Caregiving experiences of family caregivers of patients with schizophrenia in a community: a qualitative study in Beijing

Abstract

Objectives

This study aims to understand the caregiving experiences of family caregivers of people with schizophrenia in a community.

Design

A qualitative study based on phenomenological analysis was conducted through in-depth interviews.

Setting

This study was carried out from May to June 2023 in two community health service centres in urban Beijing, China.

Participants

We selected 16 family caregivers for interviews using purposive sampling method.

Results

Four themes and 10 subthemes were identified: (1) psychosocial distress of family caregivers (feeling unprepared and helpless at the beginning, confronting negative emotions in long-term care and straying away from social life); (2) adverse impacts on the whole family (poor cooperation within the family, insufficient family involvement in professional care); (3) coping with family caregiving (accepting the reality of the patients’ illness, struggling with family life balance and having realistic expectations); (4) concerns about future care (daily living support, physical health management).

Conclusion

Family caregivers experienced psychosocial distress and family stress in the process of caregiving. They had to cope with caregiving stress and were concerned about the long-term care of people with schizophrenia. These findings provide implications for intervention programmes to strengthen social support, family involvement, and active coping for caregivers and develop long-term care mechanisms for people with schizophrenia.

Correspondence to Professor Xiaoqin Lu; [email protected] ; Dr Guanghui Jin; [email protected]

STRENGTHS AND LIMITATIONS OF THIS STUDY

• The study provides insights into the caregiving experiences of family caregivers within the stress-appraisal-coping framework.

• We only recruited participants in urban areas, while family caregivers in rural areas may have different experiences.

• The findings have limited generalisability due to cultural differences across different countries.

• There was no public involvement at any stage of the research.

Introduction

Schizophrenia is a severe mental illness (SMI) affecting approximately 24 million people worldwide as of 2022.¹ There are approximately 8 million individuals in China diagnosed with schizophrenia.² It is a highly disabling mental illness that can significantly affect multiple aspects of an individual’s life, such as personal, family, social, educational and occupational functioning.¹ The average healthcare coverage of people with SMI across all countries was 31.3% in 2017, and it was even lower in low-income and middle-income countries.³ WHO’s Comprehensive Mental Health Action Plan 2013–2030 recommended shifting mental health services from mental health institutions to the community.⁴ The plan also highlighted comprehensive, integrated mental health and social care services in community-based settings.⁴

The management of people with SMI is an essential component of community mental healthcare in China. In 2016, the Chinese government implemented a financial policy encouraging families to be involved in caring for people with SMI in the community.⁵ Family caregivers are family members involved in assisting people with schizophrenia with daily living and medical tasks, which mainly comprise parents, spouses, siblings and offspring of people with schizophrenia. Their caregiving burden and health-related quality of life can be exacerbated by long-term care, persistent schizophrenia symptoms, discrimination against people with schizophrenia and financial burden.^{6 7} It should be noted that caregivers are under considerable emotional, physical and financial pressure due to multidimensional, long-term and generational impact on family members.⁸ Low health literacy level of mental illness among family members can make it difficult to provide adequate care for people with schizophrenia and worsen the burden on family.⁹ Social stigma and discrimination associated with schizophrenia prevent caregivers from seeking professional care and support,¹⁰ which affects not only the patients’ community-based rehabilitation but also the caregiver’s experiences.

