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International Journal of Mental Health Nursing (2014) 23, 355–363
doi: 10.1111/inm.12055
Feature Article
Self-management in Chinese people with schizophrenia and their caregivers: A qualitative study on facilitators and barriers Haiou Zou,1 Zheng Li,1 David Arthur2 and Hongxing Wang3 1
School of Nursing, Peking Union Medical College, 3Beijing An Ding Hospital, Capital Medical University, Beijing, China; and 2Charles Darwin University, Melbourne, Australia
ABSTRACT: The purpose of this study was to explore facilitators and barriers of self-management from the viewpoint of Chinese people with schizophrenia and their caregivers. A qualitative study using the individual interview method was used. Twenty-one people with schizophrenia and 14 caregivers were interviewed. Three facilitators were identified: family and peer support, positive relationships with health professionals, and positive attitudes towards self-management. Four barriers were identified: lack of knowledge and skills, financial constraint, social stigma, and uncoordinated mental health services. The findings from this study should help nurses to recognize the factors that influence self-management and provide direction for nurses and other health professionals involved in initiating and implementing family-based self-management programmes for people with schizophrenia. The findings also call for the development of antistigma programmes, which are needed to help reduce prejudice and discrimination towards individuals with schizophrenia in China. The study also provides information for health policy makers in China to help them make potential changes in mental health services, which can better meet the needs of Chinese people with schizophrenia. KEY WORDS: barrier, caregiver, facilitator, qualitative study, schizophrenia, self-management.
INTRODUCTION Despite access to the benefits of second-generation psychopharmacotherapy, people with schizophrenia still have persistent psychotic symptoms (Kane 1996; Lindenmayer 2000), impaired social functioning (Angell & Test 2002; Norman et al. 1999), unsatisfactory quality of life (Kopelowicz et al. 2003), and low employment (McGurk & Mueser 2004; Racenstein et al. 2002). Thus, it is not surprising that schizophrenia is listed as the eighth-leading cause of disability-adjusted life years worldwide in the 15–44-year age group. Correspondence: Zheng Li, Peking Union Medical College, School of Nursing, Dong Dan San Tiao, No.9, Dong Cheng District, Beijing 100730, China. Email: [email protected] Haiou Zou, PhD. Zheng Li, PhD. David Arthur, PhD. Hongxing Wang, MD. Accepted November 2013.
© 2013 Australian College of Mental Health Nurses Inc.
Recently, the Schizophrenia Patient Outcomes Research Team provided a comprehensive summary of the current evidence-based psychosocial treatment interventions for people with schizophrenia. According to their report, skills training and illness self-management are recommended as important psychosocial treatments (Dixon et al. 2010), and self-management itself is a vital step towards enabling people to play an active role in managing their own illness. Further, Marks et al. (2005) stated that if people with chronic conditions, such as schizophrenia, avoid self-management and are not actively involved in their own care, positive clinical outcomes are difficult or impossible to achieve. Although some researchers doubt the selfmanagement ability of people with schizophrenia (Stewart et al. 2010), many studies have demonstrated that a significant proportion of people with schizophrenia can successfully self-manage their condition (Onken et al. 2007). They not only have the ability to make decisions
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related to medication use (Kampman et al. 2002; Marland & Cash 2005), but also have the capacity to manage psychotic symptoms (Shepherd et al. 2010). However, a gap exists in the literature in the exploration of these selfmanagement issues in terms of the facilitators and barriers that enhance self-management among people with schizophrenia. Since 1993, there has not been a definitive national survey of the prevalence of schizophrenia in China. One study, which focused on determining the lifetime prevalence of schizophrenia and its sociodemographic correlates in Beijing, suggested that the lifetime prevalence of schizophrenia was 0.49% (Xiang et al. 2008). Another, which explored the impact of mental health on labour market outcomes in China, concluded that schizophrenia and other mental illnesses account for 20% of the total burden of diseases in China (Lu et al. 2009). Despite the lack of clear prevalence data, indications are that the number of people with schizophrenia is impacting negatively on the health-care system, and innovative management strategies are desirable. Despite the emphasis on increasing acceptance of self-management for people with schizophrenia in the international-refereed literature, little evidence about Chinese people and their caregivers exists. In particular, their perceptions and concerns about self-management, the strategies they use, and the factors that facilitate or impede self-management have yet to be examined in depth and reported. Therefore, the specific aim of this study was to explore the facilitators and barriers that influence self-management in a sample of Chinese people with schizophrenia and their caregivers. Self-management is defined as the active participation of the patient and caregiver in the management of schizophrenia, based on adherence with psychotic medication, monitoring, and managing the psychotic symptoms utilizing health resources and maintaining social relations. A better understanding of these facilitators and barriers is expected to help in the design of tailored interventions aimed at improving the lives of people with schizophrenia.
METHODS Setting and participants A qualitative phenomenological design with individual interviews was used in this study. The study was conducted in an outpatient department of a large public mental health hospital, located in the downtown area of Beijing, which provides psychiatric care to local, regional, and national patients. A purposive sampling strategy was used to recruit participants, with the intent of achieving
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data saturation during the data analysis process. Thirtyfive people were interviewed, of whom 21 were diagnosed with schizophrenia, and 14 were caregivers. The former were selected in accordance with the following inclusion criteria: (i) had a diagnosis of schizophrenia according to the 10th revision of the International Classification of Diseases for at least 2 years; (ii) aged 18 years or older; (iii) Chinese residents; (iv) Mandarin speaking; and (v) being treated as an outpatient. Participants were excluded if they could not demonstrate a capacity to provide informed consent; for example, when people were experiencing an acute exacerbation of their illness or exhibited problems with cognitive function that may diminish their decisional capacity. Inclusion criteria for caregivers were: (i) living with the patient and being a major care taker; (ii) being in a care-giving role for at least 1 year; (iii) Chinese residents; and (iv) Mandarin speaking. Exclusion criteria were: (i) current personal history of serious and persistent mental illness; or (ii) having a major physical health problem.
Data collection Following ethics approval, which was obtained from the institutional review board of the participating hospital and university, people with schizophrenia attending the outpatient department were informed of the study and invited to approach the researcher. The researcher explained the study, the ethical issues, and the role of the participant. After providing written, informed consent, the participants were individually interviewed in a private consultation room in the outpatient department of the hospital. All interviews were conducted by the first author, who was not directly involved in the patients’ care, during a 3-month period from March to May 2011. Each interview lasted between 30 and 60 min. Open-ended questions were used, such as: ‘Tell me about what facilitates or supports your ability to manage your illness’ and ‘Tell me about what impedes your ability to manage your illness’. All interviews were audiotaped with the permission of the participants. Recordings were immediately labelled and stored for subsequent verbatim transcription. Data analysis ceased at saturation, when no new themes were identified.
Data analysis The interviews were transcribed verbatim in Mandarin by the interviewer (first author). Accuracy was checked by another author (ZL); then the first author and a postgraduate student read the material a number of times to become immersed in the data. Data were analysed by the © 2013 Australian College of Mental Health Nurses Inc.
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first author and the postgraduate student independently using Collazzi’s qualitative methodology. The process was consistent with Collazzi’s methodology for extracting significant statements, formulating meanings, and organizing clusters of themes. Consensus meetings were held to discuss the analysis and resolve disagreements. If consensus was not reached, then an experienced qualitative researcher (ZL) was consulted, and the interpretations were further discussed and validated at a meeting that involved all of the authors. Finally, the themes were translated into English by the first author. Another author, who is a native English speaker and a researcher with qualitative expertise, then edited the participant quotes in English, while working with the first author to carefully maintain the meaning of the quotes in the original Mandarin.
