TABLE OF CONTENTS

PREFACE PAGE
1.Introduction 1-2
1.1. Glossary of Items 3
1.2. Problem Statement 4-5
1.3. Research Question
1.3.1. Central Question 6
1.3.2. Sub-question script 6
1.4. Purpose of Study 6
1.5. Research Objectives
1.5.1. General Objective 6
1.5.2. Subjective Objective 7
1.6. Benefit of the study 7

2.Literature review
2.1. Stroke survivor challenges 8
2.2. Caregivers burden
2.2.1. Family caregivers 8- 10
2.2.2. Caregivers health 10
2.2.3. Cost of Life 11
2.3. Coping 12

3. Methodology
3.1. Study design 13
3.2. Study location 13
3.3. Duration of Study 13
3.4. Method Inquiry 13
3.5. Methodological approach 14
3.6. Research participant
3.6.1. Inclusion criteria 14
3.6.2. Exclusion criteria 15

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 3.7. Instrument 15
3.8. Data Collection
3.8.1. Data collection procedures 15 - 16
3.9. Ethical Consideration 16
3.10. Data analysis 16
3.11.Strategies for validating finding 17

References 18 - 21

Appendixes 22 - 28

List Of Appendixes.

Appendix 1 : Permission Letter 22

Appendix 2 : Semi-structure interview guide 23
Appendix 3 : Respondent Information Sheet 24 - 25
Appendix 4 : Consent participant Sheet 26
Appendix 5 : Budget 27
Appendix 6 : Gantt Chart 28

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1. INTRODUCTION

Stroke is a serious public health problem with high recurrence rates, disability,

morbidity and mortality (Wang 2008a). Annually, 15 million people worldwide

suffer from stroke , 5 million die and another 5 million experience residual

disabilities ( World Health Organization 2009 ). Survivor typically return home

after hospitalization, where they rely on emotional and physical support fro

family members(e.g spouses, adult children and siblings), close friends and

sitters to aid in their recovery (Backstrom & Sudin 2010 )

Caregiver is anyone who provide any type of physical and / or emotional care

for an ill or disable loved one at home. Loved ones in need of care , could be

suffering from physical or mental illness, disability, substance misuse , or other

conditions.There are different types of family caregivers such as parents, adult

children, spouses, family members, neighbours and friends. (Vincent et al,

2009).The majority of the caregiver are women but there also a male in recent

years ( King R.B. et al, 2001).

Regardless of how they became a caregiver, they are about to take on a new

role for which they may not prepared. It is normal for them to feel nervous or

overwhelmed about what is expected of them. They may experience a number

of mixed emotions including anxiety, anger and sadness. At the same time ,

they will probably feel desire for their loved one the best way they can.

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Understanding the experiences of stroke caregivers’burden after discharge

from hospitalization that not only acknowledges the details and complexities of

caring for a loved one, but also recognizes the subjectivity and humanness of

caregivers’ experiences and perspectives in caregiving of stroke patient. As

Upton and Reed ( 2006 ) suggest, a past preoccupation with typically narrow

research approaches has delayed the essential development of an accurate

understanding of the lived caregiving experience.

The ability of a healthcare team to provide accurate support to family

members is often based on their understanding of caregiving experiences is

therefore highly problematic, and warrants a study with a methodology

specifically aimed at understanding such lived experiences. Moreover , the

research found that health professional need to see and listen to the close

relatives’ experiences of transition in order to provide appropriate support

adjusted to their varying needs during a time of renewal ( Backstrom B &

Sudin K. 2010 ).

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1.1. GLOSSARY OF TERMS.

Stroke : Strokes are usually classified by what mechanism caused the loss of

the blood supply, either ischemic or hemorrhagic. A stroke may also be

described by what part of the brain was affected (for example, a right

temporal stroke) and what part of the body stopped working.

Stroke caregiver : The person primarily responsible for providing and / or

coordinating stroke survivor care in community, without nursing skill or

financial compensation. The caregiver is informal caregiver may be a friend or

relative of the patient.