The stress-appraisal-coping framework provides a way of conceptualising caregiving experiences.¹¹ It results from an interaction between the patients’ illness and factors in the caregiver’s external and internal world. According to the framework, the patients’ illness, associated behaviours, disabilities and perceived disruptions in the caregivers’ life are appraised by the caregivers as stressors. The caregivers’ personality, quality of family relationships and level of social support are considered as mediating factors. Family caregivers who provide care for family members with schizophrenia have negative emotional experiences, including feelings of sadness, exhaustion, frustration, hopelessness and lack of support.^10–12 Losing control over one’s life, feeling anxious around relatives and self-perceived impaired health can intensify the severity of depression among caregivers.¹³ Caregiving experiences contain positive aspects as well, including acquisition of knowledge and skills, contentment with one’s current life and personal growth.^14–16 Previous studies focused on the individual pressure and emotional burden of caregiving, but more comprehensive perspectives of caregiving experience are also needed. In terms of the impact of family caregiving, it is crucial to consider the unique personality, customs and traditions of each family unit.¹⁷ In Chinese culture, family is considered as the most important relationship for individuals. Social norms dictate that family needs to take responsibility for the behaviour and well-being of individuals.¹⁸ In China, a three-tier mental health system is established, where community mental healthcare plays a crucial role in managing individuals with SMI at the primary care level.¹⁸ Families are an extension of the mental healthcare system, and family caregivers are important resources for informal care. Previous studies from the communities in China mainly described the caregiving burden, needs and utilisation of social support as well as barriers to access support.^19–21 However, the unique caregiving experiences of family caregivers are scarcely explored.

This study aims to understand the experiences of family caregivers who take care of people with schizophrenia in the context of community-based rehabilitation.

Methods

Study design

A qualitative study based on interpretive phenomenological analysis (IPA) was conducted to explore family caregivers’ experiences of taking care of people with schizophrenia.²² IPA is a qualitative research methodology that focuses on people’s lived experiences and how they interpret those experiences.²² Semistructured in-depth interviews are widely used by healthcare researchers to capture respondents’ personal experiences and attitudes with open-ended questions.²³ The interview guide was formed on the basis of stress-appraisal-coping framework¹⁰ and literature review.^12–17 We conducted preliminary interviews with three participants. Information gathered from these interviews was used to modify and improve the original interview guide, resulting in the development of a formal interview guide. Following the Consolidated criteria for Reporting Qualitative research,²⁴ this study conducted participant recruitment, data collection and date analysis within the context of primary care.

Participants

Purposive sampling was used to recruit participants.²⁵ Units in a homogeneous sample share similar traits or specific characteristics. We aimed to capture their shared caregiving experiences. We selected two districts (Xicheng District and Fengtai District) from six urban districts in Beijing. Xicheng District is located in inner city and Fengtai District is in the southern part of urban Beijing. A community health service centre (CHSC) was selected from each district, which can provide sufficient number of people with schizophrenia and their family caregivers for interviews. Mental health doctors in the CHSC are responsible for the management of people with schizophrenia. Participants were recruited with the assistance of community mental health doctors. The inclusion criteria were: (1) age over 18 years; (2) living with a person diagnosed with schizophrenia as a spouse, parent, sibling or offspring; (3) shouldering major responsibilities of caregiving for at least 1 year; and (4) having communication capability to share personal experiences and willingness to participate.

Data collection

From May to June 2023, personal in-depth interviews were conducted at the CHSC. Two interviewers (ZP and TL) were well trained in qualitative interviews and had no prior contact with the participants. Interview date and location were confirmed beforehand. Participants were informed of the objectives and process of the study and were assured of the confidentiality of personal information. All the participants provided written informed consent. No one else was present besides the researchers and the participants during interviews. The interview topics included: (1) perception and response to the illness, (2) thoughts and attitudes related to caregiving, (3) impact of caregiving on the entire family and (4) needs and preferences of support (see online supplemental file 1). With consent from the participants, we recorded and took field notes during the interview. The notes were returned to participants for comments and corrections. There were no repeat interviews carried out. After each interview, we provided a gift (thermos) for each participant to compensate for his or her time.

Data analysis

Within 24 hours after interview, recorded data and interview notes were transcribed. NVivo V.12 software was used for data management and coding in the study. We analysed data based on the IPA guideline,²⁶ with the following steps: (1) carefully and repeatedly review the interview transcripts to gain an overall understanding of the interview data; (2) identify initial annotations and comments about meaningful statements; (3) develop emergent themes, theme clusters and categories; (4) search for connections across emergent themes; (5) relate themes to the research subject to provide an exhaustive interpretation; (6) state essential structures that make up the caregiving experiences. We kept a logbook recording our preliminary assumptions, individual cognitive perspectives, existing research findings and details from our interview interaction with interviewees. Two researchers (ZP and TL) independently reviewed the transcripts, coded, summarised and refined the interview notes to form themes and subthemes. Any discrepancies were resolved through discussion and consensus among three researchers (ZP, GJ and XL). Recruitment stopped when data saturation had been reached. Data saturation was achieved after interviewing 14 caregivers (C1–C14), denoting that new information could not be obtained even after two additional interviews (C15–C16).

