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SATISFACTION TOWARDS DOMICILIARY CARE SERVICES AND THE UNMET NEEDS AMONG STROKE PATIENTS IN KOTA BHARU DISTRICT

DR NURUL AIN BINTI MOHD EMERAN

Dissertation Submitted in

Partial Fulfilment of the Requirements for the Degree of Doctor of Public Health

(Epidemiology)

UNIVERSITI SAINS MALAYSIA

April 2018

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ACKNOWLEDGEMENTS

ِِمْيِحَّرلا ِِن ٰم ْحَّرلا ِِالل ِِمْسِب

Praise be to Allah S.W.T the most compassionate and most merciful, whose blessing have helped me through the study until the submission of this report.

I would like to express my deepest gratitude and thank to the following individuals who had helped me in the preparation and during the completion of this dissertation. I would like to express my utmost gratitude to my main supervisor, Associate Professor Dr Nor Azwany binti Yaacob from Department of Community Medicine and Dr Muhammad Hafiz bin Hanafi from Department of Neuroscience for their support, willingness in providing constructive suggestions, proofreading, and the countless efforts generously channelled towards this research.

My sincere appreciation is extended to my co-researchers Dr Mohd Harith bin Abdul Aziz from Department of Rehabilitation Medicine, Hospital Raja Perempuan Zainab II, and Dr Noor Aman bin A. Hamid for their treasured input. My appreciation is also directed to all staffs of Kota Bharu, Pasir Mas, and Tumpat District Health Office for their cooperation and to all respondents or staff who directly or indirectly participated in this study. Special thanks to Ministry of Health Malaysia for the opportunity for a full course of funded study leave and permission to conduct this study at their facilities.

Last but not least, all thanks to my beloved parents Hj. Mohd Emran bin Abd Salam and Hjh. Zaiton binti Sha’ari, all lecturers, and my colleagues in Department of Community Medicine for their support and encouragement throughout this study.

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TABLE OF CONTENTS

ACKNOWLEDGEMENTS ... ii

TABLE OF CONTENTS ………...……….iii

LIST OF TABLES ... vii

LIST OF FIGURES ... x

LIST OF APPENDICES ... xi

LIST OF ABBREVIATIONS ... xii

ABSTRAK…… ... xiii

ABSTRACT…. ... ………..xvi

CHAPTER ONE ... 18

INTRODUCTION ... 18

1.1 Introduction ... 18

1.2 Problem statement ... 21

1.3 Study rationale ... 22

1.4 Research question(s) ... 22

1.5 Objective ... 23

1.5.1 General objective ... 23

1.5.2 Specific objectives ... 23

1.6 Research hypothesis ... 23

CHAPTER TWO ... 24

LITERATURE REVIEW ... 24

2.1 Introduction to stroke ... 24

2.2 Stroke’s burden ... 25

2.3 Stroke rehabilitation ... 27

2.4 Dependency level ... 29

2.5 Domiciliary care services ... 33

2.6 Predictors in service satisfaction ... 39

2.7 Unmet needs for care ... 42

2.8 Conceptual framework ... 47

CHAPTER THREE ... 49

METHODOLOGY ... 49

3.1 Research design ... 49

3.2 Study area ... 49

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3.3 Operational definition ... 49

3.3.1 Stroke patient ... 49

3.3.2 Caregiver ... 50

3.3.3 Adult caregiver ... 50

3.3.4 Capable caregiver ... 50

3.3.5 Shared caregiver ... 50

3.3.6 Family conference ... 50

3.3.7 Caregiver’s satisfaction ... 50

3.3.8 Unmet needs ... 51

3.4 Part 1 : Retrospective record review ... 51

3.4.1 Study location ... 51

3.4.2 Study period ... 51

3.4.3 Reference population ... 51

3.4.4 Source population ... 52

3.4.5 Sampling frame ... 52

3.4.6 Study criteria ... 52

3.4.7 Sample size determination ... 52

3.4.8 Sampling method ... 53

3.4.9 Research tools ... 54

3.4.10 Method of data collection ... 55

3.4.11 Data analysis ... 55

3.5 Part 2 : Caregivers’ satisfaction ... 56

3.5.1 Study location ... 56

3.5.2 Study period ... 56

3.5.3 Reference population ... 56

3.5.4 Source population ... 56

3.5.5 Sampling frame ... 56

3.5.6 Study criteria ... 56

3.5.7 Sample size determination ... 57

3.5.8 Sampling method ... 57

3.5.9 Research tools ... 57

3.5.10 Method of data collection ... 59

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3.6 Part 3 : Unmet needs in domiciliary service utilisation ... 60

