Ph.D. Thesis on HBC by RS Mehta.pdf

HOME-BASED CARE TO THE PEOPLE LIVING WITH
AIDS: A STUDY OF EASTERN RURAL NEPAL
A dissertation
Submitted to the Faculty of Humanities and Social Sciences of
Tribhuvan University in fulfilment of the requirements for the
Degree of DOCTOR OF PHILOSOPHY
in
RURAL DEVELOPMENT
By
RAM SHARAN MEHTA
Ph.D. Reg. No. 43/2064 Shrawan
T.U. Reg. No. 5865-83
July 2011

LETTER OF RECOMMENDATION
We certify that this dissertation entitled “Home-Based Care to the People Living
with AIDS: A Study of Eastern Rural Nepal” was prepared by RAM SHARAN
MEHTA under our guidance. We hereby recommend this dissertation for final
evaluation by the Research Committee of the Faculty of Humanities and Social
Sciences, Tribhuvan University, in fulfillment of the requirements for the Degree of
DOCTOR OF PHILOSPHY in RURAL DEVELOPMENT.
__________________
Dr. Uma Kant Silwal
Supervisor
Associate Professor
Central Department of Rural Development
Trubhuvan University
______________________
Prof. Dr. Sarala Shrestha
Expert
Maharajgunj Nursing Campus
Institute of Medicine
Tribhuvan University
Date: 22nd
July 2011

APPROVAL LETTER
This dissertation entitled “Home-Based Care to the People Living with AIDS: A
Study of Eastern Rural Nepal” was submitted by Mr. Ram Sharan Mehta for final
examination by the Research Committee of the Faculty of Humanities and Social
Sciences, Tribhuvan University, in fulfillment of the requirements for the Degree of
Doctor of Philosophy in Rural Development. I hereby certify that the Research
Committee of the Faculty has found this dissertation satisfactory in scope and quality
and has therefore accepted it for the degree.
______________________
Prof. Nav Raj Kanel, Ph.D.
Dean and Chairman
Research Committee
Faculty of Humanities and Social Sciences
Tribhuvan University, Nepal
Date :

DECLARATION
I hereby declare that this Ph.D. dissertation entitled “Home-Based Care to the People
Living with AIDS: A Study of Eastern Rural Nepal” I have submitted to the Office
of the Dean, Faculty of Humanities and Social Sciences, Tribhuvan University (TU),
is entirely my original work prepared under the supervision of my supervisor. I have
made due acknowledgements to all ideas and information borrowed from different
sources in the course of writing this dissertation. The results of this dissertation have
not been presented or submitted anywhere else for the award of any degree or for
any other purpose. No part of the contents of this dissertation has ever been
published in any form before. I shall be solely responsible if any evidence is found
against my declaration.
...................................
Ram Sharan Mehta
Tribhuvan University
Date:

ACKNOWLEDGEMENTS
I am thankful to the faculty of Humanities and Social Sciences, Tribhuvan
University (TU) for giving me the opportunity to conduct this study as a requirement
of the Ph D programme.
It is my proud privilege to express my profound sense of gratitude and heartfelt
thanks to my esteemed supervisor Associate Professor Dr. Uma Kant Silwal, Central
Department of Rural Development (CDRD), Tribhuvan University, Kirtipur for his
continued valuable guidance and support throughout the period of this study. His
motivational efforts, general assistance, clues to proceed further have proved a great
source of inspiration to me for bringing this project to fruitful conclusions.
I am deeply indebted and will remain ever grateful to Prof. Dr. Sarala Shrestha,
Maharajgunj Nursing Campus, Institute of Medicine, Tribhuvan University for
enabling me to comprehend the study and supporting me right from the selection of
the problem to the conclusion of the research project and also for her professional
expertise, guidance and encouragement.
My heartfelt thanks go to the Head of Department, Prof. Dr. Pradeep Khadka,
CDRD, TU, Kirtipur, and members of faculty of CDRD whose affection,
encouragement and inspiration were a source of enduring strength for me.
I am extremely thankful to Prof. Dr. Nav Raj Kanel, Dean, FoHSS and Dr. Tara Kant
Pandey, Assistant Dean, FoHSS, TU, and research committee members for
permitting me to conduct this study and providing me moral support.
I humbly acknowledge my heartfelt gratitude to Prof. Dr. Purna Chandra
Karmacharya, Vice Chancellor, Prof. Dr. Rupa Rajbhandari Singh, Rector, Prof. Dr.
B. P. Das, Hospital Director, Chief, College of Nursing, Head of Department of
Medical Surgical Nursing and other concerned authorities of B.P. Koirala Institute of
Health Sciences (BPKIHS) for their continuous support and encouragement.
I take this opportunity to express my sincere thanks to the Member Secretary and
members of Ethical Review Board, BPKIHS for giving ethical clearance to conduct
this study.

