FAMILY EXPERIENCE IN CARING FOR STROKE PATIENTS: AN

INTEGRATIVE REVIEW

Normalia Andi Masyitha Irwan

https://orcid.org/0009-0009-5234-5098 https://orcid.org/0000-0002-4715-7668
Hasanuddin University, Hasanuddin University
Makassar, Indonesia. Makassar, Indonesia
Normalia388@gmail.com citha_ners@med.unhas.ac.id

Abstract
Objective: The purpose of this integrative review is to identify scientific
literature related to family knowledge, roles and support. This information
can support nurses in preparing patients for discharge as well as this
information is useful for families who have family members with stroke.
Design and Methods: The study was conducted by means of an integrative
review. Journal searches were conducted using PubMed, ProQuest, Scopus,
Cumula- tive Index to Nursing and Allied Health Literature (CINAHL),
Ebsco and Garuda for publications between 2015 and 2024, with full text in
English. The Whittemore and Knafl framework guided the review, and for
quality control, we used the Clinical Appraisal Prospective Study (CAPS)
instrument.
Results: Nine qualitative articles were thoroughly examined and carefully
synthesized to reach a conclusion of research on family experiences in
caring for stroke patients by focusing on knowledge, support, and family
roles.
Conclusion: The role of the family is crucial in caring for family members
of post-stroke patients at home. However, the review mentioned various
limitations and challenges in caring for stroke patients due to lack of
knowledge, skills, and heavy economic psychosocial burden. For this
reason, families need various forms of information support and
interventions from health workers in order to carry out their responsibilities
optimally.
Keywords: experience, family caregiver, family support, stroke.
Introduction
Stroke is the second leading non-communicable disease that causes
death (WHO, 2019). The incidence of stroke in the general population is
around 2-2.5 cases per 1000 population. Every year, more than 62% of strokes
occur at the age of 49 -70 years and 34% of sufferers experience death
(World Stroke Organization, 2022). Furthermore data at the regional level,
North Africa, the Middle East, and Southeast Asia, show the greatest increase
in ischemic stroke incidence by age, mortality, and the highest morbidity
rate (Ding et al., 2022). Stroke therefore requires very special attention.
Stroke is a disease that affects the central nervous system due to
disruption of blood flow to the brain. Damage to some brain cells is caused
by a lack of oxygen supply and nutrients needed for their activity. Other
brain cells are damaged by sudden bleeding around or within the brain area
(National Institute of Neurological Disorders and Stroke, 2023). Some brain
cells die quickly, while others are damaged or weakened over a period of
several hours (National Institute of Neurological Disorders and Stroke,
2023). This results in paralysis and permanent limb damage.
Stroke can result in paralysis of the limbs which has a negative
impact on the patient's life and requires long-term care, not only in the
hospital but also at home by the family. Physical and cognitive limitations
due to stroke make patients still need long-term care at home, especially in
the first 3 months after a stroke (Obaid et al., 2020). A longitudinal study
found that most stroke survivors still experience impaired physical activity
after 3 years after the first stroke (Viktorisson et al., 2021). Then stroke
patients will return home even though they have not reached the expected level
of function and the impact of limitations experienced after they go home
(Lutz et al., 2011). Therefore, the role of the family in caring for family
members who suffer from stroke is needed.
Families are responsible for meeting the physical and psychosocial
needs of stroke patients, such as assisting with daily activities, motivating
exercise, and providing emotional support (Lutz & Young, 2010). With care
by families at home, it is expected to accelerate recovery, prevent
complications, reduce recurrence, and improve the quality of life of stroke
patients. So it is necessary for the role of nurses to support and guide
families who care for stroke patients at home. Nurses play a role in
providing health education and care skills training to family members who
become caregivers (Becqué et al., 2021). Support and guidance from nurses can
reduce the burden and improve the family's ability to care for stroke patients
(Becqué et al., 2021). Thus, the family's experience in caring for stroke
patients becomes more positive.
Meta analysis review research on family adaptation by (Hesamzadeh
et al., 2015) in his research found that family members of stroke survivors
respond cognitively and practically and try to maintain a balance between
caring for stroke survivors and their daily lives. Then from this Literature
review the family explains the role of caregivers including the quality of
marital relationships, personal characteristics of family caregivers, the needs
and reactions of sick people, and the family environment of caregivers to
ensure maximum function of the sick person and minimize the negative
impact of being a caregiver (Domaradzki et al., 2015). Meta-analysis review
studies evaluated the effectiveness in a variety of functional and
psychosocial health outcomes for stroke survivors and their family
caregivers (Cheong et al., 2021). However, none of these review studies
discussed knowledge, family roles and family support in caring for family
members who suffer from stroke.