3.6.1 Study location ... 60

3.6.2 Study period ... 60

3.6.3 Reference population ... 60

3.6.4 Source population ... 60

3.6.5 Sampling frame ... 60

3.6.6 Study criteria ... 60

3.6.7 Sample size determination ... 61

3.6.8 Sampling method ... 61

3.6.9 Research tools ... 61

3.6.10 Method of data collection ... 66

3.7 Data analysis for Part 2 and 3 ... 66

3.8 Ethical considerations ... 70

3.8.1 Subject vulnerability ... 70

3.8.2 Declaration of absence of conflict of interest ... 70

3.8.3 Privacy and data confidentiality ... 71

3.8.4 Community sensitivities ... 71

3.8.5 Honorarium and incentives ... 71

3.8.6 Ethical approval ... 71

3.9 Study flowchart ... 72

CHAPTER FOUR ... 73

RESULTS…… ... 73

4.1 Stroke patients and rehabilitation services ... 73

4.2 The fulfilment of domiciliary care eligibility criteria ... 76

4.3 The caregivers’ satisfaction towards provided domiciliary care services... 77

4.3.1 The factors associated with caregivers’ satisfaction towards provided domiciliary care services ... 82

4.4 The unmet needs among recipient of nursing care visits ... 91

4.4.1 The factors associated with the unmet needs among patients as perceived by the caregiver who are not eligible to receive domiciliary care in Kota Bharu District ... 94

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CHAPTER FIVE ... 105

DISCUSSIONS ... 105

5.1 Type of rehabilitation services received by stroke patients ... 105

5.2 Fulfilment of domiciliary care eligibility criteria ... 108

5.3 The factors associated with caregivers’ satisfaction towards provided domiciliary care services ... 114

5.3.1 Family conference prior to discharge... 115

5.3.2 Duration of stroke diagnosis ... 120

5.3.3 Caregiver’s income ... 121

5.3.4 Caregiver’s strain index ... 122

5.4 The factors associated with the unmet needs among patients as perceived by the caregiver who are not eligible to receive domiciliary care ... 122

5.4.1 Family conference prior to discharge... 124

5.4.2 Caregiver’s strain index ... 126

5.4.3 Number of documented impairment (patient) ... 128

5.4.4 Number of activity limitation (patient) ... 129

5.4.5 Caregiver’s age ... 131

5.4.6 Caregiver’s income ... 132

5.4.7 Patient & caregiver staying together ... 134

5.5 Strengths and limitations ... 135

CHAPTER SIX ... 138

CONCLUSION AND RECOMMENDATIONS ... 138

6.1 Conclusion ... 138

6.2 Recommendations ... 139

REFERENCES.. ... 141

APPENDICES.. ... 152

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LIST OF TABLES

Table Page

Table 2.1 : Score interpretation of modified Rankin Scale

score……….. 31

Table 2.2 : Score interpretation of modified Barthel

Index……….. 32

Table 3.1 : Sample size calculation for objective

1………..……….….. 53

Table 3.2 : Sample size calculation for objective

2……….……….... 53

Table 3.3 : Sample size calculation for objective

3………...….. 57

Table 3.4 : FAMCARE questionnaire………..… 59

Table 3.5 : Exploratory factor analysis of UN-CARE

questionnaire……….. 65

Table 3.6 : Independent variables used for simple linear regression

analysis……….. 67

Table 4.1 : Sociodemographic and clinical characteristic of stroke

patients (n=330)……… 73

Table 4.2 : The proportion of stroke patients who fulfil the domiciliary care eligibility criteria among those referred to primary healthcare team in Kota Bharu district

