International Journal of Nursing Studies 94 (2019) 1–8

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International Journal of Nursing Studies

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Living on the edge: Family caregivers' experiences of caring for

post-stroke family members in China: A qualitative study
Qi Lua,b,* , Jan Mårtenssonc, Yue Zhaod , Linda Johanssone
a
School of Health and Welfare, Jönköping University, Jönköping, Sweden
b
School of Nursing, Tianjin Medical University, China
c
School of Health and Welfare, Jönköping University, Department of Nursing, Box 1026, SE-551 11, Jönköping, Sweden
d
School of Nursing, Tianjin Medical University, No. 22 Qixiangtai Road, Heping District, Tianjin, 300070, China
e
School of Health and Welfare, Jönköping University, Institute of Gerontology, Box 1026, SE-551 11, Jönköping, Sweden

A R T I C L E I N F O A B S T R A C T

Article history: Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive,
Received 16 July 2018 and emotional impairment. Because of traditional Chinese culture and the limited development of the
Received in revised form 18 February 2019 primary healthcare system, most stroke survivors are cared for and live with their family after hospital
Accepted 23 February 2019
discharge. However, previous literature shows a lack of qualitative studies on family caregivers’
experience of caring for their relatives in China.
Keywords: Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke
China
survivors in China.
Experience
Family caregiver
Methods: An explorative design was used wherein qualitative semi-structured interviews were
Interview conducted with family caregivers in China. Family caregivers were selected from one city and three
Qualitative research communities using a purposive sampling method until no new data were generated (n = 26). A thematic
Stroke analysis was used for the data analysis in this study.
Findings: Family caregivers’ experience was described as living on the edge, which pulled their lives in
multiple directions, created an unstable situation, and reduced their well-being and health. The
participants believed they had total responsibility and felt that this was expected from both themselves
and society. Little external understanding and insufficient support was emphasised, resulting in the
caregivers feeling all alone,drained by caring, and like prisoners in their own lives. The family caregivers had
to face all of the family events and make all of the decisions by themselves. They expressed love for their
family members with stroke, but this was often overshadowed by feelings of sadness, depression,
sensitivity, and anger. This resulted in an inability to see how things could improve and in the family
caregivers being uncertain about the future.
Conclusion: All of these findings increased understanding and added knowledge of this topic that has
been seldom studied in China. Healthcare authorities and professionals should recognise and understand
the lives and situations of family caregivers since their relatives had a stroke to further identify their
difficulties and needs. Appropriate and effective support, both from government and society, should be
planned and implemented for family caregivers to relieve them from caring for their relatives with stroke
and maintaining the quality of their own lives.
© 2019 Elsevier Ltd. All rights reserved.

What is already known about the topic?

Stroke has a great impact on peoples’ lives and can increase

dependency on others. Most stroke survivors live with their
* Corresponding author at: School of Nursing, Tianjin Medical University, No. 22 families and are dependent on their care after hospital discharge.
Qixiangtai Road, Heping District, Tianjin, 300070, China.

A higher prevalence of physical and mental health difficulties is
E-mail addresses: [email protected] (Q. Lu), [email protected]
(J. Mårtensson), [email protected] (Y. Zhao), [email protected] experienced by family caregivers of stroke survivors than the
(L. Johansson). general population.

https://doi.org/10.1016/j.ijnurstu.2019.02.016
0020-7489/© 2019 Elsevier Ltd. All rights reserved.
2 Q. Lu et al. / International Journal of Nursing Studies 94 (2019) 1–8

Traditional Chinese culture and the limited development of the improvement systems, and poor performance in the control of risk
primary healthcare system bring burdens and challenges to family factors within the primary healthcare system (Li et al., 2017).
caregivers who care for their relatives experienced a stroke. Meanwhile, filial piety and familism play vital roles in the Chinese

In China, most research on family caregivers of stroke survivors context, which encourages children and spouses to assume all of
has been conducted using quantitative methods, where the the responsibilities and obligations of caring for the relative who
experience of family caregivers is predefined. Little is known has experienced a stroke (Qiu et al., 2018). It is reasonable to
about Chinese family caregivers’ experiences of caring for stroke assume that these factors have an effect on the health and well-
survivors. being of family caregivers. It has been reported that 45% of family
caregivers of hospitalised stroke survivors in China experience
depressive symptoms (Qiu and Li, 2009) and 64% experience work
What this paper adds and financial burdens (Jiang and Wang, 2007). Significantly higher
physical, psychological, and social burdens on family caregivers of

