was conducted following Smith et al.'s (2009) guidelines[26]: (1) Reading and re-reading; (2) Initial noting; (3) Developing emergent themes; (4) Searching for connections across emergent themes; (5) Moving to the next case, (6) Looking for patterns across cases.

Each interview was first analyzed individually by MM and CYH. After several readings of the transcripts for familiarity, the first emergent themes, which included descriptive, verbal, and conceptual comments, were identified through an initial coding process. These emergent themes were then grouped into higher-order categories, creating a list of superordinate themes for each interview. The research team then reviewed these themes until a consensus was reached and looked for links between the superordinate themes throughout the interviews. The research team then moved on to the next case and finally looked for patterns across cases.

Ethics

The Ethics Committee of the Wuhan Mental Health Centre approved the study. All subjects were informed of the purpose of the study. Their right to refuse participation without any adverse effect on their support or relationship with the organization, and measures to ensure confidentiality. Following this explanation, All subjects agreed to participate in the study and provided written consent to participate in the study.

Three themes were identified in this study: traumatic experiences, rooted in family, and recovery impetus, comprising nine sub-themes (Table 2), each supported by quotes from participants' records.

Table 2

Theme and Subtheme
Theme	Subtheme	Participant contribution
Theme	Subtheme	A	B	C	D	E	F	G	H	I	J	K
Traumatic experiences	Symptom- induced distress		x	x	x	x	x	x	x	x	x
	Stigma and self-stigma	x	x		x	x	x			x	x	x
	Loss of hope, feeling of powerlessness	x	x	x	x	x	x		x	x	x	x
Rooted in family	Discrimination, blame from family members -- anger, depression	x			x	x
	Family concerns -- fear, depression		x	x								x
	Family communication, encouragement -- increased interaction and mutual concern					x		x	x	x	x
	Influence on medication	x	x			x					x	x
The push for recovery	For the family						x			x	x
The push for recovery	Relying on oneself						x		x	x	x

Traumatic experiences

Each patient referred to the traumatic experience of having schizophrenia, which included symptom-induced distress, stigma, and feelings of powerlessness.

Symptom-induced distress

These include both bodily and psychological distress. Even after the patient's symptoms are controlled, the pain remains fresh in the patient's mind. The pain experience may be why the patient persists in treatment or is willing to seek help from a doctor.

"It is so unbearable, worse than death, and people who have never had the disease cannot feel the pain. The onset of the disease is too painful, too torturous. It's all about the physical discomfort and the pain. The pain in my body is so bad that I can get sick at any time, my chest and back feel like a nail is stuck there, my hands and feet are numb, and it is particularly uncomfortable. "(G)

"It (referring to the symptoms) is not cyclical. It suddenly comes and goes, but wait a bit. The key is not to be anxious; once it happens, your thoughts will not work if you are anxious. You don't think about anything. I don't want to think about anything. "(F)

"It's just hard, hard. I can't stop thinking about problems. I can't control them. I don't want to think about problems. My mind will still think about them. I want to clear my mind, but there are voices in my head that keep talking. It's hard. I can't help it. I can't think about extreme problems, but my head gets dizzy when I think about unnecessary problems." (C)

"Couldn't sleep the next day. My mental state was terrible, and my condition was worse. "(B)

Stigma and self-stigma

Some patients report being talked about, being shunned, isolated, and devalued. And they feel lonely, devalued, restricted, and angry. Some patients said they felt low self-esteem because of mental illness, felt pessimistic about the future, avoided contact with the outside world, or feared that others would know about their disease.

"I walk out. People point at me and murmur: she is the wife of whoever, she is the daughter of whoever. And she is a mental illness. It's like I'm boxed inside that dungeon." "I found that everyone ignored me when I returned from the hospital. They don't care about me. They teach the children to ignore me. En, I'm so lonely and isolated there. No one wants to care about me." (A)

"The psychological impact of the illness, maybe, is inferiority and a little pessimistic about the future. The inferiority complex means that people with the disease are often looked down upon by others. A person is often looked down upon by others. His life is over. Pessimism means that you feel very pessimistic about your future." (B)

"We, as patients, are also stigmatized in society. I was afraid to tell anyone about my illness. But it affected me all my life. Right? I can't even talk about it. Maybe someday I'll meet someone I love. I can't even talk about it. Friends, I lost a lot of friends that I used to play with, and I reached out to them, and they didn't talk to me. "(J)

Loss of hope, feeling of powerlessness.