Stroke survivor: A person who has endured a stroke ( irrespective of the type

or location in brain ), who may suffer residual physical impairment, cognitive

impairments, behavior changes , and / or difficulty performing activities of daily

living.

Caregiving experiences : The experiences of caregiver while provide a care

for stroke patient.

Coping : expending conscious effort to solve personal and interpersonal

problems, and seeking to master, minimize or tolerate stress or conflict.

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1.2. PROBLEM STATEMENT

Caring for a stroke survivor is highly stressful and can negatively affect the

caregivers’ physical and psychological well-being ( King et al.2001). Stroke

caregivers tend to report more somatic symptoms, depressive symptoms,

sleep disorder and social isolation and enjoy less life than non-caregivers (Sit

et al. 2004 )

Family caregivers are accountable in providing for the first-ever stroke patient

needs, including maintaining functional improvement gained in rehabilitation

and the long term well-being of the stroke patients. Out of 10 to 15% of 25.7

millions of Malaysians are caregivers ( Hairi N, 2010, Hussain RHT, 2007 ). It

is common in Malaysia practice that family members provide most of the

assistance in activities daily living (ADL ) of stroke patients during at home.

These caregiving responsibilities are physically and emotionally challenging,

especially for a person who has not had any prior training in carrying these

roles and responsibilities ( Nydevik I , 2003 ).

Caring for the disable stroke patients may have severe impact on the quality

of life of caregivers and can be a burden for caregiver. The drastic changes of

lifestyle due to responsibilities for stroke patients can make the caregivers

stress.Physical , psychological , emotional and cognitive changes associated

with stroke impact the caregiver as well as the stroke patient. This changes

affect the health and lifestyle of spousal caregivers. The caregiving has

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detrimental effects on the lives of caregivers, and that they are in significant

need of social support to help them deal with caregiving task and

responsibilities.

At a time when hospital are releasing stroke patient, often the caregiver will

find themselves having to perform new and unfamiliar tasks. These may

include giving medicines, assisting with meals, and performing medical and

nursing procedures such as personal care, emotional support, medical care,

household management, supervision, translation services in medical setting.

All this are new task and environment for them to coping with level of distress

in family carers of individual with disability can be high ( Gaugler J.E, 2010)

and this has been associated with increased morbidity and mortality.

Furthermore, the potentially harmful effect of life distress as experienced by

caregivers of functionally dependent person is exacerbated by the long-term

nature of care recipient need and behavioral symptoms( Gaugler J.E, 2010 ).

Consequently , families are often poorly prepared and lack information and

kills they need for a successful recovery ( Bakar S.H, 2013 ). Since caregiver

involvement is a vital person in taking care of stroke survivor ., this study will

be able to determine, understand, describe and discover the caregivers’

burden and coping.

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1.3. RESEARCH QUESTION

1.3.1. Central Question :

“What does it mean to caregivers’ burden?

1.3.2. Sub -questions Script :

“How would the stroke caregivers’ describe their burdens? “

“ What type of stroke patient does caregivers’ engage in as burden ?”

“ What happened to stroke caregivers’ life while provide a caregiving for stroke

patients”

“ How the stroke caregivers’ coping with the changes in their routine?”

1.4. PURPOSE OF STUDY

Caring for stroke patients leads to caregiver strain.The purpose of this

narrative study will be to understand, describe and discover the burdens of

caregiver for stroke patient at home and to assess the relationship between

patient characteristics and caregivers’ burden.

1.5. RESEARCH OBJECTIVES

1.5.1. General objective.

The current study will examine the perspective of caregivers’ burden of stroke

patient. In this way we will understand their burdens in caregiving to stroke

patients.

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1.5.2. Specific objectives.

1. To understand coping strategies of caregiver

2. To discover the caregiver burden

3. To describe the detail of caregivers burden in caregiving of the clients.

1.6. BENEFIT OF THE STUDY

1. It can provide information how long the caregivers experience involve /

handling the stroke patients.