I express my deep sense of gratitude to the hospital Director/Medical
Superintendents of BPKIHS, Koshi Zonal Hospital (KZH), Mechi Zonal Hospital
(MZH) and Sagarmatha Zonal Hospital (SZH) for permitting me to collect the
information from their hospital records, staffs, PLWHA and their caregivers
attending the hospital for services.
My special thanks are due to the Programme Coordinators of Home Based Care,
President, Chair Person and other staffs of NGOs, Dharan Positive Group, KYC,
Nav Kiran Plus, Family Health Centre, Lav Kus Ashram, NAPN and Members of
District AIDS Coordination Committee (DACC) of Sunsari, Morang and Jhapa
Districts for providing the relevant information about home based care and related
aspects.
I have no words to express my gratitude to the doctors of ART-Clinic, VCT-Nurses,
VCT-Counsellor of BPKIHS, Koshi Zonal Hospital, Mechi Zonal Hospital and
Sagarmatha Zonal Hospital, and key informants Ms. Anjeer Shrestha, (BPKIHS),
Mr. B.P. Chaudhary (MZH), Ms. Laxmi Gautam (KZH), Dr. Lekh Jung Thapa
(BPKIHS), Ms. Kamala Baral (Nav Kiran plus), Ms. Sharmila Sharstha (Family
Health Centre), Ms. Laxmi Chaudhary (SZH) and Mr. Kapil Thapa (DACC,
Morang), who have also supported me in data collection, focus group discussion and
collecting information from People living with HIV/AIDS and their caregivers.
I can not forget my respondents, the people living with AIDS and their caregivers for
their cooperation and participation in the study. Without their cooperation the study
would have been impossible.
I express my sincere thanks to all the nursing staffs of Tropical ward of BPKIHS and
all the ART/VCT counsellors and staffs of BPKIHS, KZH, SZH and MZH.
I take this opportunity to express my sincere thanks to the staff of NCASC and
UNAIDS for providing me the resource materials on HIV/AIDS.
My special thanks are due to Mr. D.D. Baral, Assistant Professor, Statistian,
BPKIHS, for his statistical assistance and support.
My heartiest thanks are due to Mr. Swayam Prakash Sharma for undertaking the
laborious task of editing my thesis.

I take this opportunity to express heartfelt thanks to Prof. Dr. Prahlad Karki, HOD,
Department of Internal Medicine, BPKIHS; Prof. Dr. Suman Rijal, In-charge,
Infectious and Tropical Disease Unit, BPKIHS; Prof. Dr. Nilamber Jha, Chief,
School of Community Medicine and Public Heath, BPKIHS; Prof. Dr. Sudha
Agrawal, HOD, Department of Dermatology and Coordinator of Clinical
Epidemiology Unit, BPKIHS; Prof. Dr. C.B. Jha, Researcher; Dr. M.L. Das,
Researcher, Dr. S.R. Niraula, Statistician; Dr. Iswari Sharma Paudel, Demographer;
Mr. Sailesh Adhikari, Sociologist; Prof. Dr. Fedrick Conel, USA, Visiting Public
Health Faculty, BPKIHS; Prof. Dr. Pramod Mohan Sangwa, HOD, Department of
Psychiatric, BPKIHS; Prof. Dr. G.K. Singh, Epidemiologist; Prof. Dr. R.M. Pandey,
Statistician, and Prof. Dr. Nita Pokhrel, former Chief, College of Nursing for their
contribution during the course of project development and tool validity.
I wish to express my special appreciation to all those who encouraged me for
enrollment in Ph D. I owe much of the credit for this study to the reference sources
cited.
I humbly acknowledge my heartfelt gratitude to the University Grant Commission
for providing me the Ph D scholarship grant and technical support.
I want to express my heartfelt thanks to those who have helped me directly and
indirectly during the course of this study.
Above all my sincere thanks to God, the Almighty for giving me courage as it is
said, “God helps those who help themselves”.
_________________
Ram Sharan Mehta
Date:

ABSTRACT
HIV/AIDS is a worldwide epidemic. For social and economic development, it is a
great issue. HIV and AIDS continue to spread rapidly throughout Africa and Asia,
especially among young people aged 15-24 years. In world 33.2 million people
living with HIV and 50,000 people infected each year. In Asia 8.3 million are
infected with HIV. In Nepal first case of HIV was detected in 1988. It is estimated
that 70,000 people are infected with HIV with prevalence in general population
0.55%.
It has been estimated that up to 90 percent of illness care may be provided in the
home by untrained family and associates, and up to 80 percent of AIDS related
deaths occur in the home.
Home based care is the care in the home which responds to the physical, social,
emotional and spiritual needs of PLWA from diagnosis to death and through
bereavement. It aims to reduce suffering and increase quality of life by providing
responsive care, including self-care skills, linking clients to needed services and
empowering PLWA to manage in the home.
The objectives of this study were to investigate the home-based care aspects of the
people living with AIDS and their caregivers; to find out the relationships between
socio-demographic variables and home-based care aspects of PLWA and their
caregivers; to explore the effects on the caregivers and their family related to PLWA;
and to implement and evaluate an education intervention programme on home based
care to the people living with AIDS and their caregivers.
This study has two parts. In the first part there is aspect analysis of home based care
and in the second part an education intervention programme on home based care was
carried out.
The first part of the study was conducted with descriptive cross sectional research
design using both qualitative and quantitative methods including Interview, Focus
Group Discussion, Case Study and Key Informant Interview. The study area was
eastern region of rural Nepal. The people living with AIDS (PLWA) on Anti-
Retroviral therapy (ART) for more than three months and their primary caregivers
residing in eastern rural Nepal constitute the target population of the study. The
PLWA on ART therapy and their caregivers residing in eastern region of Nepal who

fulfilled the set selection criteria was the sample of this study. Total 125 caregivers
of PLWA were included in the study for individual interviews and 14 PLWA were
included for case study. Six slots of focus group discussion (FGD) involving 9-11
caregivers in each slot were arranged. Thirteen Key Informant Interviews were also
carried out to collect the relevant information from concerned persons involved in
the care of people living with AIDS.
The lists of all the PLWA belongs to Village Development Committee (VDC) were
prepared from the register of ART centers of eastern Nepal and a sampling frame
was prepared. Total enumerative sampling technique was used to collect the data
from caregivers of people living with AIDS. The PLWA on ART therapy for more
than three months and their caregivers were only included in the study.
In the second part, education intervention programme, as a pilot project was
designed to care for the PLWA using pre-test post-test pre-experimental research
design. This programme was conducted at ART centre of B.P. Koirala Institute of
Health Sciences on every Monday, Wednesday and Friday from 11am to 1pm
continuously for 8 weeks; from 1st
February to 30th
March 2011, so that each
participant would get minimum of two chances to participate in the education
intervention programme on the day of ART clinic.
As per ART clinic record of 2009, it was found that a total 722 PLWHA were
registered in all the four ART centers of eastern region of Nepal and among those
total 299 were on ART and from 299 PLWA, 139 PLWA were from village
development committee. Out of 139, only 125 caregivers of people living with AIDS
who met the selection criteria were included in the study. It was found that most of
the primary caregivers were female (69.6%), Hindus (92.0%), illiterate (49.6%), and
unemployed (24.8%). The wives (55.2%) were the main caregivers.
The majority of the (75.2%) people living with AIDS (PLWA) cared at home by the
caregivers was of age group of 25-40 years and married (76.0%). Most of the PLWA
(77.0%) had suffering with HIV infection for more than 6 months. Majority of the
PLWA (78%) on ART for more than 6 months. Forty seven percent of the PLWA
from Morang district, 32.0% from Jhapa and 8.0% from Sunsari district.
Only 12.0% caregivers received home based care training, whereas 52.5% had
participated in health education programme on HIV/AIDS. Majority of caregivers
(60.0%) had limited knowledge about HIV/AIDS, 22.4% caregivers reported high
risk of HIV transmission, whereas 20.8% reported moderate risk. The knowledge
about home based care among caregivers was low. Most of the caregivers reported

