International Journal of Mental Health Nursing (2014) 23, 355363 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
School of Nursing, Peking Union Medical College, 3Beijing An Ding Hospital, Capital Medical University, Beijing,
1

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 schizophre-
nia. 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 Recently, the Schizophrenia Patient Outcomes

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 1544-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: zhengli@hotmail.com
Haiou Zou, PhD.
Zheng Li, PhD.
David Arthur, PhD.
Hongxing Wang, MD.
Accepted November 2013.
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 out-
comes are difficult or impossible to achieve.
Although some researchers doubt the self-
management 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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356
related to medication use (Kampman et al. 2002; Marland
& Cash 2005), but also have the capacity to manage psy-
chotic symptoms (Shepherd et al. 2010). However, a gap
exists in the literature in the exploration of these self-
management issues in terms of the facilitators and barri-
ers 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 preva-
lence of schizophrenia and its sociodemographic corre-
lates 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 nega-
tively on the health-care system, and innovative manage-
ment 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 under-
standing 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 con-
ducted 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
H. ZOU ET AL.
data saturation during the data analysis process. Thirty-
five 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 schizo-
phrenia 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. Partici-
pants 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 speak-
ing. 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 post-
graduate student read the material a number of times to
become immersed in the data. Data were analysed by the
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SELF-MANAGEMENT FACILITATORS AND BARRIERS 357

first author and the postgraduate student independently
using Collazzis qualitative methodology. The process was
consistent with Collazzis methodology for extracting sig-
nificant statements, formulating meanings, and organizing
clusters of themes. Consensus meetings were held to
discuss the analysis and resolve disagreements. If con-
sensus 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 trans-
lated into English by the first author. Another author, who
is a native English speaker and a researcher with quali-
tative 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
Analysis and clustering of emerging themes resulted
in three clear facilitating factors and four perceived bar-
riers. 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)

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).
Besides increased medication adherence, the involve-
ment 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 patients condi-
tion. For example, when a person was in a stable stage,

TABLE 1: Characteristics of patients participating in the interview

People with Age Currently Duration of
schizophrenia Sex (years) Education employed illness (years)

1 Female 38 University No 5
2 Male 42 Middle school No 22
3 Female 27 University No 5
4 Female 52 Middle school No 31
5 Male 53 Middle school No 7
6 Male 46 Middle school No 4
7 Male 37 Middle school Part time 4
8 Male 41 Middle school No 23
9 Female 36 Middle school No 13
10 Female 42 University No 10
11 Male 25 University Part time 10
12 Female 52 Middle school No 32
13 Male 51 Middle school No 30
14 Male 59 Primary school No 43
15 Male 28 Middle school Part time 4
16 Male 33 Middle school Part time 3
17 Female 36 University Part time 13
18 Female 34 Middle school No 6
19 Male 29 Middle school No 9
20 Female 43 University No 15
21 Female 39 Middle school No 9

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358 H. ZOU ET AL.

TABLE 2: Characteristics of caregivers participating in the interview

Relationship Years of caring
Caregiver Age Sex to patient Education for patient

1 55 Female Spouse Middle school 24

2 49 Male Father University 2
3 59 Female Spouse Middle school 18
4 58 Male Father University 25
5 56 Female Spouse Middle school 27
6 56 Male Father University 4
7 57 Female Mother University 9
8 41 Female Spouse Middle school 11
9 54 Female Mother Middle school 5
10 48 Male Father University 4
11 51 Female Mather University 4
12 54 Female Mather Middle school 11
13 39 Male Spouse Middle school 16
14 55 Male Father Middle school 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 its
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 knowl-
edge, and receiving emotional support and not feel
lonely:
Its hard to live with schizophrenia, even with my family
who supports me very much. If somebody with the same
illness encourages and supports me, thats 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 dont 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:
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 confi-
dence in their self-management ability. Some regarded
caring for themselves as an obligation, while others
believed that they played the major role in self-
management, because they know themselves best, and
they can be their own best doctor. When self-
management strategies were working well and appro-
priately, 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 Im living well
with it. (P20)