2. Information on factor of caregivers’ burden of stroke patients.

3. To determine the coping mechanism that has been used by stroke

caregivers’.

4. Finding from this study can be use by policy-makers, health educator,

counselor and services provider as a guide for more effective approach.

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2.LITERATURE REVIEW

2.1. Stroke survivor challenges.

Stroke is the third largest cause of death in Malaysia after heart disease and

cancer . It is considered the main cause of severe disability, and each year an

estimated 40,000 Malaysians had a stroke. Anyone can suffer a stroke,

including children. However, most cases happen to adults.People with high

blood pressure are 6 times more likely to get a stroke ( National Stroke

Malaysia Association, NASAM 2015). With higher life expectancies and an

aging papulation, the incidence of stroke is expected to double in the next

decade, and by the year 2025, stroke will be the greatest worldwide cause of

disability ( Smith & Smith , 2000 ) . Many people who suffer a stroke face

enduring medical challenges, including functional impairments ( resulting in

difficulty performing even the simplest actvities of daily living), cognitive

impairments ( making it difficult to hold simple conversation ), and are at

significant risk of subsequent medical complication such as pneumonia and

subsequent strokes ( Kind et al.,2007).Early recovery is very important. Each

stroke victims must receive rehabilitation treatment as soon as possible.

2.2. Caregivers burden.

2.2.1. Family caregivers

Many people feel quite sure how they will meet the challenges of home care

for stroke victims.( National stroke Malaysia Association , NASAM 2015 ).The

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transition from hospital to home is a complicated and distressing time not only

for the stroke survivor, but also for the caregiver. Up to 80% of stroke survivors

who are discharged from an inpatient facility will return home to the care of

family caregiver ( Pringle et al.,2008). At this time , responsibility for the

patient’s care falls on the caregiver. During the period leading up to , the

caregiver will face immense uncertainties and new challenges. The caregiver

must learn to cope with their loved ones’ stroke, their concurrent grief and

uncertain future.Thus, the sudden need to care for a stroke survivor can be

emotionally difficult and physically challenging ( Godwin et al 2013).

Caregivers are often unsure of their new role and are unfamiliar with the

disease, it progression and the kinds of support that available to them.

Bhattacharjee et al ( 2015 ) in the qualitative descriptive approach found that

adult daughters providing post-stroke care to a parent was overloaded with

multiple role demand and responsibilities. Two key themes suggest that role

overload resulting from parent care affects daughters : 1) valued relationships

e.g challenge develop in their relationship with children and partner and 2)

ability to participate in valued activities e.g reduced involvement in leisure

activities and restricted employment. Future support effort should help

daughter manage caregiving role in light of other responsibilities. This can

mitigate overload related strain in valued relationships and decreased

participation in valued activities, thereby contributing to better health and well-

being for daughter caregivers.

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Stroke patients often dependent on their family. Family is the closer caregivers

who always take part in stroke patient caregiving. Being a close relative bring

with it a large of consequences, with the life situation changing over time.The

analysis revealed that being close to someone who had suffered a stroke 6

months after discharge meant; a struggling for control relative began t

perceive the changed reality ( Backstrom B, Sudin K, 2010 ). Loss of

independence and uncertainty, struggling with new phase of life, and striking a

balance were identified as a main categories of caregivers’ burden.

Nevertheless , family adaptation is a dynamic process and present study

finding provide rich information on roper assessment and intervention to the

practitioners working with families of stoke survivors. ( Aziz et, al. 2014 ).