Destination
The purpose of this integrative review is to identify scientific literature
related to stress and coping mechanisms. The purpose of this integrative review
is to identify scientific literature related to family knowledge, roles and
support. This information can support nurses in the preparation of patients
for discharge as well as this information is useful for families who have
family members with stroke.
Methods
This study is a synthesis review of the literature using a systematic
method that follows a five-stage approach, namely: establishing inclusion
and exclusion criteria to ensure the relevance and quality of included
studies, conducting a comprehensive literature search strategy using
appropriate keywords and databases, selecting studies that met the criteria
using the PRISMA (Preferred Reporting Items for Systematic Reviews and
Meta-Analyses) flow chart to illustrate the selection process, evaluating the
methodological quality of each included article using a valid quality
assessment instrument, and extracting relevant data from the selected studies,
including the quality assessment, for synthesis and analysis.

Eligibility Criteria
Inclusion criteria were set as follows: 1) Published in English or
Bahasa Indonesia, 2) Original research, 3) Published in the last ten years
(between 2013 to 2023), 4) The research focused on family experiences in
caring for stroke patients consisting of knowledge, family roles, and family
support, 5) The research subjects were adults aged >18 years. Exclusion
criteria were: 1) Review studies, 2) Studies related to the development of
assessment tools, and 3) Unpublished studies.

Search Strategy
The integrative review method, updated by Whittemore & Knafl
(Dunwoody et al., 2008) from Cooper (Cooper, 1998) was chosen to
improve the accuracy of this integrative review. Integrative reviews allow
various study designs to be brought together, thus providing a
comprehensive picture of a phenomenon (Dunwoody et al., 2008). Nine
This integrative review followed the guidelines for improving accuracy in
article searches. A literature search was conducted in six online databases in
December 2023. For six databases, namely PubMed, ProQuest, Scopus,
Cumula- tive Index to Nursing and Allied Health Literature (CINAHL),
Ebsco and Garuda, the keywords used were "experience", "Family caregiver
OR Family support" Cerebrovascular accident OR Stroke". Garuda is a
database recommended by the Ministry of Education, Culture, Research and
Technology with keywords used are 'Stroke', 'family experience', 'support',
'role', and 'knowledge'.

Prism Flow Chart Selection Study

The initial search conducted by both authors resulted in 1,353 articles. Titles
and abstracts were assessed and reviewed by both authors based on
inclusion criteria, with abstracts focusing on family experiences of caring
for stroke patients. A total of 45 articles were then removed, leaving 1304
articles for further screening. Each author was assigned to review the
articles and enter them in the extraction table using the mendeley
application. From the analysis of the results, articles whose titles did not
mention family experiences in caring for stroke patients, but mentioned related
knowledge, support, and family roles in caring for stroke patients were
acceptable. For duplicate articles, only one was retrieved and the authors
only reviewed full-text articles. Finally, 9 articles met the inclusion criteria
according to the sampling flow of the selected articles (see Figure 1).

Article Quality Evaluation

Theory from Whittemore & Knafl (Dunwoody et al., 2008) from
Cooper (Cooper, 1998), was chosen to increase the accurac of the
integrative review. Integrative review allow various study designs to be
brought together, thus providing a comprehensive picture of a phenomenon
(Dunwoody et al., 2008). The reviewers jointly assessed the methodological
quality of the 9 selected articles using a critical appraisal tool (Clinical
Appraisal Prospective Study [CAPS]) designed by (Bowling, 2014).