Increased understanding and added knowledge of the experi- stroke survivors than the general population have also been
ences of family caregivers caring for stroke survivors in China reported (Pang et al., 2005; Yang et al., 2005).
have been rarely studied. However, there are few studies on stroke survivors’ family

Family caregivers’ experiences were described as living on the caregivers in China (Lv et al., 2016; Liu and Wang, 2016). Most
edge. Their lives were pulled in multiple directions, creating an research on family caregivers of stroke survivors has been
unstable situation as well as decreased well-being and health. conducted using quantitative methods, whereby the experience

The need to develop better care and support for family caregivers of family caregivers is predefined (Liu and Wang, 2016). Therefore,
was addressed. Healthcare authorities and primary healthcare little is known about family caregivers’ life situation when caring
providers should pay more attention to this group of people and for stroke survivors (Han et al., 2017) from an inside perspective.
contribute to improving their health and lives. Hence, this study explored the experience of family caregivers
taking care of stroke survivors in China.

1. Introduction 2. Methods

Stroke is the second most common cause of death (CDC, 2017) 2.1. Design
and is responsible for a considerable proportion of health problems
in both developed and developing countries (Deng et al., 2017). An explorative design (Braun and Clarke, 2006) was used
Approximately 15 million people have a stroke annually, and wherein qualitative semi-structured interviews with family care-
one-third suffer permanent physical, cognitive, and emotional givers were conducted.
impairment (WHO, 2017).
Over the past few decades in China, due to peoples’ lifestyles 2.2. Participants
and the changing environment, the population with chronic
diseases has increased. As a result of the high prevalence of Family caregivers of those with stroke after hospital discharge
hypertension, diabetes, and cardiovascular disease, stroke has from three communities in Tianjin, China, with 11 million
become a major cause of death (Sun et al., 2016). There are more inhabitants between October 2014 and April 2015 were asked to
than 2.4 million new stroke victims each year (Sun et al., 2016). participate. According to the residents’ community health
Approximately 70–80% lose their ability to work to some extent, management records, potential participants were identified and
40% have moderate dysfunction, and 15–30% have severe contacted by community nurses. A purposive sampling method
disabilities (Sun et al., 2016). was used to select the participants. The inclusion criteria in this
Stroke not only affects the person’s entire life, but also study were that the caregiver must be 18 years old or older, be able
influences the lives of family caregivers (Zheng et al., 2014). The to speak and understand Mandarin, have the main responsibility of
World Health Organisation (WHO) (2011) stated that family caring for the person with stroke, and be related by blood or
support is essential for dependent persons. Globally and across marriage to the person and provide care free of charge. All of the 26
high-income countries, families are responsible for approximately family caregivers asked to participate in this study chose to do so
80% of the support needs. In most families, children and spouses and no one withdrew their participation during the study process.
provide the main caregiving (WHO, 2011). Caregiving is not solely a The characteristics of the caregivers and the person they cared for
task-oriented activity, but a process that interacts with multidi- are presented in Table 1.
mensional aspects and coping adjustments made by family
caregivers (Lee, 2004). For instance, family caregivers assist with 2.3. Data collection
hygiene, give comfort, help with feeding, encourage rehabilitation
activities, and interact with the therapeutic team (Santos Souza The participants were briefed about this study and informed of
and Lima Argimon, 2014). There is a higher prevalence of mental their right to withdraw from participation at any time by nurses in
health problems such as depression and anxiety reported by the community hospitals. If the participants agreed to take part in
caregivers of stroke survivors than among the general population the study, the first author (QL) obtained their phone numbers from
(Balhara et al., 2012; Visser-Meily et al., 2008). Also, caregivers the community nurses and made appointments. In order to
often experience poor physical health and reduced energy, generate rich data about the family caregivers’ experiences taking
including sleeping difficulties, weight loss, fatigue, and increased care of their relatives who had experienced a stroke, individual
risk of chronic diseases (Parag et al., 2008; Legg et al., 2013). semi-structured interviews were conducted by the first author
Because of traditional Chinese culture and the limited (QL). QL is a nurse with clinical experience working with stroke
development of the primary healthcare system, approximately survivors and their families. The interview setting was chosen by
80% of stroke survivors are cared for and live with their family after the participants and all of the interviews were conducted face to
hospital discharge (Bai et al., 2008). Healthcare support for stroke face and audio recorded either at the participants’ homes or in a
survivors in China is deficient due to inadequate workforce treatment room in the community hospitals. Written informed
qualifications, fragmented health information, insufficient quality consent was provided at the beginning of the interviews and
 Q. Lu et al. / International Journal of Nursing Studies 94 (2019) 1–8 3

Table 1
Characteristics of the family caregivers and stroke survivors.