2.2.2. Caregiver health.

The researcher has found the older women of caregivers are more burden

than men it because women taking more hour of care and less use of

informal support than man. When an equal number of men and women are

assessed, 58% of women are in the group with above-average levels of

burden and depression as compared with 42% of men. In addition, 55% of

women help with an above-average number of caregiving tasks, as compared

with 45% of men( Pinquart and Sorensen , 2006)

Meanwhile according to Pinquart and Sorensen ,(2007 ), poor health of

caregivers due to the effect of physical exertion that procedures muscle strain,

skeletal injury, aggravation of chronic illness such as arthritis, or other courses

of physical discomfort also can be stroke caregivers’ burden. According the

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narrative review , between 18% and 35% of informal caregivers perceive their

health as fair or poor.

2.2.3. Cost of life.

Economical issue also a burden for stroke caregivers. In he presented study

was found that stroke patients and their family members spent nearly 40% of

their total income to nance outpatient stroke rehabilitation treatment. The

percentage differs greatly from usual Malaysia household expenditure on

medical good and services( i.e. 2.6%-3.5% of total income per month ). The

cost of out patients care we found to be significantly influenced by the severity

of the stroke. The cost attendant care was the main cost incurred to patients

during the first three months after hospital discharge, while the cost of

traveling to the hospital was the cost incurred when attending outpatient

stroke rehabilitation therapy. In other word, stroke- related cost impose an

obvious economic burden on those affected ( Seyed Majid et al. 2015 )

According to Nishio D et, al. (2015 ) in his study was found , factors that

influenced the burden on caregivers were frequency of using nursing-care

services, less numbers of caregivers, sex of patients and frequency of

voluntary training. In stroke patients with a high dependence in nursing- care

services, the burden on caregivers was large.

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2.3. Coping

Caring for a stroke survivor with functional dependence can led to stress ( Yu.

2013 ). Quality of life and coping strategies is an individual perceptions of their

position in life and in relation to their goals, expectations, standards and

concerns’ ( US Department of Health & Human Services 2000 ). According to

Yunhong Yu (2013), a person’s perception of mental and physical health is

related to the way he or she evaluates and copes with the stress living.

Moreover ,positive coping strategies ( e.g. seeking support and confronting )

have been shown to decrease distress and depression while improving vitality

and mental well-being ( Visser-Meily rt al.2009 ).

Mean while, prayer is a common coping strategies ( Amy W & Usha ,. 2011 ).

Inividuals using positive rigious coping techniques, such as prayer, tend to

have both improved perceived mental and physical health, as weel as

improved objectively measured health outcomes ( Paragament et al. 2004,

Wachholtz & Pargament, 2008 )

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3. METHODOLOGY

3.1. Study design.

Qualitative study.

3.2. Study location.

The study will take place in South Johor (Johor Bharu, Kempas, Pontian and
Gelang Patah)

3.3. Duration of study

September 2016 – September 2017.

3.4. Method Inquiry

Qualitative research aims to describe and interpret social rules, culture and

human experiences. Qualitative research is particularly well suited to study

the human experience of health, a central concern of nursing science

( Marsella A. 2008 ).Qualitative research is well suited to exploratory

investigations of problems about which little is known ( Sinuff et al. 2007 ).

Because , qualitative methods focus on the whole of human experience and

the meaning ascribed by the individual experience. These methods permit

broader understanding and deeper insight into complex human behaviours

that, what might be obtained from surveys and other linear measures of

perceptions risk of oversimplifying, qualitative research has several theories

and methodologies, each with a different aim and different assumption (Finlay,

2000). Moreover the main objective of the present study is to understand,

13
describe and discover the burden of caregiver of stroke patient at home.

3.5. Methodological approach.

Qualitative content analysis,pprominent themes and patterns among the

themes were identified from participant interview data collected over 6 month

post discharge following stroke due to intracranial bleeding because of

hypertension, diabetes mellitus and tumor . The survivors are having

hemiplegic or paraplegia.

This study is to understand, describe and discover the caregivers’ burden and

coping strategies. So that the qualitative research is a suitable approach to

focus on exploring the life of an individual with primary interview and

documents as tool for data collection.