Data Extraction
The nine selected studies were then critically appraised for quality
using an instrument created by (Bowling, 2014). The ratings were entered
into a table for evaluation and interpretation on a scale of 'Yes', 'Not
reported', and 'Poor'. The results of this evaluation were used to assess the
quality of the selected articles (Bowling, 2014). This quality evaluation
approach was chosen due to its relevance in assessing both quantitative and
qualitative studies. Based on the evaluation, nine studies were deemed to be of
high quality. Finally, it was decided that the selected articles were of
sufficient quality to be included in the review (Tables 1 and 2).

Results
Nine qualitative articles were thoroughly examined and carefully
synthesized to reach conclusions from research on family experiences of
caring for stroke patients with a focus on family knowledge, support and
roles. The studies were conducted across the world: Indonesia (n=5)
(Agustiani et al., 2023; Audia et al., 2017; Jiu et al., 2023; Kadarwati et al.,
2019; Susanti et al., 2022), China (n=1) (Mei et al., 2020), Thailand (n=1)
(Utaisang et al., 2021), Singapore (n=1) (Tyagi et al., 2021), and Scotland
(n=1) (Visvanathan et al., 2020).
 Pubmed : 760
Scopus : 356
Proquest : 229
Cochrane : 2
Garuda : 2
CINAHL : 4

Identification

Artikel identified
1353
Exclusion
Duplicate article
45
Screening
Screening results
1308
Exclusion
No full text : n = 134
Last 10 years : n = 612
Not relevan topics : n = 502
Full-text article reviewed
Eligibility
n (60)
Exclusion :
Review : n = 6
Inaccessible : n = 15
Not match research
variables : n = 30
Eligible Studies :
n (9)

Included

Inclusion
n (9)

Picture 1. Prism Flowchart

Table 1. Quality Appraisal

Adequate The results

Results
Goals are Study Appropriate Description, are in
Ethics are Limitations Implications Value/level
Author clearly design research sample, and accordance
presented clearly presented discussed
explained explained method exclusion with the study
Retrieved
criteria questions and
literature
(Susanti et al., 9/9
Yes Yes Yes Yes Yes Yes Yes Yes Yes
2022) High
(Agustiani et al., 9/9
2023) Yes Yes Yes Yes Yes Yes Yes Yes Yes High
9/9
Yes Yes Yes Yes Yes Yes Yes Yes Yes High
(Jiu et al., 2023)
(Visvanathan et 9/9
al., 2020) Yes Yes Yes Yes Yes Yes Yes Yes Yes High
(Kadarwati et al., 9/9
Yes Yes Yes Yes Yes Yes Yes Yes Yes
2019) High
(Tyagi et al., 9/9
2021) yes yes yes Yes Yes Yes Yes Yes Yes High
(Audia et al., 9/9
yes yes yes Yes Yes Yes Yes Yes Yes High
2017)
(Utaisang et al., 9/9
2021) yes yes yes Yes Yes Yes Yes Yes Yes High
9/9
yes yes yes Yes Yes Yes Yes Yes Yes
(Mei et al., 2020) High
Table 2. Data Extraction

No Author Country/Year Destination Methods Sample Family knowledge Family role Family support
.
1 (Susanti et al., Indonesia, Exploring family Qualitative with 12 Patient's Family knowledge in pre- - -
2022) 2022 experiences of a family hospital stroke management, its
stroke patients. phenomenologic impact on the timing of bringing
al approach stroke patients to the hospital.
design

2 (Agustiani et Indonesia / Exploring in Qualitative with 5 family Patient needs, medication The family plays a Spiritual,
al., 2023) 2023 depth the family's a members who adherence, non-pharmacological role in the healing psychological,
experience in phenomenologic have treated treatments, signs and symptoms process and meeting and social
caring for non- al approach stroke patients of stroke, and the concept of the daily needs and support.
hemorrhagic design at stroke itself. overall well-being of
stroke patients. Pangkalpinang the patient.
Timah Hospital
3 (Jiu et al., Indonesia Exploring the Qualitative with 14 family - - Emotional
2023) /2023 experience of a members who support, spiritual
family caregivers phenomenologic are caring for support
in caring for post- al approach post-stroke
stroke patients. design patients