No. Gender Age Educational levela Occupationb Length of care Relationship to stroke ADL of stroke Stroke survivors involved
survivors survivorsc in the interview
1 M 47 Low Blue collar 20Y Son 4 Yes
2 F 73 Medium White collar 8M Wife 2 No
3 F 65 High White collar 7Y Wife 4 No
4 F 74 Medium Blue collar 5Y Wife 1 Yes
5 F 49 Low Blue collar 1Y-7M Daughter 4 No
6 M 73 Low Blue collar 1Y-11M Husband 2 Yes
7 F 68 Medium White collar 4Y Wife 2 Yes
8 F 61 High White collar 10Y Wife 1 Yes
9 M 82 High White collar 10Y Husband 1 Yes
10 F 68 Low Blue collar 2M Wife 3 No
11 F 63 Low Blue collar 1Y-3M Wife 3 No
12 F 68 Low Blue collar 4M Wife 3 No
13 M 80 Low Blue collar 3M Husband 4 Yes
14 F 75 Low Blue collar 12Y Wife 4 No
15 F 58 Low Blue collar 13Y Wife 3 No
16 F 52 Medium White collar 8Y Wife 4 No
17 F 60 Medium White collar 2Y-8M Wife 4 No
18 F 54 Low Blue collar 8Y Wife 2 Yes
19 F 75 High White collar 7Y Wife 2 No
20 F 66 Low Blue collar 4Y Wife 2 No
21 F 44 Low Blue collar 2Y Daughter-in-law 1 Yes
22 F 45 Medium Blue collar 3Y Daughter 1 Yes
23 F 59 Low Blue collar 6Y Wife 3 No
24 F 27 Medium Unemployed 3Y Daughter 2 Yes
25 M 67 Low Blue collar 3Y Husband 4 No
26 M 76 Medium White collar 35Y Husband 4 No
a
Low: elementary school or low vocational education. Medium: secondary school or intermediate vocational education. High: higher vocational education or university
education.
b
Blue collar: manual worker; white collar: clerical worker.
c
1: Barthel60, basically independent. 2: 41  Barthel59, moderate dysfunction, needs help. 3: 21  Barthel40, severe dysfunction, obviously dependent. 4: Barthel20,
completely dependent.

signed by the participants. Of 26 interviews, 11 of the participants fluent in both Mandarin and English, translated the first three
were interviewed with the stroke survivors present in the room. interviews into English to make the data available to all of the
The median length of the interviews was 50 min (range 28–136). authors. These three interviews were read multiple times by all of the
An interview guide was developed and confirmed in the author authors in order to become familiar with the data and gain deeper
group, as well as pilot tested in the first three interviews, which understanding of the content. In these interviews, all of the authors
resulted in some minor revisions. As these interviews were independently highlighted data extracts in line with the aim of the
considered high quality, provided relevant information, and the study and then discussed them to reach a consensus. Then the first
revision, were minor, they were later included in the data analysis. author (QL) identified the data extracts in line with the aim for the
Each interview started with the broad question “What is your other 23 interviews and translated all of the data extracts into
experience of caring for your relative who experienced a stroke?” English. This translation was double-checked by the third author
The interview guide then included several areas to deepen the (YZ). The first (QL), second (JM), and last authors (LJ) then continued
knowledge of caregiver experience, including the caregiving the data analysis by independently coding the data extracts from all
experience during the acute period of stroke, caring after discharge of the interviews. This was accomplished by writing notes and codes
from the hospital, and the effects on the life situation and in the margins of the extracts. Several meetings were held among the
relationship. In order to encourage the participants to describe authors to discuss and reach agreement on the coding. An initial
their experiences as much as possible, follow-up questions were thematic map was created based on the coding in order to form
also asked such as “What happened next?,” “What were you themes. Across the data set, all of the authors found a sense of
thinking then?,” “How did that effect you?,” and “What do you significance and relationships between the different themes. These
mean by that?” themes were discussed, reviewed, and defined until agreement was
reached. Finally, one main theme and five sub-themes reflecting the
2.4. Data analysis content of the interviews were developed.