(n=219)……….. 76

Table 4.3 : Sociodemographic, underlying chronic disease(s), and caregiving characteristics of caregivers in Kota Bharu

district (n=79)……….... 77

Table 4.4 : The FAMCARE items and descriptive statistics

(n=79)………...…. 80

Table 4.5 : The factors associated with overall caregivers’

satisfaction towards provided domiciliary care services in

Kota Bharu District (n=79)………. 82

Table 4.6 : The factors associated with overall caregivers’

satisfaction towards provided domiciliary care services in

Kota Bharu District (n=79)……… 83

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Table Page

Table 4.7 : The factors associated with caregivers’ satisfaction on information giving towards provided domiciliary care

services in Kota Bharu District (n=79)………... 83 Table 4.8 : The factors associated with caregivers’ satisfaction on

information giving towards provided domiciliary care

services in Kota Bharu District (n=79)………... 84 Table 4.9 : The factors associated with caregivers’ satisfaction on

physical care towards provided domiciliary care services

in Kota Bharu District (n=79)………. 85 Table 4.10 : The factors associated with caregivers’ satisfaction on

physical care towards provided domiciliary care services

in Kota Bharu District (n=79)………. 85 Table 4.11 : The factors associated with caregivers’ satisfaction on

psychosocial care towards provided domiciliary care

services in Kota Bharu District (n=79)………... 86 Table 4.12 : The factors associated with caregivers’ satisfaction on

psychosocial care towards provided domiciliary care

services in Kota Bharu District (n=79)………... 87 Table 4.13 : The factors associated with caregivers’ satisfaction on

availability of care towards provided domiciliary care

services in Kota Bharu District (n=79)………... 87 Table 4.14 : The factors associated with caregivers’ satisfaction on

availability of care towards provided domiciliary care

services in Kota Bharu District (n=79)………... 89 Table 4.15 : The factors associated with caregivers’ satisfaction

towards provided domiciliary care services in Kota Bharu

District (n=79)……… 90

Table 4.16 : Sociodemographic, underlying chronic disease(s), and caregiving characteristics of caregivers who are not eligible to receive domiciliary care service in Kota Bharu

district (n=121)………..……. 91

Table 4.17 : The UN-CARE items and descriptive statistics (n=121)… 93 Table 4.18 : The factors associated with overall unmet needs among

patients as perceived by the caregiver who are not eligible to receive domiciliary care services in Kota Bharu district

(n=121)……….. 94

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Table Page

Table 4.19 : The factors associated with overall unmet needs among patients as perceived by the caregiver who are not eligible to receive domiciliary care services in Kota Bharu district

(n=121)……….. 95

Table 4.20 : The factors associated with the unmet needs on supports among patients as perceived by the caregivers who are not eligible to receive domiciliary care services in Kota Bharu

district (n=121)……….. 96

Table 4.21 : The factors associated with the unmet needs on support among patients as perceived by the caregiver who are not eligible to receive domiciliary care services in Kota Bharu

district (n=121)……….. 97

Table 4.22 : The factors associated with the unmet needs on engagement of care among patients as perceived by the caregivers who are not eligible to receive domiciliary care

services in Kota Bharu district (n=121)…….. …………... 98 Table 4.23 : The factors associated with the unmet needs on

engagement of care among patients as perceived by the caregivers who are not eligible to receive domiciliary care

services in Kota Bharu district (n=121)………... 100 Table 4.24 : The factors associated with the unmet needs on benefits

of care among patients as perceived by the caregivers who are not eligible to receive domiciliary care services in

Kota Bharu district (n=121)………... 101 Table 4.25 : The factors associated with the unmet needs on benefit of

care among patients as perceived by the caregivers who are not eligible to receive domiciliary care services in

Kota Bharu district (n=121)……….………... 102 Table 4.26 : The factors associated with the unmet needs (overall and

each subscale) among patients as perceived by the caregivers who are not eligible to receive domiciliary care

services in Kota Bharu district (n=121)……… 103

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LIST OF FIGURES

Figure Page

Figure 1.1 : Neurorehabilitation services for stroke

patients………..………... 20

Figure 2.1 : Neurorehabilitation clinical pathway for stroke patient in

Malaysia………... 38

Figure 2.2 : The model of health care utilisation by Anderson (1995)…. 44 Figure 2.3 : Conceptual framework of study………... 48 Figure 3.1 : A priori sample size calculator for multiple regression

(Soper, D.S. (2018) [Software]. Available from

http://www.danielsoper.com/statcalc... 61

Figure 3.2 : Study flowchart……… 72

Figure 4.1 : The proportion of stroke patient based on rehabilitation services among stroke patient in Kota Bharu District

(n=330)……… 75

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LIST OF APPENDICES

Appendix Form

A Domiciliary referral form (PPD 001/2014)

B Checklist of selection criteria for domiciliary care services (PPD 002/2014)