Patient and public involvement

No patients or caregivers were involved in the development of the research questions, the study design or the analysis.

Results

Characteristics of participants

16 family caregivers participated in this study. No one refused to participate or dropped out. Their age ranges from 36 to 74 years, with an average of 58.34±4.51 years. Most of the participants have been taking care of the patients for over 10 years. Detailed characteristics of caregivers and patients are presented in table 1.

Table 1

Characteristics of caregivers and patients for the study (n=16)

Characteristics	Caregivers (n)	Patients (n)
Age (years)
<40	2	2
40–60	6	8
>60	8	6
Gender
Female	10	5
Male	6	11
Education level
Primary and below	2	7
Junior high	6	2
Senior high and above	8	7
Marital status
Married	14	10
Unmarried	2	6
Occupation
Employed	2	2
Retired	8	7
Unemployed	6	7
Relationship
Parent	4	4
Spouse	4	4
Sibling	4	4
Offspring	4	4
Duration of illness (years)
<5	N/A	1
5–10	N/A	2
>10	N/A	13
Caregiving length (years)
<5	3	N/A
5–10	3	N/A
>10	10	N/A

The participants comprised of four parents, including two fathers and two mothers; four spouses, including three wives and one husband; four siblings, including one brother, two sisters and one sister; four children, including two sons and two daughters.

N/A, not applicable.

Themes

The audio-recorded interviews lasted between 30 and 70 min, with an average of 45±5.65 min. The analysis revealed 4 main themes with 10 subthemes, as shown in table 2. Identifiers (C1–C16) were used to indicate interview sources of quotations.

Table 2

The themes and subthemes

Themes	Subthemes
Psychosocial distress of family caregivers	Feeling unprepared and helpless at the beginning
	Confronting negative emotions in long-term care Straying away from social life
Adverse impacts on the whole family	Poor cooperation within the family
	Insufficient family involvement in professional care
Coping with family caregiving	Accepting the reality of the patients’ illness
	Struggling with family life balance
	Having realistic expectations
Concerns about future care	Daily living support
	Physical health management

Theme 1: psychosocial distress of family caregivers

Subtheme 1.1: feeling unprepared and helpless at the beginning

After the diagnosis of schizophrenia, most caregivers were unprepared and helpless. They became the family caregivers without preparedness and did not know where to get professional assistance as well as how to take care of the people with schizophrenia.

At first, I thought he was upset, maybe sad. But it never occurred to me that he might have schizophrenia until the doctor confirmed the diagnosis. It surprised the entire family as to how he got the condition. (C3)

I had to take on the role of family caregiver without being ready, as I didn’t know what works well in the family and what doesn’t, and no one else was available to assist me. (C8)

Subtheme 1.2: confronting negative emotions in long-term care

After the initial shock and unpreparedness, caregivers had to cope with problems related to family caregiving. They often feel guilty and ashamed because of long-term care and social discrimination of the illness.

I have to prepare myself mentally before every visit home, as my brother had suicidal tendencies. If such an unfortunate thing occurred, I would be overwhelmed by remorse and a sense of failing my parents. (C14)

I have to take care of my husband and son, who are both people with schizophrenia, as well as a granddaughter with anemia to look after. There is no way out. I don’ want people to know more about my family. (C16)

Subtheme 1.3: straying away from social life

Family caregivers have to commit themselves to caring for people with schizophrenia. They are unable to work outside and lose important relationships, gradually straying away from their own social life.