4 (Visvanathan Scotland/2020 Exploring what Qualitative 24 family - The family's role in -

et al., 2020) support needs the with semi- members of decision-making for
family has during structured severe stroke the care of family
the decision- interviews patients were members
making process. interviewed for
the study.
5 (Kadarwati et Indonesia Exploring in Qualitative with 9 family Family knowledge in caring for The role of fulfilling Social support,
al., 2019) /2019 depth the a members who stroke patients is limited, and physical, and financial practical and
family's phenomenologic provide care to this study suggests that families needs, as well as psychological
experience of al approach stroke patients need education and training meeting the daily assistance from
caring for post- design at home in the from health professionals to needs of the patient. caregivers.
stroke patients. Jambi city area improve their knowledge and
skills in caring for post-stroke
patients.
6 (Tyagi et al., Singapore/202 Knowing family Qualitative 26 family Caregiver support systems and The role of fulfilling Spiritual support,
2021) 1 support with semi- caregivers of empower, and emphasize the physical needs information
patients importance of tailoring support, and
No Author Country/Year Destination Methods Sample Family knowledge Family role Family support
.
structured suffering from interventions and education to practical
interviews stroke address the specific needs of assistance
different caregiver identities. support
7 (Audia et al., Indonesia Knowing the Qualitative with 6 Banjar family The experience of physical and Emotional
2017) family experience a members and emotional changes in caregivers, support, seeking
phenomenologic the stroke the importance of home care in traditional
al approach patient herself, the transition period after medicine
design as well as other hospitalization, and the social support, and
family members support received by caregivers Spiritual support.
who acted as from the government and family
secondary members.
informants.
8 (Utaisang et Thailand, To understand the Qualitative with 16 families Lack of knowledge and - -
al., 2021) 2021 experiences of a information is important for
stroke family phenomenologic poor treatment outcomes and
caregivers and to al approach care delivery...
improve design
healthcare
readiness for
stroke patients
and their
caregivers.
9 (Mei et al., China /2020 Exploring the Qualitative 31 primary Knowledge of preventing - Family support
2020) benefits felt by with semi- family for stroke recurrence through healthy in stroke patient
family caregivers structured survivors lifestyle practices and acquiring care and social
of stroke interviews knowledge about stroke and support.
survivors in health.
Chinese
communities
Family Knowledge
Of the nine articles analyzed, there were seven that discussed family
knowledge in caring for stroke patients. (Agustiani et al., 2023; Kadarwati
et al., 2019; Mei et al., 2020; Susanti et al., 2022; Tyagi et al., 2021;
Utaisang et al., 2021). Most stated that family knowledge in caring for
stroke patients is still limited and needs to be improved. (Kadarwati et al.,
2019; Susanti et al., 2022; Utaisang et al., 2021; Mei et al., 2020). Some
things that are important for families to understand include understanding
the needs of patients, appropriate treatment, how to prevent complications,
and understanding the concept of stroke itself.

The Role of the Family

Explicitly, there are five articles that mention that the role of
family is very important in caring for stroke patients at home Kadarwati et
al., 2019; Mei et al., 2020; Susanti et al., 2022; Tyagi et al., 2021;
Utaisang et al., 2021; Audia et al., 2017). The family plays a role in
providing care to family members (Agustina & Rokhanawati, 2018; Audia
et al., 2017; Kadarwati et al., 2019; Kadarwati et al., 2019; Mei et al.,
2020; Susanti et al., 2022; Tyagi et al., 2021; Utaisang et al., 2021)). They
help fulfill the daily activity needs of stroke patients (Kadarwati et al.,
2019). Families often experience limited knowledge and skills in caring.
This has an impact on the physical, psychological, social and economic
burden experienced by families.