RESULTS There was a total of 35 participants, of whom 21 were diagnosed with schizophrenia, and 14 were caregivers. Ten of the patients with schizophrenia were female, and only five had part-time work. The duration of illness ranged from 3 years to 43 years. Among the caregivers, five were spouses, and nine were parents. Years of caring for patients with schizophrenia ranged from 2 years to 27 years (Tables 1 and 2).
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Analysis and clustering of emerging themes resulted in three clear facilitating factors and four perceived barriers. With no exceptions, people with schizophrenia and caregivers shared remarkably similar perceptions of the facilitators and barriers related to self-management of schizophrenia.
Facilitating factors Family and peer support
The participants’ statements indicated that family support was a critical aspect of self-management, which they relied upon. Those with supportive family members reported good medication adherence. One participant with a 22-year history of schizophrenia reported: I always rely on my mother. She kept taking care of me for more than 20 years. Now she is almost 80 years old, but still she reminds me to take medication, takes me to every appointment, gets medication prescriptions, and keeps the medication for me. (Participant (P)2)
Besides increased medication adherence, the involvement of family members helped to monitor psychotic symptoms and to identify the early warning signs, so that early intervention could be implemented to prevent relapse. From the caregivers’ perspectives, the role of a family member can change, depending on the patient’s condition. For example, when a person was in a stable stage,
TABLE 1: Characteristics of patients participating in the interview People with schizophrenia 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21
Sex
Age (years)
Education
Currently employed
Duration of illness (years)
Female Male Female Female Male Male Male Male Female Female Male Female Male Male Male Male Female Female Male Female Female
38 42 27 52 53 46 37 41 36 42 25 52 51 59 28 33 36 34 29 43 39
University Middle school University Middle school Middle school Middle school Middle school Middle school Middle school University University Middle school Middle school Primary school Middle school Middle school University Middle school Middle school University Middle school
No No No No No No Part time No No No Part time No No No Part time Part time Part time No No No No
5 22 5 31 7 4 4 23 13 10 10 32 30 43 4 3 13 6 9 15 9
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H. ZOU ET AL. TABLE 2: Caregiver 1 2 3 4 5 6 7 8 9 10 11 12 13 14
Characteristics of caregivers participating in the interview Age
Sex
Relationship to patient
Education
Years of caring for patient
55 49 59 58 56 56 57 41 54 48 51 54 39 55
Female Male Female Male Female Male Female Female Female Male Female Female Male Male
Spouse Father Spouse Father Spouse Father Mother Spouse Mother Father Mather Mather Spouse Father
Middle school University Middle school University Middle school University University Middle school Middle school University University Middle school Middle school Middle school
24 2 18 25 27 4 9 11 5 4 4 11 16 9
caregivers encouraged them to become independent and to take some responsibility for their self-management, with the caregiver offering passive support. However, the caregivers were ready to be more active if necessary: I tried to encourage him (son) to take medication by himself, but he missed so much. Then I realized that it’s not possible to leave the full responsibility to him; I have to take a major role. (Caregiver (C)11)
Besides support from family, the participants expressed a desire for peers to assist them in managing their illness. They stated that they might benefit from peer support by ‘sharing information and experience’, ‘gaining knowledge’, and ‘receiving emotional support’ and ‘not feel lonely’: It’s hard to live with schizophrenia, even with my family who supports me very much. If somebody with the same illness encourages and supports me, that’s what has been most beneficial to me. (P1)
Positive relationship with health professionals
A positive relationship with health professionals was cited as an instrumental factor in managing schizophrenia. The participants’ statements revealed that they placed their trust in health professionals and would adhere to what they told them to do. Many people with schizophrenia said: ‘I don’t understand why I have to take medication’ or ‘It is tough taking so many pills’, but still they took the medication because of the advice of their doctors and nurses: My son has faith in his doctor. Whenever I want to increase the dose because his condition is not good, he will ask: ‘Did the doctor ask you to do that?’. I have to ask
his doctor to call him, and then he will agree to increase the dose. (C14)
The participants also expressed that a close relationship with health professionals increased confidence about managing their illness and maintaining hope: I have an appointment with my doctor every month. She always says: ‘You have the ability to manage your illness and your own life, you can have a normal life just like other people do . . . never give up’. I feel so encouraged. (P10)
Positive attitude towards self-management
Feeling confident, optimistic, and hopeful was important to the outcomes of the illness and key aspects of illness management. Most participants expressed great confidence in their self-management ability. Some regarded caring for themselves as an obligation, while others believed that they played the major role in selfmanagement, because they know themselves best, and they can be their ‘own best doctor’. When selfmanagement strategies were working well and appropriately, they often felt satisfied, which enhanced their confidence: I started learning things (self-management skills) to take care of myself, and the more I learned, the more it was helpful to me. When I compare myself to other people with schizophrenia, who are worse off, I understand that I can succeed, because I can control it, and I’m living well with it. (P20)
Some people expressed optimism during the long journey of fighting the illness. They tried to find positives, and avoid negative attitudes or negative people: © 2013 Australian College of Mental Health Nurses Inc.
SELF-MANAGEMENT FACILITATORS AND BARRIERS I have experienced five relapses during the past 9 years . . . but it’s ok for me; it didn’t ruin my life. . . . It’s now in remission. I can find a job, although it might not be decent, and I can talk to my friend. (P21)
Hope was an effective weapon for helping participants persist in illness self-management. Some participants maintained hope, because they saw the progress of the treatment, and they firmly believed that a more effective treatment for schizophrenia or a cure would be discovered. As one caregiver, whose husband had a 24-year history of illness, indicated: From what I have seen, the treatment has improved compared to 20 years ago. Now there are many therapies and new drugs you can choose . . . those drugs, they have less side-effects and are more effective. . . . I’m sure they (scientists) will find more effective treatment . . . one day people will find a cure for schizophrenia. (C1)
Perceived barriers Lack of knowledge and skills
The lack of knowledge and skills has made it difficult for people with schizophrenia and their caregivers to know how to manage the illness appropriately. One participant stated that ‘the biggest enemy of self-managing is lack of knowledge’. The participants specifically noted that the health-care information they received from nurses and/or other health professionals was not adequate and specific: I think that doctors and nurses only gave me general advice. I expected more detailed information from them, something concerning my own condition that would help me do the self-management in a proper way. (P21)
Caregivers also indicated that they needed relevant knowledge from health professionals. They expressed that they did not understand the illness because of a lack of relevant information. One caregiver said that their family had difficulty accepting the mental illness: We knew there was something wrong with him (son) many years ago, but we couldn’t accept that. There was no one with (a) mental illness from either my family or my husband’s family. It’s impossible he had that kind of disease. We just gave him some traditional Chinese medicine. We took him to a psychiatric hospital last year because we can’t control him at home. The doctors said it was too late. (C12)
Caregivers also expressed that they often misunderstood medication treatment because of a lack of relevant information. Some caregivers confessed that whenever patients’ symptoms disappeared after taking medicine, they would stop the medicine because they believed © 2013 Australian College of Mental Health Nurses Inc.