Most patients describe a loss of hope and powerlessness, while others feel scared. Some people have this feeling for a period of time after the illness, and some are in this feeling all the time. This feeling is related to being diagnosed with schizophrenia, being on medication for a long time, or having recurrent disease episodes.

"After I found out my diagnosis was schizophrenia, I felt like I just lost hope in life, I didn't want to care about anything, I didn't want to do anything" (F)

"It felt scary, saying something about (the diagnosis of) schizophrenia, it just felt quite scary and could scare people to death. ...... When does the second life start? The first life was given to me by my mother, I feel like there is no second life, and I feel like a wasted person when I keep taking medication and eating." (L)

"When I got out of the hospital, my ability of survival was poor. I was weak. When I heard the doorbell, I was scared.." (J)

"It just wasn't good, I didn't feel so lucky. Quite a lot of my classmates that I hang out with don't have it, and I'm the only one who has it." (C)

"A bit pessimistic about the future, I guess ...... pessimistic means feeling very pessimistic and disappointed about the future." "My parents are old, 50 or 60 years old. If they die, how do I do." "Schizophrenia, well, can't be cured completely, mentally very tortured." (B)

Rooted in family

Most of the interviewees lived with their families. Among the three patients (D, E, and I) who did not live with their families, 2 (E and I) also had close contact with their families. Only patient D stated that he rarely communicated with his family. All patients had a permanent home and no experience of homelessness. Family members frequently interacted with the patients, and interactions with family members significantly impacted the patients' mood and behavior. Family members' attitudes and behavior towards patients' medication also significantly impacted patients' treatment and mood.

Discrimination, blame from family members - anger, depression

The patient experiences impatience, unconcern, and blame from family members, for which the patient feels angry and depressed.

"My husband, if people ask him who she (meaning the patient) is. His attitude then becomes like this, too, just saying to ignore her and not to talk to her. I once tried cross-stitching, which requires a lot of patience. I was halfway through the embroidery when my husband said, "What are you embroidering? You can't even do your housework properly and still embroider this. He denied me. What housework did I fail to do? Did I not cook, did I not take care of my children, did I not take care of my mother-in-law? "(In an outraged tone) (A)

"The children don't come to see me either, and I'm particularly depressed and bitter emotionally" (D)

"My parents pick on my sore spot and talk nonsense. En, all this talk is making me feel bad. "(E)

Family concerns - fear, depression

Patients experience a variety of worries from family members, such as family members worrying about the patient's condition, the side effects of medication, the patient's relationships, and the patient's future. Family members' worries about the patient can add to the patient's fears.

"As long as I have this symptom, I can't do anything. My parents are worried and afraid that my interpersonal relationship outside is shallow. If I want to do something, I need a person to lead me to do it. My parents don't have anyone right now." (C)

"My mother was disappointed in me. She said I would become a farmer like them if I were still so negative. I'm a little worried myself. En, I swallowed the whole bottle of pills. A bottle of clozapine." (K)

Family communication, encouragement - increased interaction and mutual concern

Patients experience that their family members are willing to listen to what is bothering them, feel that family members care about them, or feel that family members are encouraging them and affirming the positive changes they are making. These listening, caring, and support of family members make patients willing to talk and care more about their family members.

"My parents also say that I'm a different person. They all think I'm good. I'm good to them. (J)

"I talk to her (referring to the daughter) a little bit, a little bit (about the condition), sometimes she opens up and tells me to, um, learn to control myself, and she also, she asks me to, but I can't do it, I told her that too, I said I can't do it." (D)

"My daughter lives where she work, and she's very concerned about me and often calls me. After all, I was worried about her being a girl, but I have since discovered that she is capable, so I am relieved now." (I)

Influence on medication

Family members have an important influence on patients about medication. Family members will remind patients to take their medication. Some family members accompany the patient to hospital appointments and prescriptions, and the patient feels supported. However, some family members make taking medication an essential thing for the patient, constantly reminding the patient and equating failure to take the medication with the onset of the patient's illness. Other family members force-feed medicines to the patient, and these coercive methods make the patient unhappy and resentful. Some family members are also concerned about the side effects of the medication and ask the patient to stop taking it.

"I was then always very positive and cooperative in my treatment. At first, it was my 70-year-old father who brought me to the doctor, and then later, I slowly came to the doctor on my own." (J)

"My family always asked me if I had eaten or taken my medication. I had to remember to take my medicine and not to forget to do so. These were just a few words. I felt like I had accomplished a considerable task." (A)

"My mother was afraid I would get sick from my medicine, so she told me not to take it." (B)

"Whenever I get angry and don't take my medicine, my parents think I will be sick." (L)

They (referring to parents) would take a scoop, open my mouth with the scoop, and ask me to take my medicine, and I also felt disgusted. (E)

The push for recovery

Patients want to get better, but taking the initiative to take steps to start getting better, rather than avoiding people and situations that make it difficult for them, requires a driving force. The patient's narrative reveals that being for family and relying on oneself are the motivating factors for increasing patient initiative.