high caregiver burden (67.2 %) and high family burden (57.6 %). The majority of
caregivers was suffering from stress and anxiety (60.0%), insomnia (56.0%),
digestion problem (51.2%), loneliness (58.4%), headache (55.2%) and care under
cover (56.8%). Most of the caregivers reported the problems in their social life
(67.2%), privacy (75.2%), financial problems (82.4%) and problems of
discrimination (59.2%). Only 32.0% caregivers reported that they were fully
prepared to provide the care to PLWA; whereas, 38.4% reported adequately
prepared, 25.6% reported somewhat prepared and 4.0% reported not prepared at all.
Most of the caregiver (83.0%) spent 3-9 hrs/week on care of PLWA, 12.0% received
formal HBC training and 52.5% participated in health education programme on
HIV/AIDS. Majority of the caregivers (60.0%) had only limited knowledge on
HIV/AIDS. The high risk of HIV transmission reported by caregivers is 22.4% ,
20.8% reported moderate risk, 37.6% caregivers were HIV positive and 19.2% do
not know about transmission of HIV. The services provided by caregivers were
emotional support (44.2%), helping in ADL (57.6%), health care advocacy (62.4%)
and nursing care (60.8%) to the people living with AIDS.
The association calculated using Chi-squire test between the demographic variables
with home based care aspects found statistically significant with age group and
health problems of caregivers (p < 0.001), income and health problems of caregivers
(p =0.03), marital status and health problems of caregivers (p = 0.02) but not
significant with sex and health problems of caregivers (p =0.25). The association
calculated using Chi-squire test between demographic variables and caregiver
burden found significant association with marital status (p =0.02) and religion (p
=0.023). Similarly, the association calculated between demographic variables and
family burden score were not significant at 0.05 level of significance.
The association calculated between the all 15 components of caregiver burden and
20 components of family burden found statistically significant at 0.05 level of
significance. The association calculated using McNemar Chi-squire test between the
difference in scores of pre-test and post-test after education intervention programme
on home based care found significant in most of the variables at 0.05 level of
significance.
The findings of the study obtained from caregivers of people living with AIDS are
supported by the results obtained from Case Study, Focus Group Discussion, and
Key Informant Interview. The provision of appropriate care at all levels is hampered
by the lack of human, technical and financial resources; continuing high levels of

stigma; and the fact that most people living with HIV/AIDS today do not know they
are infected.
The care giving process placed considerable demands on caregivers at household
level, negatively impacting on their mental health. Insufficient support, lack of
income and dire poverty experienced by most respondents, and the added
responsibilities of caring for other household members exacerbated the psychosocial
impact. The lack of support that the household caregiver received was as debilitating
as the caring process. These issues need urgent attention at policy and programme
levels.
The findings of the study have implications in the capacity building of caregivers of
PLWA for enhancing the quality of life of PLWA. It is recommended that National
Centre for AIDS and STD control (NCASC) continue to support increasing access to
community and home-based care as part of its national strategy and identify ways in
which to expand and integration of these services into the public health care system.

TABLE OF CONTENTS
LETTER OF RECOMMENDATION ii
APPROVAL LETTER iii
DECLARATION iv
ACKNOWLEDGEMENTS v
ABSTRACT viii
LIST OF TABLES xviii
LIST OF FIGURES xviii
ABBREVIATIONS AND ACRONYM xx
CHAPTER I
INTRODUCTION
1.1 Background 1
1.2 General and Specific Objectives 4
1.4.1 General Objective 4
1.4.2 Specific Objectives 4
1.3 Hypotheses 5
1.4 Operational Definitions 5
1.4.1 People living with AIDS (PLWA) 5
1.4.2 Home Based Care 5
1.4.3 Eastern Rural Nepal 5
1.4.4 Aspects Analysis 6
1.4.5 Home Based Care Aspects 6
1.4.6 Effects on the Family 6
1.4.7 Caregiver 6
1.4.8 Family 6
1.5 Variables of the Study 6
1.5.1 Independent Variables 6
1.5.2 Dependent Variables 7
1.6 Rationale of the Study 7
1.7 Conceptual Framework of the Study 11
1.8 Chapter Outline 14