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that the patients were cured. Other caregivers expressed concern about the impact that the medication would have on people with schizophrenia. Some believed that there would be physical effects, such as the ‘medicine will damage patient’s liver, kidney, or memory’, while another feared that the patient ‘would become addicted to the medication’. As a result, some caregivers modified the treatment regimen, or even advised against medication. Financial constraint
Most of the participants in the study expressed concerns about their financial status because of a lack of savings, unemployment, low income, and lack of medical insurance. They worried that their financial problems might impede their ability to obtain adequate medication: I don’t have a job . . . I don’t have medical insurance. The only financial resource in my family is from my wife, who has a job with a low income. . . . Now I take the cheapest medication. If one day we don’t have enough money, I will have to decrease the dose or stop taking them. (P13)
Some people related how difficult it was to manage their psychiatric symptoms because of their inability to afford effective medication: I tried many medicines, but they are not effective. I still can hear the voices. My doctor said you can try the new drugs (atypical antipsychotic drugs); that might control your symptoms, but those medicines are really expensive, I can’t afford that. If I have enough money, I might be cured. (P19)
In addition, accessing health-care services was also a concern for some participants, especially those who were uninsured: It’s too expensive for him (husband) to seek hospitalization. The whole income of my family per month is only $US50, but the cost for one hospitalization is nearly $US500. How can I afford that? (C3)
Unable to meet the high cost, many families of uninsured patients were reluctant to seek inpatient care until the symptoms became unmanageable. Social stigma
The participants indicated that disclosing their illness to other people engendered, in most people, negative reactions and accompanying comments, such as ‘crazy’ or ‘stupid’. They stated that this negative social stigma contributed to their inability to effectively self-manage their illness. The participants indicated that it was difficult to take antipsychotic medication in public:
360 It’s very difficult for me to take medication at the office. People always ask me what you are eating. I tried many strategies to not let them know, such as change the bottle of the medicine, tell people I took traditional Chinese medicine to improve my immune system, even take medication (in the) bathroom. Finally, I was so tired of doing that and I just stopped taking it. (P9)
The stigma of mental illness and the cultural taboo of discussing mental illness in the Chinese community were also major impediments to seeking care after diagnosis: People make fun of me because I went to the psychiatric hospital . . . I’m so ashamed . . . I will never ever go to this sort of (psychiatric) hospital again. (P15) We are from the rural area of China. In our community, most people believe the ancestors of people with schizophrenia had bad morals. We have to protect our family’s face, so I took him (son) to a local Shaman for treatment after he was diagnosed with schizophrenia. (C9)
The stigma of schizophrenia also became a major obstacle in maintaining social relations. Most frequently, it was stated that the stigma imposed barriers for gaining employment and related professional roles. For some people, returning to one’s job after a period of psychiatric treatment was often accompanied by critical remarks, mistrust, and the denial of skills previously proven: I would really like to continue to work as a project manager, but they tell me that isn’t possible, because with the illness, I wouldn’t be capable of doing it. (P3)
Uncoordinated mental health services
The disruption of care between inpatient and outpatient settings was mentioned as a barrier. Many participants expressed their concerns about a lack of continuity of care, and emphasized the important role of health professionals in the community: No one cares about my illness and how I managed my illness after discharge. The community-based psychiatric services are useless. They just didn’t work. I have to go back to hospital every month only for refilling medication. Health professionals in the community could do more in terms of helping people manage their illness. (P18)
One caregiver, who has a daughter with a 25-year history of schizophrenia, stated: We (in China) lack an effective community network of mental health services. Community-based psychiatric services are very limited in terms of their numbers and function. For most serious mental illness, inpatient care is the most important part of treatment. (C4)
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However, most health professionals in inpatient services often struggle to spend time with people with schizophrenia: Nurses didn’t teach me anything when I was hospitalized. They just don’t have time. They are busy doing routine tasks and focusing on crisis care. They only gave me a one-page education sheet before I was discharged. (P4) There are not enough nurses. When I was hospitalized, there were only six-to-seven nurses caring for 60 patients in that ward. Do you think those nurses have time for education and counselling patients? (P11)
DISCUSSION Three key facilitators and four barriers emerged in the present study. Interestingly, with no exception, people with schizophrenia and their caregivers shared similar perceptions of the facilitators and barriers to selfmanagement. This is a notable finding, because it demonstrates a strong degree of family cohesion related to self-management.
Perceived facilitators Support from the family was identified as an enabler for performing self-management activities. This was not surprising, because Chinese people often place great value on the interdependence of family members. According to Chien and Chan (2004), the proportion of Chinese people with schizophrenia who live with their families is much higher than in Western countries. The findings of the present study are consistent with those in the English literature. For instance, Gallant (2003) demonstrated a modest, positive relationship between family support and illness self-management. Some studies have shown that individuals with schizophrenia living with relatives who are supportive are more likely to adhere to medications than those lacking family support (Fenton et al. 1997; Ramirez et al. 2006). Another study demonstrated that family support is valuable in increasing ongoing psychiatric symptom monitoring and identifying early signs for relapse among people with schizophrenia (Dixon et al. 2001). The present study confirms the importance of continued family supervision and involvement in patient selfmanagement. The finding that peer support is a facilitator for self-management is important, as most people with schizophrenia have small social networks with few opportunities to share their experiences with other people. Peers can therefore play an important role in offering emotional, informational support and hope. It was evident in the participants’ descriptions that a positive relationship with health professionals was a © 2013 Australian College of Mental Health Nurses Inc.
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facilitator to self-management. Previous studies concur with these findings that good communication and connection between health professionals and patients increase treatment adherence, and thereby improve results (Carr 2001). The current study revealed that participants trust health professionals. This could be explained by the fact that health professionals are a revered group in Chinese culture, whose prestige is conferred by their professional status and ability to save lives. Such positive regard likely results in the strong tendency for Chinese people to comply with whatever health professionals recommend. Therefore, support from health professionals should play an important role in self-management. In addition to offering emotional support, health professionals can help equip people with schizophrenia and caregivers with self-management skills, such as medication management, symptom management, utilizing health information and resources, and maintaining social relations. Another facilitator identified in this study was the positive attitude towards self-management. Most participants expressed confidence in their self-management ability, and were optimistic and persistently hopeful. These results are in contrast with Stewart et al.’s (2010), which found that people with schizophrenia had no desire to be involved in self-management (Stewart et al. 2010). Although people with schizophrenia in China experience stigma because of their illness, they also receive strong support from their families and from health professionals. This support becomes central in self-management, and helps maintain very positive attitudes towards illness management. Another possible explanation might be that the confidence exhibited by these participants might have reflected their preference for saving face or preserving social integrity by saying what is desirable. This phenomenon has a strong psychological impact on behaviour in shame-based countries, such as China.
Perceived barriers One of the most common themes that this study identified as a barrier to self-management by both people with schizophrenia and caregivers was a lack of knowledge and skills. All participants described a need for more selfmanagement education, which suggests that there is still a large gap in knowledge in this community. Clearly, patients need to receive adequate and specific information. In addition, people with schizophrenia need individualized information about their illness in order for them to have a personal understanding and acceptance of their condition. It is vital for them to comprehend that they can actually manage their illness and daily life. Caregivers also need relevant information to help them effec© 2013 Australian College of Mental Health Nurses Inc.