For the family

Patients take responsibility for their families and want to be able to take care of them, such as their elderly parents, younger siblings, and children, to "take on the burden of the family" and to provide financial and emotional care for them. Patients interpreted the improvement of their situation as a way of not "causing trouble" for their families. "easing the burden" for them, and taking responsibility for them.

"My father is dead too,...... My mother is old, and I have two younger sisters, so I have to bear the burden of my family." "If I lose touch with society and drag my family down with me, at the end of the day, it's all; it's all hurting myself, it's all hurting my family." (F).

"My mum and dad are very old and emaciated ....... I want to lighten the burden on my family" "My mum and dad are physically ill. I think this burden I have to pick up. Then I went out to work again, and I forced myself when I was working. Slowly I was able to do the job." "Now I can take part of the responsibility of the family, and I also care for my sister, my brother-in-law, my niece, my dad, and my mum." (J).

"I hope not to give my daughter any trouble. When she needs money, I can help her. The first is not to be hospitalized. I want my life to be about taking medicine, eating, closing my eyes, and not being hospitalized again. When I was in the hospital, those who cared about me, including my parents and my daughter, were affected. I was also sick and had much pain."(I)

Relying on oneself

Four patients referred to 'relying on oneself', which includes relying on oneself to manage life's chores, regulate one's emotions, take care of oneself and encourage oneself. Relying on oneself is also an expression of taking responsibility for one's life and supporting oneself.

"The reality is that you still have to rely on yourself, you have to do a lot of tedious things in real life by yourself, you can't be a little bit lazy, it's like taking care of yourself, if you are a little bit lazy, you will end up not wanting to do it more and more." "If you don't make any progress at all, if you're not willing to go in a good direction and improve yourself, then the doctor can't do anything with you, and the medicine can't do anything with you." (I)

"You have to unlock the locks yourself, but if your heart is locked, you can't open it," "You have to rely on yourself, you have to rely on yourself." (F)

"We ordinary people, we have to rely on ourselves, ...... can't give up on ourselves." (G)

" Now it's about being strong on your own. Keep yourself in an optimistic frame of mind and look down on some things a little bit." (H)

Previous studies have suggested that developing schizophrenia is a traumatic experience for patients [27, 28, 29]. Some studies have linked traumatic experiences to psychotic symptoms and treatment experiences [30], while others have linked traumatic experiences to shame [31, 32].

People with severe mental illness (SMI) often encounter stigmatizing perceptions of mental illness[33]. These perceptions can lead to social exclusion, discrimination, and microaggressions against people with serious mental illnesses [34, 35, 36]. The effects of stigma include self-stigma, where a person internalizes socially stigmatizing messages about mental illness. Self-stigma can lead to depression, low morale, lower self-esteem, poor disease management, social avoidance, and impediments to pursuing and achieving recovery goals[37–40].

Isabella Berardelli suggest that demoralization is a syndrome of existential distress. This symptom may occur in people with chronic mental illness that threatens the integrity of existence or the meaning of people as participants in the world [41]. Frank identifies low morale as being characterized by feelings of helplessness, incompetence, declining self-esteem, despair, being stuck in a rut, loneliness, and meaninglessness, possibly followed by a wish to die[42]. Onken argues that low morale can be a significant obstacle in the recovery process[8]. Ritsher argues that three sub-themes of self-change, pessimism about the future, and feelings of control construct the patient's sense of powerlessness[43]. A study by Liu Liang et al. on Chinese patients found that patients lacked clear judgments about their personal experiences in many areas, including physical experiences, mental states, and related factors. Participants often felt nervous, sensitive, and vulnerable in their daily lives and were unsure whether their feelings or judgments were 'normal'. They lose confidence and become powerless in their lives[44].

It is evident from the accounts of the patients in this study that the illness causes great suffering to patients and that after developing schizophrenia, patients experience, or have experienced, a lack of hope, a lack of strength, and a lack of ability to face life again in the future. However, this suffering comes not only from a sense of stigma and powerlessness but also from the symptoms themselves. The painful experience of symptoms is why patients seek treatment, and some patients use hospitalization as the ultimate solution to cope with the pain of their symptoms. Some patients are opposed to treatment and feel that hospitalization is forced upon them and that prolonged medication increases their sense of powerlessness.