My son has faith in his doctor. Whenever I want to Some people expressed optimism during the long journey
increase the dose because his condition is not good, he of fighting the illness. They tried to find positives, and
will ask: Did the doctor ask you to do that?. I have to ask avoid negative attitudes or negative people:

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SELF-MANAGEMENT FACILITATORS AND BARRIERS
I have experienced five relapses during the past 9 years
. . . but its ok for me; it didnt ruin my life.... Its 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 discov-
ered. 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.... Im 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 couldnt accept that. There was no
one with (a) mental illness from either my family or my
husbands family. Its impossible he had that kind of
disease. We just gave him some traditional Chinese medi-
cine. We took him to a psychiatric hospital last year
because we cant control him at home. The doctors said it
was too late. (C12)
Caregivers also expressed that they often misunder-
stood 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.
359
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 patients liver, kidney, or memory, while
another feared that the patient would become addicted
to the medication. As a result, some caregivers modi-
fied 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 insur-
ance. They worried that their financial problems might
impede their ability to obtain adequate medication:
I dont have a job . . . I dont 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 dont 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 cant 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:
Its too expensive for him (husband) to seek hospitaliza-
tion. 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 reac-
tions and accompanying comments, such as crazy or
stupid. They stated that this negative social stigma con-
tributed to their inability to effectively self-manage their
illness. The participants indicated that it was difficult to
take antipsychotic medication in public:
360
Its 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 medi-
cation (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 commu-
nity were also major impediments to seeking care after
diagnosis:
People make fun of me because I went to the psychiatric
hospital . . . Im 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 schizo-
phrenia had bad morals. We have to protect our familys
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 ones 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 isnt possible, because with
the illness, I wouldnt 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 profes-
sionals 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 didnt 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)
H. ZOU ET AL.
However, most health professionals in inpatient ser-
vices often struggle to spend time with people with
schizophrenia:
Nurses didnt teach me anything when I was hospitalized.
They just dont 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 self-
management. This is a notable finding, because it dem-
onstrates 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 sur-
prising, 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 psychiat-
ric symptom monitoring and identifying early signs for
relapse among people with schizophrenia (Dixon et al.
2001). The present study confirms the importance of con-
tinued family supervision and involvement in patient self-
management. The finding that peer support is a facilitator
for self-management is important, as most people with
schizophrenia have small social networks with few oppor-
tunities 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
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SELF-MANAGEMENT FACILITATORS AND BARRIERS
facilitator to self-management. Previous studies concur
with these findings that good communication and connec-
tion 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 posi-
tive 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 man-
agement. 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 phenom-
enon 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 self-
management education, which suggests that there is still
a large gap in knowledge in this community. Clearly,
patients need to receive adequate and specific informa-
tion. In addition, people with schizophrenia need indi-
vidualized 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. Care-
givers also need relevant information to help them effec-
2013 Australian College of Mental Health Nurses Inc.
361
tively support or reinforce their relatives 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) demon-
strated 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 hospitaliza-
tion. 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 notice-
ably 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 activi-
ties, 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 behav-
iour, 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 rehabili-
tation 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
362
about the illness and decreasing prejudice; and finally,
cooperating with the media to effectively counteract
negative media coverage and supply correct and stigma-
free 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 rehabili-
tation. 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 fami-
lies beyond the walls of the hospital in the patients recov-
ery. 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 second-
hand information from health professionals. The present
study provides unique insight into the perceived facilita-
tors and barriers facing Chinese people with schizophre-
nia and their caregivers regarding self-management.
Second, because of the privacy and depth of the indivi-
dual 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 limita-
tion. 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 par-
ticipation might have had more negative experiences with
self-management, which could have led to a discussion
of different facilitators, and in particular, additional bar-
riers 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
H. ZOU ET AL.
be directed towards the development of culturally-
sensitive instruments that objectively measure self-
management 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 litera-
ture might not apply to the Chinese population. The next
step should then be to develop family-based, culturally-
appropriate 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, edu-
cating 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 inter-
vention 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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