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tively support or reinforce their relative’s initiatives in terms of self-management, as caregiver instructions and supervision impact patient adherence to the therapeutic regime. Financial constraints were identified as a barrier to self-management. Similarly, Chan et al. (2007) demonstrated that more than half of the participants in their Hong Kong and Taipei study lived below the poverty line. Thirty percent of Taipei people with schizophrenia had no income at all (Chan et al. 2007). With a limited budget, people with schizophrenia struggle to afford adequate and effective medication, medical care, and hospitalization. Without proper illness management, the risk of relapse increases greatly. According to a Chinese study, the relapse rate for people with schizophrenia who had poor financial support was nearly five times that of people who had enough financial support (Liang et al. 2001). This finding echoes the need for the government to examine the social welfare system to find better ways to financially support people with mental illness. The participants faced intense stigma, which noticeably impinged on self-management. In Chinese culture, it is taboo to discuss mental illness in the community. People with mental illness and their families often feel ashamed about talking about the illness outside of their family, and even within the family. Further, the public lack of awareness of mental illness intensifies the stigma associated with schizophrenia, and undermines attempts to manage the situation and maintain important activities, such as seeking medical care, seeking peer support, finding a job, and finding a partner. This phenomenon of stigmatization is not unique to China. Research published in the English literature reveals that stigma associated with schizophrenia leads to delayed help-seeking behaviour, limits life chances, and creates social isolation (Angermeyer et al. 1999). Studies have shown that over 85% of people with schizophrenia are unemployed (Marwaha & Johnson 2004), despite the fact that most want to work (Mueser et al. 2001) and are capable of working in competitive jobs (Bond et al. 2001). Avoiding stigma and enhancing social integration are also some of the most important and complex aspects in the rehabilitation of these individuals (Kilian et al. 2001). Therefore, developing antistigma programmes intended to reduce prejudice and discrimination towards individuals with schizophrenia in China is a pressing need. Efforts can be made by developing stigma-coping skills for both people with schizophrenia and their families to enhance their self-esteem and give them a sense of empowerment; educating the public with the relevant information about mental illness and schizophrenia; increasing awareness
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about the illness and decreasing prejudice; and finally, cooperating with the media to effectively counteract negative media coverage and supply correct and stigmafree information to the public. Uncoordinated mental health services were identified as barriers to self-management in the present study. The participants expressed concerns about a lack of continuity of care, and emphasized the importance of community rehabilitation. They expressed their need for follow up and continuous education about self-management. This finding calls for improved continuity of care and rehabilitation. Health policy makers in China should consider developing an effective community network of mental health services to help build community-based psychiatric rehabilitation programmes for people with schizophrenia, so that the programmes can assist patients and their families beyond the walls of the hospital in the patients’ recovery. This is important, as psychosis is often an enduring or relapsing illness, and individuals’ willingness to engage in illness management in the medium-to-long term can be dependent on how services are provided (Corcoran et al. 2007).
Strengths and limitation Individuals with schizophrenia contributed directly to the study, thus we eliminated the need to rely on secondhand information from health professionals. The present study provides unique insight into the perceived facilitators and barriers facing Chinese people with schizophrenia and their caregivers regarding self-management. Second, because of the privacy and depth of the individual interviews, the participants felt comfortable and appeared willing and able to express their opinions on the topics introduced. Furthermore, the participants spanned a wide range of age and duration of illness, and all had significant experience with self-management. Despite these strengths, there was one major limitation. It is likely that the study is biased towards positivity, because optimists and people with initiative might have been more willing to volunteer. Those who declined participation might have had more negative experiences with self-management, which could have led to a discussion of different facilitators, and in particular, additional barriers not revealed here. Therefore, it is possible that the authors were not able to capture all possible perspectives on what makes self-management more or less difficult for Chinese people with schizophrenia.
Recommendations for future research Two directions for further research are suggested. First, future studies should involve larger samples and should
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be directed towards the development of culturallysensitive instruments that objectively measure selfmanagement among Chinese people with schizophrenia. There are some instruments measuring self-management among people with schizophrenia; however, it should be noted that cultural norms and values might influence self-management perception and practice. Therefore, self-management instruments reported in Western literature might not apply to the Chinese population. The next step should then be to develop family-based, culturallyappropriate and comprehensive interventions that intend to promote self-management among Chinese people with schizophrenia and their caregivers, based on the findings of the current study.
Implication for practice The findings from the present study could help nurses recognize what factors influence self-management among people with schizophrenia, and might support nurses and other health professionals in initiating and implementing family-based, self-management programmes for Chinese people with schizophrenia and their families. The findings also call for the development of antistigma programmes intended to reduce prejudice and discrimination towards individuals with schizophrenia in China, by enhancing stigma-coping skills for patients and their families, educating the public, and using media to increase public awareness and decrease negative images. Finally, the present study provides information to health policy makers in China to make potential changes in mental health services in order to better meet the needs of Chinese people with schizophrenia.
CONCLUSION In the present study, a variety of perceived facilitators and barriers to self-management among Chinese people with schizophrenia and their caregivers was identified. Based on the results, it is apparent that the current system needs to provide more support and self-management intervention programmes for people with schizophrenia and their families. The public should also be educated in order to decrease stigma of schizophrenia, and health policy makers are called upon to make changes in the delivery of mental health services.
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SELF-MANAGEMENT FACILITATORS AND BARRIERS Angermeyer, M. C., Matschinger, H. & Riedel-Heller, S. G. (1999). Whom to ask for help in case of a mental disorder? Preferences of the lay public. Social Psychiatry and Psychiatric Epidemiology, 34 (4), 202–210. Bond, G. R., Becker, D. R., Drake, R. E. et al. (2001). Implementing supported employment as an evidence-based practice. Psychiatric Services, 52 (3), 313–322. Carr, A. (2001). Barriers to the effectiveness of any intervention in OA. Best Practice and Research Clinical Rheumatology, 15 (4), 645–656. Chan, S. W., Hsiung, P. C., Thompson, D. R., Chen, S. C. & Hwu, H. G. (2007). Health-related quality of life of Chinese people with schizophrenia in Hong Kong and Taipei: A crosssectional analysis. Research In Nursing and Health, 30 (3), 261–269. Chien, W. T. & Chan, S. W. (2004). One-year follow-up of a multiple-family-group intervention for Chinese families of patients with schizophrenia. Psychiatric Services, 55 (11), 1276–1284. Corcoran, C., Gerson, R., Sills-Shahar, R. et al. (2007). Trajectory to a first episode of psychosis: A qualitative research study with families. Early Intervention in Psychiatry, 1 (4), 308–315. Dixon, L., McFarlane, W. R., Lefley, H. et al. (2001). Evidencebased practices for services to families of people with psychiatric disabilities. Psychiatric Services, 52 (7), 903–910. Dixon, L. B., Dickerson, F., Bellack, A. S. et al. (2010). The 2009 schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophrenia Bulletin, 36 (1), 48–70. Fenton, W. S., Blyler, C. R. & Heinssen, R. K. (1997). Determinants of medication compliance in schizophrenia: Empirical and clinical findings. Schizophrenia Bulletin, 23 (4), 637–651. Gallant, M. P. (2003). The influence of social support on chronic illness self-management: A review and directions for research. Health Education and Behavior, 30 (2), 170–195. Kampman, O., Laippala, P., Vaananen, J. et al. (2002). Indicators of medication compliance in first-episode psychosis. Psychiatry Research, 110 (1), 39–48. Kane, J. M. (1996). Treatment-resistant schizophrenic patients. Journal of Clinical Psychiatry, 57 (9), 35–40. Kilian, R., Lindenbach, I., Lobig, U., Uhle, M. & Angermeyer, M. C. (2001). Self-perceived social integration and the use of day centers of persons with severe and persistent schizophrenia living in the community: A qualitative analysis. Social Psychiatry and Psychiatric Epidemiology, 36 (11), 545–552. Kopelowicz, A., Zarate, R., Gonzalez, S. V., Mintz, J. & Liberman, R. P. (2003). Disease management in Latinos with schizophrenia: A family-assisted, skills training approach. Schizophrenia Bulletin, 29 (2), 211–227. Liang, S., Yu, G., Guan, B., Chen, S. & Yang, H. (2001). Factors related to relapse among Chinese people with schizophrenia. Chinese General Practice, 4 (3), 295–296.