In the end, 26 interviews were conducted and included in the 2.5. Ethical considerations
analysis. In the last three interviews, no new data were generated,
suggesting that sufficient data had been obtained to describe the This study was conducted in accordance with the Declaration of
topic. This study used a thematic analysis, which is a data-driven Helsinki (WMA, 1964). Ethical approval was granted by the Tianjin
method for identifying, analysing, and reporting patterns within Medical University Ethical Committee (TMUEC201400202), China.
data. Braun and Clarke (2006) stated that a thematic analysis can be Informed consent was obtained from both the family caregivers
used to find patterns in qualitative data and highlighted six phases: and their relatives with stroke. In line with beneficence and
becoming familiar with the data, generating initial codes, searching maleficence principles, it was decided beforehand that if the
for themes, reviewing themes, defining and naming themes, and participant thought that the interview was affecting them
producing the report. Audio recordings of the interviews were negatively, it would be stopped immediately. Only the interviewer
transcribed verbatim by the first author (QL), and the third author knew the participants’ identities, while the other researchers
(YZ) double-checked the transcripts. The first author (QL), who is worked with anonymous data transcripts. All of the data were
4 Q. Lu et al. / International Journal of Nursing Studies 94 (2019) 1–8

stored on a password-protected hard drive and used only for this These opinions were not expressed by the female spouse
project. In addition, no one outside the research group had access caregivers. Instead, they highlighted that they were overwhelmed
to the collected data. The participants who were interested in by other types of household chores such as fixing electrical and
taking part of the result were informed that they could obtain the financial problems. Facing these new tasks and making decisions
results later, but only as aggregated data. alone meant that even after many years, some still could not
manage these tasks very well.
3. Results “ . . . I still cannot get used to the change. In the past, my
husband arranged and dealt with everything in my family. He
3.1. Living on the edge was the one making decisions. I did not worry about any
household chores. Suddenly, he fell ill . . . then everything is my
From an overall perspective, the family caregivers of those with duty, I cannot accept and handle it . . . ” (P15, wife)
stroke mostly described a sombre picture of their daily lives.
Caregiving affected them physically, psychologically, and socially Overload responsibility was not only composed of increased
to such a degree that they were living on the edge of what they were daily activities and caring for the person with stroke, but also guilt
able to manage. Their lives were pulled in multiple directions, toward other close relatives, especially children and parents. This
creating an unstable situation as well as decreased well-being and was because the family caregivers felt that they did not have
health. This was related to the participants having total responsi- enough time to care for others as well and this affected their
bility for caring for their relatives who had experienced a stroke. parents’ and children’s lives to a great extent. This feeling and
They believed they had this responsibility but also felt that this was consideration sometimes led caregivers to assume even more
expected of people in their surroundings as well as from society. responsibilities:
Little external understanding and insufficient support was “ . . . my son’s work is quite busy, but he has no choice, he has to
emphasised, resulting in the caregivers feeling as being all alone help me take his father to the hospital, he brought his laptop to
as well as feeling drained by caregiving and as being a prisoner in work while at the hospital. However, the company still cut his
their own life. That is, caregiving negatively affected their own pay even though he completed the work. I feel very guilty. I did
health and social lives. The family caregivers had to face all of the not give him any help, instead we affect his career development
events in their families and make all of the decisions by so much . . . But . . . what else can I do? . . . (eyes turn red)”
themselves. They expressed love and affection for the person (P3, wife)