Symptom-induced distress is integral to the patient's traumatic experience, prompting health professionals to pay attention to it. Dealing with self-stigma and powerlessness is an important aspect of recovery.

Many researchers have reported on the effects of family on people with schizophrenia. Patients with schizophrenia who come from families with high emotional expression (expressing high levels of criticism, hostility, or excessive involvement) have higher relapse rates than those with schizophrenia from families without similar problems [ 45, 46, 47].

Family warmth and positive remarks have been found to have a protective effect and reduce the likelihood of relapse [ 48].

Johannes Jungbauer et al., in a study of German schizophrenics, found that at the time of the interview, 41% of the patients were still living with their parents or had moved back to their homes[ 49].

Ninety percent of people diagnosed with schizophrenia in China live with their families, compared to 60 percent in the UK and 40 percent in the US [ 50 ]. Such a high proportion of patients live with their families and interact more with them, and the influence of family members on patients is more evident.

This study suggests that the patient's interaction with family members significantly affects the patient's mood and behavior. With family discrimination and blaming, the patient develops negative emotions and impulsive behavior; he may also develop depressive and withdrawal behavior. Family members' concerns may also increase patients' worries about the future and the outside world. At the same time, family members' willingness to communicate with patients may also improve patients' communication with family members.

A study by Johannes Jungbauer et al. found that re-enforcement of the parent-child relationship may lead to decreased social contact outside of the patient's family [49]. Whereas all of the patients in this study, except patient D, maintained close relationships with their families. And some patients also had a lot of social contact outside the home. Therefore the differences between patients with a lot of social interaction and those with little social contact should be further studied. One possible reason is that family members feel uneasy about the outside world, thus discouraging patients from social contact with the outside world. For example, Patient C. A qualitative study by Zhang Yanqing et al. in Taiwan also found that when families were not actively involved or supportive of their relatives' recovery journeys or could not work with their relatives, clients' recovery would be negatively affected. This study also suggested that families' overprotection or fear of making changes for their relatives with mental illness would make people with mental illness unable to participate in independent learning and decision-making [51].

Because of the prominent influence of family members on patients, Chinese patients need to improve family-patient interaction and change the overprotective nature of family members. The influence of family was found in this study to manifest in patients' motivation to recover.

Joanna refers to the primary motivation for recovery as the 'drive to move forward', which is the foundation or starting point for recovery. This forward momentum includes hope, optimism, determination, belief in a higher power, and an awakening of motivation. In his study, Some participants spoke of recovery as a spiritual journey and a connection to a higher power. Finding meaning and purpose is a key part of recovery, and some people seek and find this meaning in their religious beliefs [ 52].

Janne believes that religion and spirituality hold a great deal of power in the search for meaning in the lives of people with mental illness [ 53].

In contrast, the patients in this study didn't mention religious beliefs. What, then, constitutes meaning in their lives? According to some patients, "for family" has become the meaning of life. Several patients in this study described that taking responsibility for one's family is often the turning point in one's decision to work towards recovery. Their description suggests that for Chinese patients, family not only has an important influence on them but is also a source of motivation for recovery.

This phenomenon is related to the psychological characteristics of the Chinese people. Yang Guoshu suggests that familism is a major indigenous set of Chinese psychology and behavior and a complex indigenous cultural phenomenon in Chinese society. Familism refers to the Chinese idea and practice of putting the family first in all matters. Familism aims to maintain the strength and harmony of the family, for which the children must pass on the family line and support and obey their parents. The basis of its ideology is filial piety. The responsibility of being a child to provide for one's parents is an important part of familism, and it forms an important part of Chinese life[ 54]. Eva Yin-han Chung also argues that for Chinese people, identification and connection to family give meaning to life; responsibility and commitment are important factors that motivate people and empower them to live meaningful lives[55].

Abdullah argued that in Asian populations, patients' inability to care for their parents when they are old and sick could create a sense of stigma for the patient[15]. In a study by Yin-Ling Irene Wong et al. on Chinese patients and families, participants with schizophrenia expressed a sense of shame and low self-esteem, talking about being a burden to their families[50].

This study shows that the patient's renewed responsibility for parental support, assisting a younger sibling, and raising and helping children is an essential expression of their life's meaning and catalyzes the patient's recovery. The patient feels proud if they can achieve these goals. Therefore in the eyes of Chinese patients being able to achieve the task of caring for their families gives them a sense of pride, while not being able to do so increases their sense of stigma.