Family support
Four articles describe family support as indispensable for stroke
patients both during hospitalization and afterward (Agustiani et al., 2023; Jiu
et al., 2023; Tyagi et al., 2021; Kadarwati et al., 2019). The support
provided includes emotional, spiritual, informational, and practical
assistance in meeting daily needs (Kadarwati et al., 2019). So that family
caregivers often experience severe challenges due to limited knowledge,
skills, physical conditions, as well as psychological and socio-economic
pressures (Tyagi et al., 2021).
Result Implications
The literature provides a number of important implications for
efforts to improve the quality of care for stroke patients by families. In
particular, the results of the review indicate the need for increased education
and regular training for family members to have adequate knowledge, skills
and capacity to care. In addition, intensive and continuous psychosocial
assistance by health workers is absolutely necessary to help families
overcome the challenges they face. The development of innovative care
models with a collaborative approach between various stakeholders is also
important to provide holistic support for patients and families. In addition,
more comprehensive quantitative research is needed to map family
problems more precisely, so that interventions are more targeted. The
utilization of digital technologies such as telehealth and online educational
applications also has the potential to strengthen the role of families in
caring for family members of stroke patients. By following up on these
various implications, it is hoped that the overall quality of care for stroke
patients can be further improved.

Discussion
The purpose of this review is to determine the knowledge, role, and support
of families in caring for family members.
I. Family knowledge
The review of articles revealed that families have limited
knowledge and skills in caring for post-stroke patients. Lack of
knowledge and important information can lead to poor treatment
outcomes and care delivery. In addition, there are physical and
emotional changes in caregivers when caring for post-stroke patients.
Home care is very important during the transition period after
hospitalization, and social support from the government and family
members is needed by caregivers. Based on these findings, the theory
lack of family knowledge will lead to failure to care for post-stroke
 patients at home and families will have a negative attitude
(Simandalahi, 2018). Caregiver support and empowerment systems
emphasize the importance of tailoring interventions and education to
meet the specific needs of different caregiver identities. Education and
training from health professionals can improve family knowledge and
skills in caring for post-stroke patients. (Melnikov, 2020).
Therefore, families need to receive education and training from
health professionals in order to provide optimal care to post-stroke
patients. Interventions and education must be tailored to the specific
needs of each family, so it is necessary to develop education and
training programs for families or caregivers of post-stroke patients
involving health professionals. Education and training programs should
be designed according to the specific needs of each family. The
government and related institutions should provide adequate social
support for families, such as counseling services, information, and other
resources. Improved family knowledge and skills in caring for post-
stroke patients can improve the quality of care and prevent recurrence
through healthy lifestyle practices.
II. Family role

The results of the review article stated that the family was
involved in making care decisions, meeting the physical, financial, and
daily needs of patients and did not explain in detail about the family's war
in caring for members suffering from post-stroke. This review also does
not explain specifically about the types of physical needs and types of
care provided to families suffering from stroke which are important
aspects of care Family care theory emphasizes the importance of
including families in the care process and making decisions regarding
the care of family members who suffer from illness (Salamung et al.,
2021). Because a good family role in caring for stroke patients will
improve the patient's better self-concept (Afriyani, 2011). Therefore,
families should be actively involved in making decisions for the care of
sick family members, because they understand the patient's condition and
 needs well. The role of the family in fulfilling the physical needs of the
patient is very important, especially in home care or after the patient is
discharged from the hospital. Financial support from the family is also
needed to pay for the care and treatment of patients, especially for
families with limited economic conditions. So it is necessary to raise
awareness and educate families about their roles and responsibilities in
the care of sick family members. It is necessary to involve families in
the decision-making process of care, treatment of family members and
provide the necessary support and training. The government and related
institutions need to provide access to affordable health services for
families with limited economic conditions. The development of
programs or interventions that focus on empowering families in the care
of sick family members, especially in meeting physical needs and home
care, is also very important.
III. Family support