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363 Lindenmayer, J. P. (2000). Treatment refractory schizophrenia. Psychiatric Quarterly, 71 (4), 373–384. Lu, C., Frank, R. G., Liu, Y. & Shen, J. (2009). The impact of mental health on labor market outcomes in China. The Journal of Mental Health Policy and Economics, 12 (3), 157– 166. Marks, R., Allegrante, J. P. & Lorig, K. (2005). A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (part I). Health Promotion Practice, 6 (1), 37–43. Marland, G. R. & Cash, K. (2005). Medicine taking decisions: Schizophrenia in comparison to asthma and epilepsy. Journal of Psychiatric and Mental Health Nursing, 12 (2), 163–172. Marwaha, S. & Johnson, S. (2004). Schizophrenia and employment – a review. Social Psychiatry and Psychiatric Epidemiology, 39 (5), 337–349. McGurk, S. R. & Mueser, K. T. (2004). Cognitive functioning, symptoms, and work in supported employment: A review and heuristic model. Schizophrenia Research, 70 (3), 147– 173. Mueser, K. T., Salyers, M. P. & Mueser, P. R. (2001). A prospective analysis of work in schizophrenia. Schizophrenia Bulletin, 27 (2), 281–296. Norman, R. M., Malla, A. K., Cortese, L. et al. (1999). Symptoms and cognition as predictors of community functioning: A prospective analysis. American Journal of Psychiatry, 156 (3), 400–405. Onken, S. J., Craig, C. M., Ridgway, P., Ralph, R. O. & Cook, J. A. (2007). An analysis of the definitions and elements of recovery: A review of the literature. Psychiatric Rehabilitation Journal, 31 (1), 9–22. Racenstein, J. M., Harrow, M., Reed, R., Martin, E., Herbener, E. & Penn, D. L. (2002). The relationship between positive symptoms and instrumental work functioning in schizophrenia: A 10 year follow-up study. Schizophrenia Research, 56 (1), 95–103. Ramirez, G. J., Chang, C. L., Young, J. S., Lopez, S. R. & Jenkins, J. H. (2006). Family support predicts psychiatric medication usage among Mexican American individuals with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 41 (8), 624–631. Shepherd, S., Depp, C. A., Harris, G., Halpain, M., Palinkas, L. A. & Jeste, D. V. (2010). Perspectives on schizophrenia over the lifespan: A qualitative study. Schizophrenia Bulletin, 5 (1), 1–9. Stewart, D. C., Anthony, G. B. & Chesson, R. (2010). ‘It’s not my job. I’m the patient not the doctor’: Patient perspectives on medicines management in the treatment of schizophrenia. Patient Education and Counseling, 78 (2), 212–217. Xiang, Y. T., Ma, X., Cai, Z. J. et al. (2008). Prevalence and socio-demographic correlates of schizophrenia in Beijing, China. Schizophrenia Research, 102 (3), 270–277.
International Journal of Mental Health Nursing (2014) 23, 355–363
doi: 10.1111/inm.12055
Feature Article
Self-management in Chinese people with schizophrenia and their caregivers: A qualitative study on facilitators and barriers Haiou Zou,1 Zheng Li,1 David Arthur2 and Hongxing Wang3 1
School of Nursing, Peking Union Medical College, 3Beijing An Ding Hospital, Capital Medical University, Beijing, China; and 2Charles Darwin University, Melbourne, Australia
ABSTRACT: The purpose of this study was to explore facilitators and barriers of self-management from the viewpoint of Chinese people with schizophrenia and their caregivers. A qualitative study using the individual interview method was used. Twenty-one people with schizophrenia and 14 caregivers were interviewed. Three facilitators were identified: family and peer support, positive relationships with health professionals, and positive attitudes towards self-management. Four barriers were identified: lack of knowledge and skills, financial constraint, social stigma, and uncoordinated mental health services. The findings from this study should help nurses to recognize the factors that influence self-management and provide direction for nurses and other health professionals involved in initiating and implementing family-based self-management programmes for people with schizophrenia. The findings also call for the development of antistigma programmes, which are needed to help reduce prejudice and discrimination towards individuals with schizophrenia in China. The study also provides information for health policy makers in China to help them make potential changes in mental health services, which can better meet the needs of Chinese people with schizophrenia. KEY WORDS: barrier, caregiver, facilitator, qualitative study, schizophrenia, self-management.
INTRODUCTION Despite access to the benefits of second-generation psychopharmacotherapy, people with schizophrenia still have persistent psychotic symptoms (Kane 1996; Lindenmayer 2000), impaired social functioning (Angell & Test 2002; Norman et al. 1999), unsatisfactory quality of life (Kopelowicz et al. 2003), and low employment (McGurk & Mueser 2004; Racenstein et al. 2002). Thus, it is not surprising that schizophrenia is listed as the eighth-leading cause of disability-adjusted life years worldwide in the 15–44-year age group. Correspondence: Zheng Li, Peking Union Medical College, School of Nursing, Dong Dan San Tiao, No.9, Dong Cheng District, Beijing 100730, China. Email: [email protected] Haiou Zou, PhD. Zheng Li, PhD. David Arthur, PhD. Hongxing Wang, MD. Accepted November 2013.
© 2013 Australian College of Mental Health Nurses Inc.
Recently, the Schizophrenia Patient Outcomes Research Team provided a comprehensive summary of the current evidence-based psychosocial treatment interventions for people with schizophrenia. According to their report, skills training and illness self-management are recommended as important psychosocial treatments (Dixon et al. 2010), and self-management itself is a vital step towards enabling people to play an active role in managing their own illness. Further, Marks et al. (2005) stated that if people with chronic conditions, such as schizophrenia, avoid self-management and are not actively involved in their own care, positive clinical outcomes are difficult or impossible to achieve. Although some researchers doubt the selfmanagement ability of people with schizophrenia (Stewart et al. 2010), many studies have demonstrated that a significant proportion of people with schizophrenia can successfully self-manage their condition (Onken et al. 2007). They not only have the ability to make decisions
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related to medication use (Kampman et al. 2002; Marland & Cash 2005), but also have the capacity to manage psychotic symptoms (Shepherd et al. 2010). However, a gap exists in the literature in the exploration of these selfmanagement issues in terms of the facilitators and barriers that enhance self-management among people with schizophrenia. Since 1993, there has not been a definitive national survey of the prevalence of schizophrenia in China. One study, which focused on determining the lifetime prevalence of schizophrenia and its sociodemographic correlates in Beijing, suggested that the lifetime prevalence of schizophrenia was 0.49% (Xiang et al. 2008). Another, which explored the impact of mental health on labour market outcomes in China, concluded that schizophrenia and other mental illnesses account for 20% of the total burden of diseases in China (Lu et al. 2009). Despite the lack of clear prevalence data, indications are that the number of people with schizophrenia is impacting negatively on the health-care system, and innovative management strategies are desirable. Despite the emphasis on increasing acceptance of self-management for people with schizophrenia in the international-refereed literature, little evidence about Chinese people and their caregivers exists. In particular, their perceptions and concerns about self-management, the strategies they use, and the factors that facilitate or impede self-management have yet to be examined in depth and reported. Therefore, the specific aim of this study was to explore the facilitators and barriers that influence self-management in a sample of Chinese people with schizophrenia and their caregivers. Self-management is defined as the active participation of the patient and caregiver in the management of schizophrenia, based on adherence with psychotic medication, monitoring, and managing the psychotic symptoms utilizing health resources and maintaining social relations. A better understanding of these facilitators and barriers is expected to help in the design of tailored interventions aimed at improving the lives of people with schizophrenia.