with stroke, but this was often overshadowed by feelings of
3.1.2. Being all alone
sadness, depression, sensitivity, and anger. This resulted in an
The family caregivers described different degrees of
inability to see how things could be improved and in the family
loneliness and isolation when taking care of the stroke survivors.
caregivers being uncertain about the future. This state of living on the
The source of loneliness and isolation included a lack of
edge was described by a wife as follows:
support and understanding from close family and friends as well
“ . . . sometimes, I cannot control myself well. ‘Just die’ I shout
as society.
at him. ‘Go and die, die, to die . . . Why don’t you die? Do you
“At the beginning, my relatives and friends gave me some
want to live? If you want to, just do well.’ After I shouted, I
money to live, to pay my child’s tuition fee . . . but gradually, no
looked at him, and thought how pitiful he was. I still have to
one can always be there to help me. I have to take care of him, so
take care of him. It is my duty . . . ” (P23, wife)
I can’t continue to work, and have no income. The government
really should consider how to help families like us to survive .
3.1.1. Having total responsibility . . ” (P16, wife)
The stroke and its consequences resulted in a different situation
Lack of support also meant that no one guided them or helped
for the whole family. Family caregivers described that they had the
them care for those with stroke. Additionally, the caregivers
responsibility to both make things work in daily life as well as take
reported difficulties in obtaining understanding from others, both
care of the person who had experienced a stroke when (s)he
for themselves and the stroke survivors.
become dependent. For instance, there were changes related to
“ . . . Many people comforted me, but I knew they did not
decreased family income and those with stroke having difficulties
experience the event I was suffering. Even if I told them what
performing household tasks. Family caregivers said that they felt
happened on me, they would listen like they were hearing a
that they had the responsibility to manage this new situation and
story . . . Only if this really happened to them, they would know
that this was also expected from close family members as no one
it is not a story but a calamity . . . ” (P17, wife)
else could take on these tasks:
“I have to take full responsibility . . . I have to deal with At the same time, the family caregivers expressed that they did
everything. I can’t, I can’t interfere with my wife’s work. The not trust others to care for the person who had experienced a
whole family, elder and little, we all depend on her income. She stroke. They felt that they actually were the best suited person for
must not lose her job.” (P1, son) this responsibility, which resulted in increased burdens.
“ . . . Others . . . I cannot trust others to take care of my
Adapting to these life transitions and having this increased
wife . . . I needn’t. I can deal with it myself.” (P25, husband)
responsibility became a great challenge. After starting to take care
of the person who had experienced a stroke, family caregivers felt However, some of the family caregivers said that they received
that the daily household duties had increased. Male spouse adequate support and help from their wider family, friends,
caregivers especially stated that they had taken over activities such healthcare professionals, society, and other caregivers in the same
as cooking and washing and found them difficult to manage. situation, especially during the acute post-stroke period. This
“ . . . I have never done housework before. All the housework support enabled the family caregivers to more positively face and
was my wife’s business. I didn't care about buying food at all for accept their life transition.
years. So many years, I have never been to the grocery store. But “In the hospital, the doctor gave me a lot of information about
now, I have to do grocery shopping myself . . . and learn to cook, his condition and wrote a letter to me. Very nice. In the ward,
do laundry, and all the housework . . . Although my cooking is we had good relationships with the other patients’ families, we
still bad.” (P13, husband) helped each other, shared food, and so on . . . ” (P8, wife)
 Q. Lu et al. / International Journal of Nursing Studies 94 (2019) 1–8 5