I have to be with him almost every day, and I can’t go out and get a job. I have lost my life. I can’t do what I like anymore either, and I have less contact with my former colleagues. (C11)

I am an outgoing person and people enjoy being friends with me. However, since my children became ill, few people have remained close to me, and I feel particularly lonely and isolated. At my age, people often ask me where do my childwork. When they found out that my child had schizophrenia, they ceased to contact me. (C1)

Theme 2: adverse impacts on the whole family

Subtheme 2.1: poor cooperation within the family

Family members often have discrepancy in the distribution of responsibilities, attitudes towards people with schizophrenia and treatment choices, resulting in poor family interactions. This impedes families from providing adequate care for people with schizophrenia.

My husband cannot help me take care of our son. He always blames me, saying I’m not doing a good enough job caring for him. It’s tough to know what to do in those situations, you know? (C16)

My father and brother do not value long-term treatment for my mother’s schizophrenia, while I insist that my mother needs continuous medication and hospitalization. They do not understand me. (C2)

Subtheme 2.2: insufficient family involvement in professional care

Family caregivers are gradually isolated by society. The important role and needs of family caregiving are often overlooked, which makes it difficult for families to be involved in the treatment and rehabilitation of people with schizophrenia.

Families play a crucial role in caring for people with schizophrenia, but they also need the attention and support from professionals. There is very limited information available to my family about treatment and rehabilitation options for schizophrenia. This constrains my ability to further participate in the patient’s professional decision making. (C9)

It’s frustrating when she start to feel better and then stop taking medicines. The doctor emphasized the importance of adhering to the medication. To be honest, I’m considering a different drug with fewer side effects for the patient. It’s hard to get on the same page when we don’t have much time to discuss things. And sometimes, even when we do get a chance to talk, it is hard to really understand each other. (C12)

Theme 3: coping with family caregiving

Subtheme 3.1: accepting the reality of the patients’ illness

Over the years of caregiving, the family caregivers have learnt to accept the reality. They think that acceptance was associated with facing and undertaking caregiving responsibility properly instead of giving up.

Schizophrenia is a serious mental illness requiring long-term care. Accepting it will reduce a lot of anger and depression in my life. (C3)

I used to grieve for a long time because my child was sick, so it was difficult to accept this illness. I just assumed that it did not exist. In fact, it was a disaster in my life. But now, I just go to the temple and pray to accept it. (C8)

When I think of her inability to marry, have children, or work like others in the future, I feel sad and angry. It’s hard for me to admit she is ill. But as her mother, it is my responsibility to give her the best possible care and not to give up hope. I had to accept the reality. (C10)

Subtheme 3.2: struggling with family life balance

Some caregivers said that the needs of people with schizophrenia are not always prioritised, and the other needs of their families are equally important. They had to balance between people with schizophrenia and other family members and deal with conflicting demands.

If my son’s mental health deteriorates significantly, I’d consult my family and work with them to get him admitted to a psychiatric hospital to receive appropriate care and treatment. (C3)

My mother requires substantial support and care, yet my child also necessitates companionship. I take my child out to play once a week. This gives me a short break to relax and rest. (C2)

Subtheme 3.3: having realistic expectations

Participants said that lowering their overall expectations in the full recovery of people with schizophrenia and changing their future expectations contribute to reducing the stress of caring for them.

A person can only get better to a certain point, and coming to terms with the fact they won’t be cured can provide some comfort. (C2)

I’ve had a tough time. I receive minimum amount of government support for my basic living needs, and I don’t have high expectations for the future. (C5)

Theme 4: concerns about future care

Subtheme 4.1: daily living support

Participants want public institutions to provide care for people with schizophrenia in the future. They have difficulty in supporting people with schizophrenia as they are ageing. After they pass away, other family members may not be able to take on the role of a caregiver.