On the other hand, patients also express that they are "on their own", dealing with life's chores, regulating their emotions, taking responsibility for their lives, and supporting themselves.

Several researchers have described recovery as a transformative process of self-discovery and self-renewal, which involves adjusting one's attitudes, feelings, perceptions, beliefs, roles, and life goals[ 11, 55, 56]. Yulia et al.'s study considered the individual's sustained efforts towards positive transformation and improvement as the basis of the recovery process. The opposite of this is abandonment, i.e., the acceptance of the patient's negative identity as a patient with a chronic illness and the lack of intrinsic motivation to want to get better[57]. Larry Davidson believes that rebuilding an "enhanced sense of self" protects people from being struck down by illness and provides a solid foundation for their recovery[46]. Onken argues that rejuvenation is often rooted in agency and self-activity[10]. A study by Deegan et al. identified the right to patient choice and empowerment as important elements of recovery[58]. Markowitz et al. suggest that for patients to recover from the trauma of schizophrenia, the healing process involves not only a new lifestyle and control of symptoms but also increasing proficiency in overcoming stigma and discriminatory experiences in the social sphere[59].

It is an important direction of rehabilitation to promote the development of self-discovery and self-ability of patients.

It is worth noting that some patients in this study took good care of themselves as an important way to relieve their families' burden and treat them well. "If society is disengaged and drags the family, the family down too, at the end of the day, it is all, it is all about hurting yourself, it is about hurting your family. So these things then all have to rely on themselves." "I hope not to give my daughter any trouble. When she needs money, I can help her. The first is not to be hospitalized. I want my life to be about taking medicine, eating, closing my eyes, and not being hospitalized again. When I was in the hospital, those who cared about me, including my parents and my daughter, were affected. I was also sick and had much pain." Patients believe that if they are not well, their families will suffer; if they are well, they can ease the burden for their families. Thus, "depending on oneself" is associated with " for one's family".

It is clear from this study that both the self and the family are emphasized in the patient's experience of recovery. The individual is an individual in the family. The honor and shame of the individual are closely linked to the honor and shame of the family. The individual's efforts can improve the family's situation. So the individual's efforts are as much for himself as for his family.

Limitations

The study may be limited for several reasons. The participants had certain geographical limitations. The study was carried out only in one big city in China. Our sampling method may have resulted in selection and response bias. Participants were recruited through clinical staff. In addition to recommending individuals who fit the study’s inclusion criteria, clinical staff tended to refer people with good relationship.

Both family and individual strengths play a key role in the recovery process of Chinese schizophrenics. The interaction between the patient and the family needs to be considered in rehabilitation work, while the patient's self-functioning needs to be emphasized. Careful consideration of the impact of Chinese culture on patients and the development of a Chinese cultural context for recovery is an important issue for Chinese psychiatric rehabilitation services.

Ethics declarations

The study was carried out in accordance with ethical principles for medical research involving humans (WMA, Declaration of Helsinki). Ethical approval was obtained from Wuhan Mental Health Center Ethics Committee (KY2016(52)). All subjects provided written informed consent to participate.

Consent for publication

Not applicable.

Funding

The programme was funded by the Wuhan Municipal Health and Wellness Commission (WX17B14).

Availability of data and materials

The datasets generated and analysed during the current study are not publicly available due [ this is a Qualitative Study ] but are available from the corresponding author on reasonable request.

Author information

Wuhan mental health center, Wuhan hospital for psychotherapy, Rehabilitation Department

Min Ma

Shanghai Pudong New Area Mental Health Center, Tongji University School of Medicine

Zhidao Shi

China University of Geosciences Wuhan

Yanhong Chen

Shanghai Children’s Medical Center, School of Medicine, Shanghai Jiao Tong University, Department of Developmental and Behavioral Pediatrics

Xiquan Ma

Corresponding author

Corresponding to Xiquan Ma

Co-first author

Co-first author to Zhidao Shi

Contributions

MM and SZD wrote the main manuscript text, CH was the interviewer, and MXQ prepared the timetable. All authors participated in the interpretive phenomenological analysis of the data. Zhidao Shi is co-first author. All authors read and approved the final manuscript.

Competing interests

The authors declare no competing interests.

Acknowledements

We would like to thank Dr. Dehui Zhou for her help in writing and Chunyan Wu for her work in the translation of the thesis.

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No competing interests reported.

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published 27 Jun, 2023

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Editorial decision: Major revision
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Recovery journey of schizophrenic patients in Chinese culture:A Qualitative Study of Experiences

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