C Consent form & research information sheet D Patient’s information sheet

E Participant’s information sheet

F Malay Caregiver Strain Index (M-CSI) Questionnaire G Malay FAMCARE Questionnaire

H UN-CARE Questionnaire I Ethical approval (USM) J Ethical approval (NMRR)

K Research approval (Hospital USM) L Research approval (HRPZ II)

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LIST OF ABBREVIATIONS ADL Activity daily living

AOR Adjusted odds ratio

BI Barthel index

CBR Community Based Rehabilitation COPD Chronic obstructive pulmonary disease

CT Computed tomography

CBD Continuous bladder drainage CVDs Cardiovascular diseases DALYs Disability-adjusted Life Years EFA Exploratory Factor Analysis

HRPZ II Hospital Raja Perempuan Zainab II ICC Intra-class correlation coefficient IIR Investigator-Initiated Research IQR Interquartile range

JePEM Jawatankuasa Etika Penyelidikan (Manusia) MBI Modified Barthel Index

M-CSI Malay Caregiver Strain Index MOH Malaysia Ministry of Health MLR Multiple Linear Regression

mRS Modified Rankin Scale

NHS the National Health Service

NICE the National Institute for Health and Clinical Excellence NMRR National Medical Research Register

PPD Program Perawatan Domisiliari

RM Ringgit Malaysia

SD Standard deviation

USM Universiti Sains Malaysia WHO World Health Organisation

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xiii ABSTRAK

KEPUASAN TERHADAP PERKHIDMATAN PERAWATAN DOMISILIARI DAN KEPERLUAN YANG TIDAK DIPENUHI DI KALANGAN PESAKIT

STROK DI DAERAH KOTA BHARU

Penjagaan domisiliari adalah penjagaan pemulihan pelbagai disiplin yang menyediakan kesinambungan penjagaan di peringkat komuniti. Penglibatan penjaga diperlukan dalam menyediakan penjagaan berterusan di rumah dengan bimbingan daripada kakitangan kesihatan. Kajian ini mengenalpasti faktor-faktor yang berkaitan dengan kepuasan penjaga terhadap perkhidmatan perawatan domisiliari dan keperluan yang tidak dipenuhi kalangan pesakit yang tidak layak mendapat perkhidmatan perawatan domisiliari dari perspektif penjaga di daerah Kota Bharu. Kajian ini dibahagikan kepada tiga bahagian iaitu kajian rekod pesakit strok secara retrospektif di HRPZ II dan Hospital USM, kajian kepuasan penjaga terhadap perkhidmatan perawatan domisiliari, dan kajian keperluan yang tidak dipenuhi di kalangan pesakit yang tidak memenuhi kriteria kelayakan perkhidmatan perawatan domisiliari. Tahap kepuasan penjaga diukur menggunakan borang kajian FAMCARE. Keperluan yang tidak dipenuhi dari perspektif penjaga diukur menggunakan borang kajian UN-CARE.

Regresi linear berganda digunakan untuk mengenal pasti faktor yang berkaitan dengan kepuasan dan keperluan yang tidak dipenuhi. Seramai 79 (23.9%) daripada 330 pesakit strok yang dipilih secara rawak menerima perkhidmatan penjagaan domisiliari, sementara yang lain menerima sama ada lawatan perawatan di rumah 121 (36.7%) atau perkhidmatan pesakit luar 130 (39%). Hanya 79 (36.1%) daripada 219 pesakit yang dirujuk untuk penilaian penerimaan perkhidmatan memenuhi kriteria kelayakan.