METHODS Setting and participants A qualitative phenomenological design with individual interviews was used in this study. The study was conducted in an outpatient department of a large public mental health hospital, located in the downtown area of Beijing, which provides psychiatric care to local, regional, and national patients. A purposive sampling strategy was used to recruit participants, with the intent of achieving
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data saturation during the data analysis process. Thirtyfive people were interviewed, of whom 21 were diagnosed with schizophrenia, and 14 were caregivers. The former were selected in accordance with the following inclusion criteria: (i) had a diagnosis of schizophrenia according to the 10th revision of the International Classification of Diseases for at least 2 years; (ii) aged 18 years or older; (iii) Chinese residents; (iv) Mandarin speaking; and (v) being treated as an outpatient. Participants were excluded if they could not demonstrate a capacity to provide informed consent; for example, when people were experiencing an acute exacerbation of their illness or exhibited problems with cognitive function that may diminish their decisional capacity. Inclusion criteria for caregivers were: (i) living with the patient and being a major care taker; (ii) being in a care-giving role for at least 1 year; (iii) Chinese residents; and (iv) Mandarin speaking. Exclusion criteria were: (i) current personal history of serious and persistent mental illness; or (ii) having a major physical health problem.
Data collection Following ethics approval, which was obtained from the institutional review board of the participating hospital and university, people with schizophrenia attending the outpatient department were informed of the study and invited to approach the researcher. The researcher explained the study, the ethical issues, and the role of the participant. After providing written, informed consent, the participants were individually interviewed in a private consultation room in the outpatient department of the hospital. All interviews were conducted by the first author, who was not directly involved in the patients’ care, during a 3-month period from March to May 2011. Each interview lasted between 30 and 60 min. Open-ended questions were used, such as: ‘Tell me about what facilitates or supports your ability to manage your illness’ and ‘Tell me about what impedes your ability to manage your illness’. All interviews were audiotaped with the permission of the participants. Recordings were immediately labelled and stored for subsequent verbatim transcription. Data analysis ceased at saturation, when no new themes were identified.
Data analysis The interviews were transcribed verbatim in Mandarin by the interviewer (first author). Accuracy was checked by another author (ZL); then the first author and a postgraduate student read the material a number of times to become immersed in the data. Data were analysed by the © 2013 Australian College of Mental Health Nurses Inc.
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first author and the postgraduate student independently using Collazzi’s qualitative methodology. The process was consistent with Collazzi’s methodology for extracting significant statements, formulating meanings, and organizing clusters of themes. Consensus meetings were held to discuss the analysis and resolve disagreements. If consensus was not reached, then an experienced qualitative researcher (ZL) was consulted, and the interpretations were further discussed and validated at a meeting that involved all of the authors. Finally, the themes were translated into English by the first author. Another author, who is a native English speaker and a researcher with qualitative expertise, then edited the participant quotes in English, while working with the first author to carefully maintain the meaning of the quotes in the original Mandarin.
RESULTS There was a total of 35 participants, of whom 21 were diagnosed with schizophrenia, and 14 were caregivers. Ten of the patients with schizophrenia were female, and only five had part-time work. The duration of illness ranged from 3 years to 43 years. Among the caregivers, five were spouses, and nine were parents. Years of caring for patients with schizophrenia ranged from 2 years to 27 years (Tables 1 and 2).
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Analysis and clustering of emerging themes resulted in three clear facilitating factors and four perceived barriers. With no exceptions, people with schizophrenia and caregivers shared remarkably similar perceptions of the facilitators and barriers related to self-management of schizophrenia.
Facilitating factors Family and peer support
The participants’ statements indicated that family support was a critical aspect of self-management, which they relied upon. Those with supportive family members reported good medication adherence. One participant with a 22-year history of schizophrenia reported: I always rely on my mother. She kept taking care of me for more than 20 years. Now she is almost 80 years old, but still she reminds me to take medication, takes me to every appointment, gets medication prescriptions, and keeps the medication for me. (Participant (P)2)
Besides increased medication adherence, the involvement of family members helped to monitor psychotic symptoms and to identify the early warning signs, so that early intervention could be implemented to prevent relapse. From the caregivers’ perspectives, the role of a family member can change, depending on the patient’s condition. For example, when a person was in a stable stage,
TABLE 1: Characteristics of patients participating in the interview People with schizophrenia 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21
Sex
Age (years)
Education
Currently employed
Duration of illness (years)
Female Male Female Female Male Male Male Male Female Female Male Female Male Male Male Male Female Female Male Female Female
38 42 27 52 53 46 37 41 36 42 25 52 51 59 28 33 36 34 29 43 39
University Middle school University Middle school Middle school Middle school Middle school Middle school Middle school University University Middle school Middle school Primary school Middle school Middle school University Middle school Middle school University Middle school
No No No No No No Part time No No No Part time No No No Part time Part time Part time No No No No
5 22 5 31 7 4 4 23 13 10 10 32 30 43 4 3 13 6 9 15 9
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H. ZOU ET AL. TABLE 2: Caregiver 1 2 3 4 5 6 7 8 9 10 11 12 13 14
Characteristics of caregivers participating in the interview Age
Sex
Relationship to patient
Education
Years of caring for patient
55 49 59 58 56 56 57 41 54 48 51 54 39 55
Female Male Female Male Female Male Female Female Female Male Female Female Male Male
Spouse Father Spouse Father Spouse Father Mother Spouse Mother Father Mather Mather Spouse Father
Middle school University Middle school University Middle school University University Middle school Middle school University University Middle school Middle school Middle school
24 2 18 25 27 4 9 11 5 4 4 11 16 9
caregivers encouraged them to become independent and to take some responsibility for their self-management, with the caregiver offering passive support. However, the caregivers were ready to be more active if necessary: I tried to encourage him (son) to take medication by himself, but he missed so much. Then I realized that it’s not possible to leave the full responsibility to him; I have to take a major role. (Caregiver (C)11)
Besides support from family, the participants expressed a desire for peers to assist them in managing their illness. They stated that they might benefit from peer support by ‘sharing information and experience’, ‘gaining knowledge’, and ‘receiving emotional support’ and ‘not feel lonely’: It’s hard to live with schizophrenia, even with my family who supports me very much. If somebody with the same illness encourages and supports me, that’s what has been most beneficial to me. (P1)
Positive relationship with health professionals
A positive relationship with health professionals was cited as an instrumental factor in managing schizophrenia. The participants’ statements revealed that they placed their trust in health professionals and would adhere to what they told them to do. Many people with schizophrenia said: ‘I don’t understand why I have to take medication’ or ‘It is tough taking so many pills’, but still they took the medication because of the advice of their doctors and nurses: My son has faith in his doctor. Whenever I want to increase the dose because his condition is not good, he will ask: ‘Did the doctor ask you to do that?’. I have to ask
his doctor to call him, and then he will agree to increase the dose. (C14)
The participants also expressed that a close relationship with health professionals increased confidence about managing their illness and maintaining hope: I have an appointment with my doctor every month. She always says: ‘You have the ability to manage your illness and your own life, you can have a normal life just like other people do . . . never give up’. I feel so encouraged. (P10)
Positive attitude towards self-management
Feeling confident, optimistic, and hopeful was important to the outcomes of the illness and key aspects of illness management. Most participants expressed great confidence in their self-management ability. Some regarded caring for themselves as an obligation, while others believed that they played the major role in selfmanagement, because they know themselves best, and they can be their ‘own best doctor’. When selfmanagement strategies were working well and appropriately, they often felt satisfied, which enhanced their confidence: I started learning things (self-management skills) to take care of myself, and the more I learned, the more it was helpful to me. When I compare myself to other people with schizophrenia, who are worse off, I understand that I can succeed, because I can control it, and I’m living well with it. (P20)
Some people expressed optimism during the long journey of fighting the illness. They tried to find positives, and avoid negative attitudes or negative people: © 2013 Australian College of Mental Health Nurses Inc.