After I pass away, there would be no one to take care of my loved one at home. I wish that, in the future, there will be a social care facility available to him. It would be beneficial to have a long-term place that focuses on assisting him with his daily life. (C6)

It would be useful to create a peaceful and enjoyable environment for older people with schizophrenia to live in. Such an environment could help people develop personally and improve their social skills, leading to more chances to engage with the community and feel involved. (C4)

Subtheme 4.2: physical health management

Participants expressed concerns about the physical health problems and financial burden of people with schizophrenia in the future. They hoped that the chronic conditions and side effects of antipsychotic drugs of people with schizophrenia can be effectively managed.

He’s been taking antipsychotic medication for many years, which has damaged his liver and kidneys. Additionally, the patient is smoking and his physical check-up was not good. I referred him to Tertiary Psychiatric Hospital where the doctor said they could treat his mental illness, but not his kidney condition. (C7)

Prescribing drugs that protect liver is difficult at tertiary care hospitals. Some of these drugs aren’t available at community health centers and can only be purchased on the internet. However, his pension is often not enough for drugs. This requires additional expenses for families. (C9)

Discussion

This study presents the experiences of family caregivers for people with schizophrenia, both in terms of personal caregiving psychosocial experiences and the impact on the whole family. Caregivers adopted adaptive strategies to cope with negative experiences, but they were still concerned about future care of people with schizophrenia.

We found that family caregivers initially felt unprepared and helpless in taking care of people with schizophrenia. This may be due to their lack of knowledge about persistent symptoms and unpredictable prognosis of schizophrenia. They did not know how to deal with the situation that may arise and what approach is best.²⁷ Family caregivers were confronted with negative emotions of providing long-term care in our study. The illness could significantly affect their interpersonal relationship, occupation and social integration, ultimately leading to emotional distress.¹⁵ Family caregivers suffer from negative emotions such as sadness, anger, stigma and shame. These negative emotional experiences will affect the mental health of caregivers and the quality of care for people with schizophrenia. In China, the general public’s awareness and understanding of schizophrenia are relatively poor.²⁷ Providing primary caregivers with more information about the illness can help them control the symptoms of people with schizophrenia. Community mental health professionals can play important roles in enabling caregivers to exchange experiences and support with their peers.²⁸ Family interventions can provide information about schizophrenia, problem-solving skills, communication skills and social skills training to reduce stigma and improve psychosocial well-being of family caregivers.²⁹

The study described the impact of long-term care for people with schizophrenia on the whole family. We found high levels of emotional expression and maladaptive behaviours among family caregivers and other family members. Poor coordination of family caregiving was associated with higher levels of depression, anxiety, reduced social activities and greater burden of caregivers.³⁰ Family members often have disagreements on caregiving decision and management, which can affect their involvement in the treatment and rehabilitation of people with schizophrenia. Family involvement in mental healthcare is often overlooked,³¹ and family caregivers are frequently excluded from decision-making in the treatment of people with schizophrenia.³² Primary care doctors can provide a valuable platform for families to express their emotions and receive support from qualified psychiatrists, as well as from the community.³³ To improve the relationship between families and mental healthcare institutions, it is essential for clinical teams and specialised mental health professionals to collaborate with family members.³⁴ Providing family-centred support allows family members to share their caregiving experiences and preferences,³⁵ empowering them to become more involved in the collaborative care and treatment plan of people with schizophrenia.

Family caregivers reported struggles in accepting the illness, balancing family life and setting realistic expectations. Effective coping strategies for family caregiving are associated with positive experiences of caregiving, such as increased sensitivity towards people with disabilities, greater clarity regarding their priorities in life and a stronger sense of inner strength.³⁶ We found that caregivers developed personal coping strategies to relieve the stress of providing long-term care for people with schizophrenia. They seldom sought social support. This may be related to dysfunctional family relationships and inadequate health services.³⁷ Caregivers adopted adaptive and maladaptive strategies as a result.³⁸ A meta-analysis study indicates that caregivers have many coping strategies, such as problem-focused coping, emotional coping, behavioural coping, coping through social support and religious coping, according to their own needs and challenges.³⁹ Meeting the needs of family caregivers can help to address the impact of illness and care, thereby reducing negative emotions associated with caregiver roles.⁴⁰ By modifying attitudes and behaviours regarding seeking social support, caregivers may be able to cope with family caregiving more effectively.