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Kebanyakan kriteria dapat dipenuhi oleh pesakit kecuali kriteria keberadaan penjaga semasa lawatan terapi. Kepuasan penjaga secara umum, terhadap perkhidmatan perawatan domisiliari dikaitkan dengan perbincangan bersama keluarga sebelum discaj (larasan b= 0.51, 95%CI 0.31,0.69, p<0.001). Kepuasan dari segi pemberian maklumat dan penjagaan fizikal ditentukan oleh perbincangan bersama keluarga sebelum discaj. Selain daripada perbincangan bersama keluarga, kepuasan terhadap subskala penjagaan psikososial dikaitkan dengan tempoh penyakit. Kepuasan dari segi ketersediaan penjagaan ditentukan oleh penjaga yang berpendapatan dan indeks tekanan penjaga. Keperluan yang tidak dipenuhi pada umumnya, di kalangan mereka yang tidak menerima perkhidmatan perawatan domisiliari dikaitkan dengan umur penjaga (larasan b= -0.002, 95%CI -0.004,-5.34×10-5, p=0.044), penjaga berpendapatan sendiri (larasan b= 0.11, 95% CI 0.03,0.19, p=0.008), tekanan penjaga tinggi (larasan b= -0.13, 95%CI -0.18,-0.07, p<0.001), dan perbincangan keluarga sebelum discaj (larasan b= -0.19, 95% CI -0.25,-0.14, p<0.001). Keperluan yang tidak dipenuhi dalam sokongan dikaitkan dengan ketidakupayaan, keterbatasan aktiviti, dan pesakit yang tinggal bersama penjaga. Keperluan yang tidak dipenuhi dalam penglibatan penjagaan dikaitkan dengan umur penjaga, penjaga berpendapatan sendiri, tekanan penjaga yang tinggi, dan perbincangan bersama keluarga sebelum discaj.

Keperluan yang tidak dipenuhi dalam manfaat penjagaan dikaitkan dengan keterbatasan aktiviti, bebanan penjaga yang tinggi, dan persidangan keluarga sebelum discaj. Kajian ini mendapati bahawa perkhidmatan perawatan domisiliari di Kota Bharu umumnya memenuhi matlamat di kalangan mereka yang menerimanya.

Perbincangan bersama keluarga adalah penting bagi mereka yang tidak layak menerima perkhidmatan tersebut.

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Kata kunci: Strok, penjaga strok, pemulihan, kepuasan penjaga, keperluan yang tidak dipenuhi

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xvi ABSTRACT

SATISFACTION TOWARDS DOMICILIARY CARE SERVICES AND THE UNMET NEEDS AMONG STROKE PATIENTS IN KOTA BHARU

DISTRICT

Domiciliary care is a multidisciplinary rehabilitation care which provides the continuity of care at the community setting. It requires the involvement of caregivers in providing continuous care at home with guidance by the health professionals. This study examined the factors associated with caregivers’ satisfaction towards provided domiciliary care services and the unmet needs for care among patients who are not eligible to receive domiciliary care in Kota Bharu district as perceived by the caregiver.

This study was divided into three parts, the retrospective record review of stroke patients from HRPZ II and Hospital USM, a caregiver satisfaction survey for patients who received domiciliary care, and an unmet needs survey as perceived by the caregiver of stroke patients who were not eligible to receive domiciliary care services.

Caregiver satisfaction was measured using the validated FAMCARE questionnaire.

The unmet need was measured using the UN CARE questionnaire. Multiple linear regression was used to identify the determinants of satisfaction and the unmet needs.

Seventy nine (23.9%) of the randomly selected 330 stroke patients received domiciliary care services, whereas others received either nursing care visit 121 (36.7%) or outpatient service 130 (39%). Out of those 219 (66.4%) who were referred to be assessed for eligibility to receive domiciliary care services, only 79 (36.1%) fulfil the eligibility criteria. Most eligibility criteria were fulfilled by most of the patients except availability of caregiver during therapy visit. Caregiver’s satisfaction in

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general, towards provided domiciliary care services was found to have association with the family conference prior to discharge (adjusted b= 0.51, 95%CI 0.31,0.69, p<0.001). Satisfaction in term of information giving and physical care were associated with only family conference prior to discharge. Besides family conference prior to discharge, satisfaction subscale on psychosocial care was also determined by duration of illness. Satisfaction in term of availability of care was also associated with care giver income and strain index. The unmet needs in general, among non-recipient of domiciliary care services was found to be associated with age of caregivers (adjusted b= -0.002, 95%CI -0.004,-5.34×10-5, p = 0.044), caregivers with own income (adjusted b= 0.11, 95%CI 0.03,0.19, p = 0.008), high caregiver’s burden (adjusted b= -0.13, 95%CI -0.18,-0.07, p<0.001), and family conference prior to discharge (adjusted b= - 0.19, 95%CI -0.25,-0.14, p<0.001). Unmet needs on support was associated with impairments, activity limitations, and patient-caregiver who stayed together. Unmet needs on engagement of care was associated with age of caregivers, caregivers with own income, high caregiver’s burden, and family conference prior to discharge. Unmet needs on benefit of care was associated with activity limitations, high caregiver’s burden, and family conference prior to discharge. The study found that the domiciliary care services in Kota Bharu generally met the purpose to those who received. The family conferences were important for those who were not eligible to receive the services.