SELF-MANAGEMENT FACILITATORS AND BARRIERS I have experienced five relapses during the past 9 years . . . but it’s ok for me; it didn’t ruin my life. . . . It’s now in remission. I can find a job, although it might not be decent, and I can talk to my friend. (P21)
Hope was an effective weapon for helping participants persist in illness self-management. Some participants maintained hope, because they saw the progress of the treatment, and they firmly believed that a more effective treatment for schizophrenia or a cure would be discovered. As one caregiver, whose husband had a 24-year history of illness, indicated: From what I have seen, the treatment has improved compared to 20 years ago. Now there are many therapies and new drugs you can choose . . . those drugs, they have less side-effects and are more effective. . . . I’m sure they (scientists) will find more effective treatment . . . one day people will find a cure for schizophrenia. (C1)
Perceived barriers Lack of knowledge and skills
The lack of knowledge and skills has made it difficult for people with schizophrenia and their caregivers to know how to manage the illness appropriately. One participant stated that ‘the biggest enemy of self-managing is lack of knowledge’. The participants specifically noted that the health-care information they received from nurses and/or other health professionals was not adequate and specific: I think that doctors and nurses only gave me general advice. I expected more detailed information from them, something concerning my own condition that would help me do the self-management in a proper way. (P21)
Caregivers also indicated that they needed relevant knowledge from health professionals. They expressed that they did not understand the illness because of a lack of relevant information. One caregiver said that their family had difficulty accepting the mental illness: We knew there was something wrong with him (son) many years ago, but we couldn’t accept that. There was no one with (a) mental illness from either my family or my husband’s family. It’s impossible he had that kind of disease. We just gave him some traditional Chinese medicine. We took him to a psychiatric hospital last year because we can’t control him at home. The doctors said it was too late. (C12)
Caregivers also expressed that they often misunderstood medication treatment because of a lack of relevant information. Some caregivers confessed that whenever patients’ symptoms disappeared after taking medicine, they would stop the medicine because they believed © 2013 Australian College of Mental Health Nurses Inc.
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that the patients were cured. Other caregivers expressed concern about the impact that the medication would have on people with schizophrenia. Some believed that there would be physical effects, such as the ‘medicine will damage patient’s liver, kidney, or memory’, while another feared that the patient ‘would become addicted to the medication’. As a result, some caregivers modified the treatment regimen, or even advised against medication. Financial constraint
Most of the participants in the study expressed concerns about their financial status because of a lack of savings, unemployment, low income, and lack of medical insurance. They worried that their financial problems might impede their ability to obtain adequate medication: I don’t have a job . . . I don’t have medical insurance. The only financial resource in my family is from my wife, who has a job with a low income. . . . Now I take the cheapest medication. If one day we don’t have enough money, I will have to decrease the dose or stop taking them. (P13)
Some people related how difficult it was to manage their psychiatric symptoms because of their inability to afford effective medication: I tried many medicines, but they are not effective. I still can hear the voices. My doctor said you can try the new drugs (atypical antipsychotic drugs); that might control your symptoms, but those medicines are really expensive, I can’t afford that. If I have enough money, I might be cured. (P19)
In addition, accessing health-care services was also a concern for some participants, especially those who were uninsured: It’s too expensive for him (husband) to seek hospitalization. The whole income of my family per month is only $US50, but the cost for one hospitalization is nearly $US500. How can I afford that? (C3)
Unable to meet the high cost, many families of uninsured patients were reluctant to seek inpatient care until the symptoms became unmanageable. Social stigma
The participants indicated that disclosing their illness to other people engendered, in most people, negative reactions and accompanying comments, such as ‘crazy’ or ‘stupid’. They stated that this negative social stigma contributed to their inability to effectively self-manage their illness. The participants indicated that it was difficult to take antipsychotic medication in public:
360 It’s very difficult for me to take medication at the office. People always ask me what you are eating. I tried many strategies to not let them know, such as change the bottle of the medicine, tell people I took traditional Chinese medicine to improve my immune system, even take medication (in the) bathroom. Finally, I was so tired of doing that and I just stopped taking it. (P9)
The stigma of mental illness and the cultural taboo of discussing mental illness in the Chinese community were also major impediments to seeking care after diagnosis: People make fun of me because I went to the psychiatric hospital . . . I’m so ashamed . . . I will never ever go to this sort of (psychiatric) hospital again. (P15) We are from the rural area of China. In our community, most people believe the ancestors of people with schizophrenia had bad morals. We have to protect our family’s face, so I took him (son) to a local Shaman for treatment after he was diagnosed with schizophrenia. (C9)
The stigma of schizophrenia also became a major obstacle in maintaining social relations. Most frequently, it was stated that the stigma imposed barriers for gaining employment and related professional roles. For some people, returning to one’s job after a period of psychiatric treatment was often accompanied by critical remarks, mistrust, and the denial of skills previously proven: I would really like to continue to work as a project manager, but they tell me that isn’t possible, because with the illness, I wouldn’t be capable of doing it. (P3)
Uncoordinated mental health services
The disruption of care between inpatient and outpatient settings was mentioned as a barrier. Many participants expressed their concerns about a lack of continuity of care, and emphasized the important role of health professionals in the community: No one cares about my illness and how I managed my illness after discharge. The community-based psychiatric services are useless. They just didn’t work. I have to go back to hospital every month only for refilling medication. Health professionals in the community could do more in terms of helping people manage their illness. (P18)
One caregiver, who has a daughter with a 25-year history of schizophrenia, stated: We (in China) lack an effective community network of mental health services. Community-based psychiatric services are very limited in terms of their numbers and function. For most serious mental illness, inpatient care is the most important part of treatment. (C4)
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However, most health professionals in inpatient services often struggle to spend time with people with schizophrenia: Nurses didn’t teach me anything when I was hospitalized. They just don’t have time. They are busy doing routine tasks and focusing on crisis care. They only gave me a one-page education sheet before I was discharged. (P4) There are not enough nurses. When I was hospitalized, there were only six-to-seven nurses caring for 60 patients in that ward. Do you think those nurses have time for education and counselling patients? (P11)
DISCUSSION Three key facilitators and four barriers emerged in the present study. Interestingly, with no exception, people with schizophrenia and their caregivers shared similar perceptions of the facilitators and barriers to selfmanagement. This is a notable finding, because it demonstrates a strong degree of family cohesion related to self-management.
Perceived facilitators Support from the family was identified as an enabler for performing self-management activities. This was not surprising, because Chinese people often place great value on the interdependence of family members. According to Chien and Chan (2004), the proportion of Chinese people with schizophrenia who live with their families is much higher than in Western countries. The findings of the present study are consistent with those in the English literature. For instance, Gallant (2003) demonstrated a modest, positive relationship between family support and illness self-management. Some studies have shown that individuals with schizophrenia living with relatives who are supportive are more likely to adhere to medications than those lacking family support (Fenton et al. 1997; Ramirez et al. 2006). Another study demonstrated that family support is valuable in increasing ongoing psychiatric symptom monitoring and identifying early signs for relapse among people with schizophrenia (Dixon et al. 2001). The present study confirms the importance of continued family supervision and involvement in patient selfmanagement. The finding that peer support is a facilitator for self-management is important, as most people with schizophrenia have small social networks with few opportunities to share their experiences with other people. Peers can therefore play an important role in offering emotional, informational support and hope. It was evident in the participants’ descriptions that a positive relationship with health professionals was a © 2013 Australian College of Mental Health Nurses Inc.