3.1.3. Drained by caregiving “It is really working-age for me, and I really want to work to
After hospital discharge, the family caregivers realised that reduce the financial burden on my family, but I can’t go to
their health condition had worsened. All of the family caregivers work . . . I would take any job no matter how hard the work
described in detail what they did for the stroke survivors every day. would be, even delivering newspapers, it doesn’t matter. My
Moreover, they believed this led to their own decreased well-being friends encouraged me to work, but I cannot . . . I cannot leave
and declining health, both physically and psychologically. Physical home . . . ” (P1, son)
pain in their wrists, shoulders, waists, and backs resulted from the
family caregivers assisting and moving those with stroke.
“ . . . My wrists hurt, once he fell on the floor, I tried to pull him 3.1.5. Being uncertain about the future
up several times without success. He kept sitting back on the Uncertainty about the future was raised by the family caregivers
floor again and again, and my wrists started to hurt. One month during the interviews. The future was often described in negative
later, the pain in my wrists was getting a little better . . . ” (P14, words, such as fear, helplessness, and hopelessness. “ . . . hope is
wife) useless . . . the more you dream, the less you get in reality . . . no
expectations, no disappointment . . . ” (P24, daughter).
Caring for and worrying that the person might suddenly die led The family caregivers suffered from anxiety about the future.
to rapid weight loss as well as trouble sleeping. “ . . . when he was This was related to them not knowing when and if the stroke
in the hospital for two weeks, I lost five kilos in weight, I do not know survivors would recover or for how long they would have to keep
how I lost weight . . . ” (P12, wife). Moreover, due to a lack of caring for and supporting their spouses or parents. The family
adequate and effective support from family and society, their caregivers also reported that they did not know who would care for
emotional status became unstable and sensitive. Some caregivers those with stroke if their caregivers became too old or frail, which
reported that they became angry or sad much easier than before filled them with fear and anxiety. Sometimes they said that death
they started caring for their relatives who had experienced a might be the best way to solve all of their problems and ease their
stroke. pain. Hence, suicide was sometimes mentioned as a solution:
Emotional pressure was also mentioned. For instance, some “What is the meaning in my life? My whole life has been
described that the acute period of stroke in the hospital caused wasted, no significance of living. What is my life all about? Why
them extreme hardship. They referred not only to increased am I alive? You tell me. Is life interesting? Is life full of meaning?
physical burdens, but also to greater mental distress. This was I really want to jump off a building, just die, so tired (shaking
related to the sudden threat of death and that they had to make all head) . . . ” (P25, husband)
of the decisions for the stroke survivors regarding treatment,
which was a new situation that they had not faced before and
therefore lacked knowledge about. Some of the participants did 3.2. Discussion of methodological rigour
not want to recall the time in the hospital and described that
period while crying. Credibility, dependability, confirmability, and transferability
“Now, I really understand what a stroke patient’s family are used to evaluate the trustworthiness of a qualitative study
member once said: ‘If the family has a relative with stroke, the (Polit and Beck, 2012). Credibility was established as the authors
family caregiver would become exhausted and die.’ And, it is so have previous knowledge of performing qualitative interviews and
right. (Eyes turn red.) In the hospital, we hired a nursing thematic analysis as well as clinical experience regarding the care
assistant to take care of him. But the mental stress for me was of patients with long-term diseases. However, there is a risk of bias
still too much to bear. I am so tired . . . Every day, I had to stay at because the authors understand the data based on their own
the hospital. Doctors and nurses called me constantly, and there opinions and experiences. To avoid such bias, the results were
was no moment to relax. Paying the hospital bills, signing the discussed with colleagues outside the research group, that is, a
consent forms, blood transfusion, protein transfusion . . . I peer debriefing. To ensure dependability and confirmability, the
cannot recall. It is too painful. Until now, whenever I recall same interviewer (QL) with no previous contact with the
this period, I must stop myself immediately, if not, I would not participants conducted all of the interviews. In addition, frequent
sleep, and am stuck with the pain again, especially at night . . . discussions among the authors throughout the research process
(tears fall but the participant is silent)” (P17, wife). aimed to achieve agreement on the design phase, sampling, data
collection, and especially data analysis, were applied to enhance
3.1.4. Being a prisoner in their own life the dependability and strength of the results. Furthermore,
The family caregivers experienced the situation as being a quotations from the interviews are presented in the results to
prisoner where they watched their own life slipping away from provide readers with an opportunity to review and make their own
them. They lost their freedom and the chance to choose their own judgements about the fairness and accuracy of the performed
lives because of all of the time spent taking care of their relatives. analysis. We have done our best to provide a detailed description of
They were unable to go shopping, meet their friends, work, or even the context, participants, and data collection process to establish
spend time alone. The joy in their life was absent, and they did not transferability.
know if they would ever escape anxiety, sadness, and depression. One limitation of this study is that the stroke survivors were
“I studied at the Elderly University twice a week before, and I sometimes present during the interviews (n = 11), which might have
liked to draw every day when I was free. Now, I have given up prevented the family caregivers from speaking freely and increased
the Elderly University. Where can I go? I cannot go anywhere, I the risk of obtaining embellished information. However, in the
cannot do anything Im interested in. I spend all the time in with interviews when the persons with the stroke were present, a sombre
him. I do not have any time and energy to do anything else.” picture of their experience of caring was described. Those few
(P12, wife) positive descriptions given came from both interviews when the
person who had experienced a stroke was present and not present.
Generally, the older caregivers said that they could not enjoy Hence, these interviews were similar to the others, indicating that
their lives after retirement as a result of being caregivers. The the family caregivers spoke freely even though the stroke survivor
younger caregivers reported that they lost passion and personal was present. Also, from an ethical standpoint, it seemed appropriate
development because of their caregiving responsibilities. to let the participants decide if they wanted the stroke survivors to
6 Q. Lu et al. / International Journal of Nursing Studies 94 (2019) 1–8