Keywords : Stroke, stroke caregivers, rehabilitation, caregiver satisfaction, unmet needs

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CHAPTER ONE INTRODUCTION

1.1 Introduction

Stroke is a clinical syndrome characterised by rapid development of clinical symptoms and/or signs of cerebral function loss. The signs and symptoms may be focal or at times global. The symptoms may last more than 24 hours and may even lead to death, with no apparent cause other than that of vascular origin (Ministry of Health Malaysia, 2012) . The stroke prevalence rate has increased in Malaysia for both ischaemic and haemorrhagic type (Aziz et al., 2015). Stroke has also become one of the major contributors of disease burden with its complex short-term or long-term disabilities which lead to significant socioeconomic loss especially among young stroke patients.

The young stroke patients frequently live longer with several disabilities and experience a greater loss in salary earnings over a longer period. The effects and complications of strokes differs individually. Certain stroke patients may experience disability or impairment which are minor and short-termed, while others may be left with serious long-term incapacitation. The immediate or long-standing effects generally involve the same part of the body or the same cognitive function. It is important to become aware of the common effects of stroke and the way to improve the affected person’s physical and emotional well-being and their caregiver not only during hospitalisation but also at the community level. Questions often arise about those life changes to expect and how to gain control and independence in everyday life situations. Those disability or activity limitations that developed after a stroke may improve with further management and care such as attending or receiving intensified stroke rehabilitation services. Stroke survivors who are left with some degree of

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physical or cognitive impairment need a proper post-stroke management called rehabilitation. The goal of stroke rehabilitation is to help them relearn movements or skills that have been lost. Stroke rehabilitation help the patient regain independence and improve their quality of life. The severity of stroke complications and each person's ability to recover varies. Early recovery and rehabilitation can improve functions and sometimes remarkable recoveries for stroke patients.

The World Health Organization (WHO) has introduced domiciliary care, a community-based approach of rehabilitation care and support. Domiciliary care provides care at home to assist someone with disability in their daily life activities.

Malaysia officially started their domiciliary care service in 2014. It aims to provide a holistic treatment services to stable bedridden cases who requires continuity of care including treatment after being discharged from hospital or referred from a health clinic (Ministry of Health Malaysia, 2014). All patients should receive similar services including neurorehabilitation care regardless of their disability after being discharged from hospital. However in view of several technical constraints, assessment on patient’s needs prior to discharge is essential to determine the type of services than can be offered to them for further management at the community level. The community level services provided by the primary healthcare team consist of standard nursing care visits or the caregiver will be equipped with caregiving skills when receiving domiciliary care services (Ministry of Health Malaysia, 2014).

The domiciliary team is a multidisciplinary service which consists of family medicine specialist, medical officer, pharmacist, physiotherapist, occupational therapist, dietitian, speech therapist, social worker, counsellor, medical assistant and staff nurse.

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The care responsibilities were carried out by patients’ caregiver under the supervision and guidance of the team with the aim of reducing the caregivers’ burden. The caregivers will be first equipped with knowledge and skills on proper care in order for them to care for the patient at home (Ministry of Health Malaysia, 2014). Currently, only patients who fulfil the set criteria will be included in the domiciliary care service.

Patients who do not fulfilled the criteria will receive the regular nursing care visits from the primary healthcare team. Nursing care visit provides similar patient care depends on the patient’s clinical condition as in domiciliary care service. In addition to patient care services, domiciliary care train and educate the caregiver on continuous patient care at home. The domiciliary care visits enable caregivers to discuss any issues on patient care with healthcare team. Patients with modified Rankin Scale score of less than 4 usually are more independent in their activity of daily living, thus will receive services from the outpatient clinic either at the hospital or health clinics. The full recovery is nearly impossible for patients with modified Rankin Scale score 4 and 5 (bedridden) as they need help in their activity of daily living (Figure 1).

Figure 1.1: Neurorehabilitation services for stroke patients

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21 1.2 Problem statement

The post stroke incessant rehabilitation and care at the community level only can be achieved with the help of skilful caregivers. Domiciliary care is a community-oriented rehabilitation healthcare service with the aim to equip caregiver with knowledge and proper skills. Family members often rely on the healthcare personnel in the aspect of rehabilitation of caregiving without realizing that they are the most important person in managing the patient. Caregivers need professional support for their tasks of providing the patient with proper care and if this does not happen the caregivers will become the ‘fellow sufferers’ or our ‘silent patient’. Good professional support from domiciliary care team to caregivers, on the other hand, will only be efficient in helping post stroke patient if it is available and accessible to all patients.