The purpose of this review is family support in caring for family

members. From the results of the review of articles mentioned that
families provide emotional, spiritual support, and practical and
psychological assistance to patients but the articles do not fully explain
the spiritual, psychological, and social support provided by families
to post-stroke patients. Families also play a role in seeking traditional
or spiritual treatment support for patients but the articles reviewed did
not explain in detail about the types of traditional and spiritual treatment
that families provide to post-stroke patients. This is supported by family
care theory which emphasizes the importance of family involvement in
providing holistic support, including physical, emotional, social, and
spiritual aspects (Fry, 2010).
In addition, family support is very important to help the process
of life achievement and can increase patient motivation during the
treatment process (Unak, 2021). So that spiritual, emotional, and social
support from the family is very important to help post-stroke patients in
the healing process and adaptation to new conditions. Families must be
 given the knowledge and skills to provide appropriate support according
to the patient's needs. Support from the wider social environment, such
as the community and related institutions, is also needed to assist
families in providing optimal care. There is a need to develop education
and training programs for families to improve their ability to provide
spiritual, psychological and social support to post-stroke patients.
Health professionals should involve families in the care process and
provide guidance on the forms of support that patients need. The
government and relevant agencies need to provide social and
psychological support services that can be accessed by families and
post-stroke patients. The development of collaboration between health
professionals, families, and communities in providing holistic support to
post-stroke patients is also important.

Limitations of the review

The current literature on family knowledge, support and role in

caring for stroke patients has some important limitations. Few explore
solutions or interventions to improve family knowledge and support
capacity. In-depth understanding of the specific roles of different family
members is limited.
In addition, quantitative research to comprehensively map the patterns and
prevalence of problems faced by families is still very rare. The utilization of
modern technology or innovative collaborative care models that can
strengthen the role of families is also not optimal. By understanding the
limitations of the current literature, future research is expected to
significantly contribute to the knowledge, support and role of families in
post-stroke care and produce recommendations that can increase the capacity
of family support for stroke patients.

Recommendation
Nursing Education
Based on the results of the integrative review of family experience in
caring for stroke patients, optimizing nursing education through
curriculum reconstruction that integrates stroke patient care management
at home, the concept of family psychological empowerment and support,
development of case simulation training programs and practical skills,
promotion of interprofessional collaborative learning, preparation of
family education modules, increasing student capacity in effective
education, research and development of evidence-based interventions, and
utilization of technology in the process of education and communication
with families, is seen as an essential step to prepare prospective nurses
who are competent in facilitating optimal care of stroke patients by
families.
Nursing Practice

Based on the integrative review of family experiences in caring for stroke

patients, nursing practice recommendations include the development of a
family-centered care approach, implementation of ongoing family education
and training programs, multidisciplinary integrated support models,
improved discharge planning with family involvement, formation of
family support groups, continuous monitoring and evaluation systems,
collaboration in the development of programs and policies supporting the
care of stroke patients at home, and further research for interventions to
improve family skills and well-being. These comprehensive measures aim
to improve the quality of stroke patient care at home, optimize family
support and well-being, and promote evidence- based nursing practice in
family-centered management of stroke patients.

Conclusion
The role of the family is crucial in caring for family members of
post-stroke patients at home. However, the review mentioned various
limitations and challenges in caring for stroke patients due to lack of
knowledge, skills, and heavy economic psychosocial burden. For this
reason, families need various forms of information support and
interventions from health workers in order to carry out their
responsibilities optimally.
Through collaboration between health professionals, families,
patients and other stakeholders, it is hoped that the best quality of care and
support for post-stroke patients at home can be achieved. This will have a
positive impact on the quality of life and development of the patient's
condition. By understanding the family perspective through existing research,
appropriate and meaningful intervention programs can be developed to
achieve optimal family support and holistic patient well-being.

Author Biography

 Normalia: Department of Medical-Surgical Nursing, Faculty of

Nursing, Hasanuddin University, Makassar, Indonesia.
 Andi Masyitha Irwan (correspondence author): Department of
Gerontic Nursing, Hasanuddin University, Makassar, Indonesia.
citha_ners@med.unhas.ac.id.

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