3.6. Research participants

3.6.1 Selection of participants

The respondents will be 20 caregivers of a stroke patient. A patient with

stroke caused by intracranial bleeding whom were over six month post

discharge from hospital.In qualitative studies sample size depends on purpose

of the study , practical factors, validity, meaningfulness and analytical

qualities of the researchers ( Handon et al., 2001 ). I defined caregivers as

the person primarily responsible for providing and / or coordinating stroke

patient care at home. In this way , the caregiver may be relative or friend. If

the appeared to be more than one caregiver, I invite the family member who

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co-resided with the stroke patient and who, in discussion with the family , was

likely to be primarily responsible for care in the home.

3.6.2. Inclusion Criteria

i. Informal caregiver of stroke patient

ii. Haemorrhagic stroke patient

iii. Non formal care of stroke patient / stay at home.

3.6.3. Exclusion Criteria

i. Formal caregiver of stroke patient

ii. Trauma Bleeding Intracranial patient

iii. Formal rehabilitation centre

3.7. Instrument.

Will use semi-structure interview guide from Green TL

(Waiting approval permission from Green TL via email. Appendix 1 )

3.8. Data collection.

3.8.1. Data collection procedures.

The in-depth interviews will use a semi-structured interview guide (Appendix

2) to focus discussion on caregivers’ burden. Caregivers were asked to reflect

back on their feeling and preparation received prior first time facing the life as

a stroke caregivers’. The interview guide was designed to allow caregivers to

discuss their experiences openly, without being “led” by the investigator. To

15
accomplish this, the interview guide was created with a minimal number of

broad questions, and a series of open-ended probs, which are used to clarify

the meaning of responses and encourage in-depth discussions, while still

remaining focused the goals of the study. Family caregivers, who tended to

focus on the stroke patients’ needs, were encouraged to think about their own

needs by the interviewer. Interviews were one on one ( one caregiver and one

researcher ), and took place in person . Throughout the interviews, the

researcher also attempted to maintain a level of reduction, refraining from

outside interpretations by bracketing preconceived notions. As Upton and

Reed (2006) qualitative reduction does not involve an absence of

presumptions, but a consciousness of one’s own assumptions. This open

awareness was practiced not only throughout the interview process, but into

the data analysis phase as well. Interviews will record.

3.9. Ethical Consideration.

The study will be conduct after obtain approval from The Medical Research

Ethical Committee of Faculty of Medicine and Health Science, University Putra

Malaysia. Participant will be inform about this study through information sheet

(Appendix 3) and written consent will be obtain from the participant before the

interview (Appendix 4

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Study design / data interpretation.

Design and
development of Qualitative Design Semi Structured
survey Interview

20 respondents from
Stroke Caregivers’
Sample selection

Initial Analysis -
Data collection Qualitative

Analysis Thematic
Analysis

Discussion and
Results development of
model

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3.11.Data analysis .

Using conventional content analysis, the analysis process began upon

completion of each interview. Transcribed qualitative interview were first

review for accuracy. Transcripts were read in their entirety several times, in an

attempt to gain understanding of the text as a whole. All textual data were

read individually and repeatedly to get a sense of the overall content. Once

understood , transcript were read once more, slowly, to identify components or

differences by frequency, but by intuitive judgment made by the researcher.

Next , the text were coding into meaning units. Meaning units were then

clustered in large categories. This process also eliminated redundancies, and

clarified the meaning of each unit in relation to each other. The tentative

categories will discuss by two researches and revised, based on reflection and

agreement about themes running through the text (Graneheim and

Lundman,2004 ). N6 qualitative software will then be use to organize the

transcripts into the meaning units and categories. From this level of analysis

the clusters of meaning units will organize into the emerging themes. As a last

step, the original text was re-read to ensure that the themes reflected the

original data, and that no meaning was overlooked.

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3.12.Strategies for validating finding.

Validating finding is a part of rigour for qualitative research. Internal validity ,

triangulation of data sources, methods, data type, investigators, and using

open-ended question which is used in the previous study ( Green T.L ,2009 )

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