attend the interviews as they felt that they were unable to leave their caregivers spend an average of 13 h per day caring for stroke
relatives unsupervised. During these interviews, some of the stroke survivors (Zhang, 2010). In addition to care time, Chinese family
survivors also briefly described their experience of family caregiving. caregivers face financial pressures; for example, medical expenses
These data were excluded from the analysis as they did not represent have been highlighted as a main stressor for families of stroke
the perspective of the family caregivers. survivors in China. Liu et al. (2012) reported that the monthly
rehabilitation expenses for stroke survivors were more than 4000
4. Discussion RMB in Xiamen, Fujian Province, compared to the average personal
monthly income of 3357 RMB.
This study explored the experiences of family caregivers in Concurrently, the one-child policy in China has resulted in a
China who were taking care of persons who had experienced a “4-2-100 family structure, which means that one adult couple care
stroke. Living on the edge was identified as the main theme, which for four old parents and one child. Consequently, family size has
illustrated a sombre picture of the family caregivers’ daily lives that decreased sharply, resulting in every family member having more
affected them physically, psychologically, and socially to a large caregiving responsibilities (Liu, 2006). Additionally, the limited
extent. Concurrently, having total responsibility, being all alone, development of the primary healthcare system and medical
being drained by caregiving, being a prisoner in their own life, and insurance system are further barriers to support and reduce the
being uncertain about the future emerged as sub-themes to describe responsibility of family caregivers in China (Bai et al., 2008). This
the lives of the family caregivers. might explain why the family caregivers in this study experienced
The participants in this study had full daily responsibility for difficulties in obtaining adequate help and support from their
caring for their close relatives who were stroke survivors. They broader family members and society. The problem of balancing
believed they had this responsibility but also felt that this was responsibilities and freedom has also been described by other
expected from those around them and society. Consistent results Chinese family caregivers (Yang, 2010). However, this seems to be a
presented by Qiu et al. (2018) and Mei et al. (2014) indicated that general issue as other international research also portrayed the
the study participants accepted the role of caregiver for the family caregivers’ situation as difficult due to increased workloads and
member with stroke as an expected part of life. Chinese filial piety great responsibilities (McLennon et al., 2014; Bulley et al., 2010;
is an important value in the Chinese cultural context and Woodford et al., 2017). However, this study highlighted this
encourages family members assume the role of caregivers (Cheng conflict within a Chinese context.
and Chan, 2006; Yang, 2009). Spousal caregivers emphasised that In this study, the family caregivers experienced a loss of hope
marital responsibility and a sense of obligation promoted them to and feelings of fear and anxiety when supporting their family
become the main caregivers (Qiu et al., 2018; Xiao et al., 2014). members with stroke, which led to an uncertain future. Zhang and
However, high filial and marital obligations can have a negative Lee (2017) stressed that hope plays an important role for caregivers
influence on family caregivers because they wish to provide the in long-term care and support caregivers to find continuity and
best care possible for their parents or spouses, which can lead to meaning in their lives and overcome uncertainty. Unfortunately,
guilt and self-blame (Lyonette and Yardley, 2003). For spouses, the the caregivers in this study described their lives and futures with
ethical responsibility of conjugal fidelity is infinite and forbids helplessness and hopelessness. Over the past two decades in China,
them from leaving their sick partner. Consequently, it becomes 12 studies on the family caregivers of stroke survivors have been
their mission in life to provide care. This creates a conflict that conducted using qualitative methods (Lv et al., 2016). However,
involves an inability to live in the marriage yet also an inability to only three have focused on the experiences of being a family
leave (Levinas, 1990). Studies by Kitzmüller et al. (2012) and caregiver (Liu and Wang, 2016). Too much responsibility, declining
Bäckström et al. (2010) indicated that within different cultures and health, negative emotional status, and a lack of support were
religious contexts, the spouse caregivers are expected by both experiences reported in these qualitative studies (Wang, 2013;
others and society to assume the responsibility of caring for Zhang and Wang, 2014; Mei et al., 2014). However, none indicated
persons who had experienced a stroke. Family caregivers of that the caregivers experienced uncertainty over their situations
persons living with other disabling neurological diseases have also and futures (Wang, 2013; Zhang and Wang, 2014; Mei et al., 2014).
described this as a balancing act between their own expectations However, fear of an uncertain future has been described in research
and those of others wherein one tries not to be overwhelmed by from Western countries (Woodford et al., 2017; Greenwood et al.,
care work (Lerum et al., 2016; Ray et al., 2012). 2009). For instance, uncertainty seems to be associated with poor
In this study, total responsibility and a lack of support resulted communication from healthcare providers, lack of specific
in the participants being drained by caregiving, feeling all alone, information on stroke, and discharge needs being unmet (Camak,
and becoming prisoners in their own lives. Ohama and Soderberg 2015; Creasy et al., 2013).
(2004) indicated that the caregiver role is frequently characterised Caregiving was not referred to only from a negative perspective.
by reduced individual freedom and an increased sense There were family caregivers who stated that they received good
of responsibility, because caregiving consumes a great amount support and help from their wider family members, friends,
of time and energy. Caregivers can be overwhelmed by a series of healthcare professionals, society, and other caregivers in the same
negative experiences, including unstable emotions, health decline, situation, especially during the acute post-stroke period. However,
guilty feelings, anxiety, social isolation, depression, hopelessness, the main description of the caring experience was sombre. One
and lack of support (Ohama and Soderberg, 2004). However, family explanation for this might be related to what Lippi (2016) found
caregivers in Sweden have expressed that they were also able to when studying the situation of families with persons who had
maintain feelings of how everything used to be before their schizophrenia. Namely, when family caregivers become over-
relatives experienced stroke. This was especially true for those still whelmed and overburdened, it prevents them from feeling a sense
working, which was of vital importance for enduring, replenishing of meaningfulness and experiencing positive aspects in caring. Also,
energy, and feeling relaxed (Kitzmüller et al., 2012; Bäckström a longer time spent on caregiving and inadequate social support have
et al., 2010). In the present study, due to their responsibilities, the been found to be highly correlated to higher levels of burden (Rigby
family caregivers described that having a job became difficult or et al., 2009; Han et al., 2017). However, Zhang and Lee (2017) claimed
even impossible, which led to further economic stress. They did not that the family caregivers of stroke survivors can find positive
want to ask for help from others as this might also affect their meaning if they reached a “turning point,” where the unbearable
employment situation. According to statistics, Chinese family suffering becomes bearable. To reach such a turning point, caregivers
 Q. Lu et al. / International Journal of Nursing Studies 94 (2019) 1–8 7