Most of the older caregivers expressed concerns about daily living and healthcare of people with schizophrenia in the future. Some studies showed that parents and siblings of people with schizophrenia were worried that other family members would not be able to continue caring for people with schizophrenia and did not know how to plan for future care.^{41 42} People with schizophrenia living alone have more extreme symptoms and functional impairments and require a supportive rehabilitation environment.⁴³ We found that primary caregivers preferred to receive support from social institutions. Community-based social interventions are recommended to prioritise family needs such as housing, employment and community participation, which are often promoted by targeted policy and government funding.⁴⁴ Most caregivers expressed that they had difficulties in maintaining the physical health of people with schizophrenia and believed that their physical conditions would worsen in the future. The shifting of mental healthcare to primary healthcare in China is still ongoing,⁴⁵ and insufficient attention has been paid to the assessment and management of physical illness of people with mental illness. General practitioners and mental health professionals need to establish collaborative care models to improve their physical and mental health by adjusting lifestyle, monitoring health changes, promoting access to health services and increasing financial support for people with schizophrenia.^45–47

We have not found other qualitative studies exploring the caregiving experiences of family caregivers of people with schizophrenia based on the stress-appraisal-coping framework. This framework contributed to understanding of negative caregiving experiences in our study, while other qualitative studies not based on this framework reported positive aspects of caregiving experiences.^14–16 Several quantitative studies have used this framework to comprehend the objective and subjective burdens on caregivers, with the aim of identifying determinants, mediators and outcomes related to caregiving.^{48 49} This can provide evidence for the development of interventions.

There are some limitations in the study. First, we only recruited participants from urban areas, whereas family caregivers in rural areas may have different experiences, limiting the representativeness of the findings. To gain a comprehensive insight into the experiences of different family caregivers, a larger sample size and quantitative analysis should be considered in future study. Second, the findings have limited generalisability due to cultural differences across different countries. However, the implications of this study might be relevant to similar caregiving contexts. Third, there is no public involvement at any stage of the research. Future research should involve members of the public to obtain their advice on the setting of research questions, the wording of interviews and the initial analyses. Individuals with caregiving experiences can provide valuable input in research design and implementation.

Conclusion

This study provides insights into the experiences of family caregivers taking care of people with schizophrenia. Family caregivers experienced psychosocial distress and negative impact on their families. They struggled to cope with the caregiving stress and expressed concerns about the future care of people with schizophrenia. These findings provide implications for future research and intervention programmes to strengthen social support, family involvement and active coping to improve caregiving experiences. Psychosocial interventions should be provided for family caregivers, and more attention should be paid to family support and promoting family involvement in mental healthcare. It is important to provide professional social support to assist family caregivers in coping positively with family caregiving. Policies and long-term care mechanisms should be developed for people with schizophrenia, especially for people who are unable to have family caregiving.

To all family caregivers who participated in this research, we sincerely thank them for their contribution and sharing of experiences. We also thank physicians working in community mental healthcare institutes for their help with patient recruitment.

Data availability statement

Data are available upon reasonable request.

Ethics statements

Patient consent for publication

Consent obtained from parent(s)/guardian(s).

Ethics approval

This study involves human participants and was approved by the Medical Ethics Committee of Capital Medical University (ethics number: Z2023SY078). All participants gave informed consent and joined voluntarily. They had the option to withdraw at any point and review their transcripts. Anonymity was assured for all published materials.

Footnote

Contributors ZP is the first author. XL obtained funding. ZP, GJ and XL designed the study. ZP and TL collected the data. ZP and TL were involved in data cleaning and data analysis. ZP drafted the manuscript. ZP, GJ and XL discussed and analysed the disparities of the themes and interpreted the data. All authors have read and approved the final manuscript. GJ and XL are the study guarantors.

Funding This research was supported by the 2022 Humanities and Social Science Research Foundation of Ministry of Education of China (grant number: 22YJA840008).

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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