Currently, only patients who fulfil the set criteria will be included in the domiciliary care service. Apart from modified Rankin Scale (mRS) score of 4 and 5 which is moderate and severe disabilities, patients will only be eligible to receive domiciliary care service if they had caregivers who agreed and willing to learn patient’s care procedures and if they stay within the team coverage area. Those who do not have caregivers and stay far away from healthcare will only be receiving nursing care visit, thus missing the opportunity of a better post stroke care. These group of patients may be the one who need care the most to survive from stroke and regain better quality of life.

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22 1.3 Study rationale

All stroke patients need multidisciplinary team approach of neurorehabilitation regardless of their disability. There are limitations in most of the healthcare service provided. Caregivers’ satisfaction on the received care can be a proxy indicator for the efficiency of the provided service. As for the group who are not eligible to receive the domiciliary care, identifying their unmet needs despites the eligibility criteria can help service providers to understand the rights and needs of the patient as perceived by their caregiver. The information from this study may provide guidance to the local healthcare providers in improving the current service to an optimal level of rehabilitation services even though it do not evaluate thoroughly the effectiveness of neurorehabilitation care services. Continuous and accessible services to all patients and their caregivers on the supports and alternatives pertaining to the needs will further improve the patients' care. This will ultimately help to improve not only the quality of life of the patient but also their caregivers.

1.4 Research question(s)

1. What is the proportion of stroke patient utilising different types of rehabilitation services?

2. Which eligibility criteria of domiciliary care does the patients failed to fulfill?

3. What are the associated factors of caregivers’ satisfactions towards the current provided domiciliary care services?

4. What are the unmet needs among those patients who are not eligible to receive domiciliary care?

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23 1.5 Objective

1.5.1 General objective

To study the domiciliary care service satisfaction and unmet needs among stroke patients in Kota Bharu District.

1.5.2 Specific objectives

1. To describe the different types of rehabilitation services received by stroke patients in Kota Bharu District.

2. To describe the proportion of stroke patients who fulfil the eligibility criteria of domiciliary care services among those referred to primary healthcare team in Kota Bharu District.

3. To identify the factors associated with caregivers’ satisfaction towards provided domiciliary care services in Kota Bharu District.

4. To identify the factors associated with the unmet needs among patients as perceived by the caregiver who are not eligible to receive domiciliary care in Kota Bharu District.

1.6 Research hypothesis

1. There is significant relationship between sociodemographic characteristics of patients and their caregiver, and clinical characteristics of patients with mean satisfaction score towards domiciliary services among caregivers of stroke patients in Kota Bharu District.

2. There are unmet needs among stroke patients as perceived by the caregivers who are not eligible to receive domiciliary care service in Kota Bharu district.

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CHAPTER TWO LITERATURE REVIEW

2.1 Introduction to stroke

Cardiovascular diseases (CVDs) are a group of disorders of the heart and blood vessels. They include coronary heart disease, cerebrovascular accident, rheumatic heart disease and other conditions (World Health Organization, 2017).

Cerebrovascular accident or stroke was defined by the World Health Organization (WHO) as a rapidly developing clinical signs of focal or global disturbance of cerebral function, with symptoms lasting more than 24 hours or leading to death, with no apparent cause other than of vascular origin.

Stroke was broadly categorized as ischemic or haemorrhagic. It occurs when part of the brain does not receive enough blood flow for one of two reasons either the blood supply to part of the brain is suddenly interrupted (ischaemic), or because a blood vessel in the brain ruptures and invades the surrounding areas (haemorrhagic).

Ischemic stroke can occur either due to atherothromboembolism, intracranial small vessel disease, or cardiogenic embolism (Ministry of Health Malaysia, 2012) . While haemorrhagic stroke can be caused by aneurysms or arteriovenous malformations (Gund et al., 2013).

Patients who have had a stroke are susceptible to many complications either medical or neurological complications. Common medical complications are recurrent stroke, coronary heart disease, gastrointestinal bleed, and complications as the result of immobilisation such as aspiration pneumonia, systemic infection, deep vein

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