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facilitator to self-management. Previous studies concur with these findings that good communication and connection between health professionals and patients increase treatment adherence, and thereby improve results (Carr 2001). The current study revealed that participants trust health professionals. This could be explained by the fact that health professionals are a revered group in Chinese culture, whose prestige is conferred by their professional status and ability to save lives. Such positive regard likely results in the strong tendency for Chinese people to comply with whatever health professionals recommend. Therefore, support from health professionals should play an important role in self-management. In addition to offering emotional support, health professionals can help equip people with schizophrenia and caregivers with self-management skills, such as medication management, symptom management, utilizing health information and resources, and maintaining social relations. Another facilitator identified in this study was the positive attitude towards self-management. Most participants expressed confidence in their self-management ability, and were optimistic and persistently hopeful. These results are in contrast with Stewart et al.’s (2010), which found that people with schizophrenia had no desire to be involved in self-management (Stewart et al. 2010). Although people with schizophrenia in China experience stigma because of their illness, they also receive strong support from their families and from health professionals. This support becomes central in self-management, and helps maintain very positive attitudes towards illness management. Another possible explanation might be that the confidence exhibited by these participants might have reflected their preference for saving face or preserving social integrity by saying what is desirable. This phenomenon has a strong psychological impact on behaviour in shame-based countries, such as China.
Perceived barriers One of the most common themes that this study identified as a barrier to self-management by both people with schizophrenia and caregivers was a lack of knowledge and skills. All participants described a need for more selfmanagement education, which suggests that there is still a large gap in knowledge in this community. Clearly, patients need to receive adequate and specific information. In addition, people with schizophrenia need individualized information about their illness in order for them to have a personal understanding and acceptance of their condition. It is vital for them to comprehend that they can actually manage their illness and daily life. Caregivers also need relevant information to help them effec© 2013 Australian College of Mental Health Nurses Inc.
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tively support or reinforce their relative’s initiatives in terms of self-management, as caregiver instructions and supervision impact patient adherence to the therapeutic regime. Financial constraints were identified as a barrier to self-management. Similarly, Chan et al. (2007) demonstrated that more than half of the participants in their Hong Kong and Taipei study lived below the poverty line. Thirty percent of Taipei people with schizophrenia had no income at all (Chan et al. 2007). With a limited budget, people with schizophrenia struggle to afford adequate and effective medication, medical care, and hospitalization. Without proper illness management, the risk of relapse increases greatly. According to a Chinese study, the relapse rate for people with schizophrenia who had poor financial support was nearly five times that of people who had enough financial support (Liang et al. 2001). This finding echoes the need for the government to examine the social welfare system to find better ways to financially support people with mental illness. The participants faced intense stigma, which noticeably impinged on self-management. In Chinese culture, it is taboo to discuss mental illness in the community. People with mental illness and their families often feel ashamed about talking about the illness outside of their family, and even within the family. Further, the public lack of awareness of mental illness intensifies the stigma associated with schizophrenia, and undermines attempts to manage the situation and maintain important activities, such as seeking medical care, seeking peer support, finding a job, and finding a partner. This phenomenon of stigmatization is not unique to China. Research published in the English literature reveals that stigma associated with schizophrenia leads to delayed help-seeking behaviour, limits life chances, and creates social isolation (Angermeyer et al. 1999). Studies have shown that over 85% of people with schizophrenia are unemployed (Marwaha & Johnson 2004), despite the fact that most want to work (Mueser et al. 2001) and are capable of working in competitive jobs (Bond et al. 2001). Avoiding stigma and enhancing social integration are also some of the most important and complex aspects in the rehabilitation of these individuals (Kilian et al. 2001). Therefore, developing antistigma programmes intended to reduce prejudice and discrimination towards individuals with schizophrenia in China is a pressing need. Efforts can be made by developing stigma-coping skills for both people with schizophrenia and their families to enhance their self-esteem and give them a sense of empowerment; educating the public with the relevant information about mental illness and schizophrenia; increasing awareness
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about the illness and decreasing prejudice; and finally, cooperating with the media to effectively counteract negative media coverage and supply correct and stigmafree information to the public. Uncoordinated mental health services were identified as barriers to self-management in the present study. The participants expressed concerns about a lack of continuity of care, and emphasized the importance of community rehabilitation. They expressed their need for follow up and continuous education about self-management. This finding calls for improved continuity of care and rehabilitation. Health policy makers in China should consider developing an effective community network of mental health services to help build community-based psychiatric rehabilitation programmes for people with schizophrenia, so that the programmes can assist patients and their families beyond the walls of the hospital in the patients’ recovery. This is important, as psychosis is often an enduring or relapsing illness, and individuals’ willingness to engage in illness management in the medium-to-long term can be dependent on how services are provided (Corcoran et al. 2007).
Strengths and limitation Individuals with schizophrenia contributed directly to the study, thus we eliminated the need to rely on secondhand information from health professionals. The present study provides unique insight into the perceived facilitators and barriers facing Chinese people with schizophrenia and their caregivers regarding self-management. Second, because of the privacy and depth of the individual interviews, the participants felt comfortable and appeared willing and able to express their opinions on the topics introduced. Furthermore, the participants spanned a wide range of age and duration of illness, and all had significant experience with self-management. Despite these strengths, there was one major limitation. It is likely that the study is biased towards positivity, because optimists and people with initiative might have been more willing to volunteer. Those who declined participation might have had more negative experiences with self-management, which could have led to a discussion of different facilitators, and in particular, additional barriers not revealed here. Therefore, it is possible that the authors were not able to capture all possible perspectives on what makes self-management more or less difficult for Chinese people with schizophrenia.
Recommendations for future research Two directions for further research are suggested. First, future studies should involve larger samples and should
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be directed towards the development of culturallysensitive instruments that objectively measure selfmanagement among Chinese people with schizophrenia. There are some instruments measuring self-management among people with schizophrenia; however, it should be noted that cultural norms and values might influence self-management perception and practice. Therefore, self-management instruments reported in Western literature might not apply to the Chinese population. The next step should then be to develop family-based, culturallyappropriate and comprehensive interventions that intend to promote self-management among Chinese people with schizophrenia and their caregivers, based on the findings of the current study.
Implication for practice The findings from the present study could help nurses recognize what factors influence self-management among people with schizophrenia, and might support nurses and other health professionals in initiating and implementing family-based, self-management programmes for Chinese people with schizophrenia and their families. The findings also call for the development of antistigma programmes intended to reduce prejudice and discrimination towards individuals with schizophrenia in China, by enhancing stigma-coping skills for patients and their families, educating the public, and using media to increase public awareness and decrease negative images. Finally, the present study provides information to health policy makers in China to make potential changes in mental health services in order to better meet the needs of Chinese people with schizophrenia.
CONCLUSION In the present study, a variety of perceived facilitators and barriers to self-management among Chinese people with schizophrenia and their caregivers was identified. Based on the results, it is apparent that the current system needs to provide more support and self-management intervention programmes for people with schizophrenia and their families. The public should also be educated in order to decrease stigma of schizophrenia, and health policy makers are called upon to make changes in the delivery of mental health services.
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