should have opportunities to express their suffering in order to Creasy, K.R., Lutz, B.J., Young, M.E., Ford, A., Martz, C., 2013. The impact of
gradually gain an understanding of their own situation (Rehnsfeldt interactions with providers on stroke caregivers’ needs. Rehabil. Nurs. 38 (2),
88–98.
and Eriksson, 2004). In most of the interviews in the present study, it Deng, C.Y., Lu, Q., Gong, B.Y., Li, L.Y., Chang, L.X., Fu, L., Zhao, Y., 2017. Stroke and food
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Greenwood, N., Mackenzie, A., Wilson, N., Cloud, G., 2009. Managing uncertainty in
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Levinas, E., 1990. Ethics and Infinity. Symposium Bokförlag, Stockholm.
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caregiving, being a prisoner in their own life, and being for a family member with motor neurone disease in Norway: a qualitative study.
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Funding Lyonette, C., Yardley, L., 2003. Predicting mental health outcomes in female working
carers: a longitudinal analysis. Aging Ment. Health 10 (4), 368–377.
McLennon, S.M., Bakas, T., Jessup, N.M., Habermann, B., Weaver, M.T., 2014. Task
This research was funded by the National Natural Science difficulty and life changes among stroke family caregivers: relationship to
Foundation of China (Grant No.: 71673199) and the Tianjin depressive symptoms. Arch. Phys. Med. Rehabil. 95 (12), 2484–2490.
Municipal Education Commission Scientific Research Project Mei, Y.X., Zhang, Z.X., Zhang, Y., Zhang, X., Yi, J.N., Lin, P.L., Zhang, Y.Q., 2014.
Qualitative research on the experience and feelings of mother caregivers for
(Grant No.: 2018SK007). stroke patients in communities. Chin. Health Serv. Manage. 31 (5), 389–391.
Moos, R., Schaefer, J., 1993. Coping resources and processes: current concepts and
Conflicts of interest measures. Handbook of Stress: Theoretical and Clinical Aspects, 2. , pp. 234–257.
Ohama, M., Soderberg, S., 2004. The experience of close relatives living with a
person with serious chronic illness. Qual. Health Res. 14 (3), 396–410.
No conflicts of interest exist. Pang, D., Na, L., Lu, Q., Yang, P., 2005. A survey of primary family caregiver burden for
community stroke patients. Chin. J. Nurs. 40, 285–287.
Parag, V., Hackett, M.L., Yapa, C.M., Kerse, N., McNaughton, H., Feigin, V.L.,
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who shared their experiences and to the community health-
for Nursing Practice. Wolter Kluwer Health/Lippincott Williams & Wilkins,
care professionals who assisted with the selection of the Philadelphia.
participants. Qiu, Y.R., Li, S.J., 2009. Stroke: coping strategies and depression among Chinese
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