CHAPTER II
REVIEW OF THE LITRATURE
2.1 Overview of HIV/AIDS Situation 16
2.1.1 Global Picture 17
2.1.2 Asian Situation 17
2.1.3 South-East Asia Region 17
2.1.4 Situation in Nepal 19
2.2 Pathogenesis of HIV/AIDS 20
2.2.1 Definition of HIV/AIDS 20
2.2.2 Causes and Transmission of HIV/AIDS 21
2.2.3 Pathology of HIV/AIDS 23
2.3 Epidemiology of HIV/AIDS 25
2.3.1 The Current HIV Epidemic in Nepal 26
2.3.2 Reasons for Fuelling the Epidemic 26
2.3.3 Reasons for Growing Problems of HIV/AIDS in Nepal 31
2.4 Treatment, Care and Support for PLWA 32
2.4.1 Caregiver of PLWA 34
2.4.2 Home Based Care to the PLWA 35
2.4.3 Care of Dying PLWA at Home 35
2.4.4 HIV/AIDS and Quality of Life 36
2.5 Stigma and Discrimination related to HIV/AIDS 39
2.6 Conflict and HIV/AIDS 42
2.7 Need of the People Living with HIV/AIDS 44
2.7.1 Home Based Care Providers: Knowledge, Attitude, and
Practices 47
2.7.2 Rights of the Infected, Affected and Vulnerable Groups 48
2.8 Importance of Home Based Care Services 49
2.8.1 Home Based Care Aspects of Care Provider 52
2.8.2 The Burden of Health Care Provider Burnout 54
2.8.3 Care for the Caregiver 56
2.8.4 Home Based Care Services 60
2.8.5 Home Care Models 60
2.8.6 Mobilization of Community Resource 63
2.8.7 Cost of Home Based Care 64

2.8.8 The Burden of Care 65
2.9 Expanding Care Continuum for HIV/AIDS 66
2.9.1 Issues and Challenges of HIV/AIDS Prevention and
Treatment Programme in Nepal 69
2.10 HIV/AIDS and Rural Development 71
2.10.1 The Impact of the Disease on People and Societies 71
2.10.2 Rural Dimensions of HIV/AIDS 73
2.10.3 Impact on Rural Development 75
2.10.4 HIV/AIDS, Poverty and Development 77
2.10.5 HIV/AIDS and Child Labour 80
2.10.6 HIV/AIDS in Rural Communities: A New Set of Challenges 81
2.10.7 HIV/AIDS, Agricultural and Rural Development 82
2.11 Effects of HIV/AIDS on Caregiver, Family and Community 82
2.11.1 The Impact of HIV/AIDS on Informal Caregiver 84
2.11.2 Advocacy, Policy, Legal Reform and Human Rights 85
2.12 Ways to Improve the Status of HBC and Rural Development: Multi-
Sectoral Approach 87
2.13 Recent Data and Information Related to Home Based Care 82
2.14 Summary of Literature Review 93
CHAPTER III
METHODOLOGY
3.1 Nature and Source of Data 97
3.2 Description of Study Area 98
3.3 Research Design 98
3.4 Universe Population and Sample 99
3.5 Sampling Technique 99
3.6 Research Instrument 100
3.6.1 Interview with caregivers 101
3.6.2 Focus Group Discussion with Caregivers 101
3.6.3 Case Study with People Living with AIDS 102
3.6.4 Key Informant Interview 102
3.7 Validity and Reliability of the Tool 102
3.7.1 Pre-testing of the Tool 102

3.7.2 Reliability of the Tool 103
3.7.2.1 Reliability Test of Caregiver Burden Scale 103
3.7.2.2 Reliability Test of Family Burden Scale 104
3.8 Data Collection Procedure 104
3.9 Education Intervention Programme 105
3.10 Ethical Issues of the Research 107
3.11 Data Analysis 108
3.12 Limitations of the Study 108
CHAPTER IV
ANALYSIS AND INTERPRETATION OF DATA
4.1 Data obtained by Interviewing Caregivers 111
4.1.1 The Association Between Demographic Characteristics,
Home Based Care Aspects, Caregiver Burden and Family
Burden 127
4.1.2 The Association Between Values (<60% and ≥60%) of Home
Based Care Aspects, Caregiver Burden, Family Burden, and
Demographic Characteristics 128
4.2 Results of Case Study Obtained from PLWA 134
4.2.1 Major Findings of Case Study 136
4.3 Results of Focus Group Discussion 139
4.4 Results of the Key Informant Interview 142
4.4.1 Care Provider 142
4.4.2 Adequacy of Care Received by PLWA at their Home 142
4.4.3 Importance of HBC 143
4.4.4 Discrimination in Home and Community 143
4.4.5 Stigma in Society 143
4.4.6 Support from NGOs and INGOs at Community Level 144
4.4.7 Status of PLWA at Home and Community 144
4.4.8 Major Needs of PLWA at their Own Home 144
4.4.9 Problems of Caregivers 144
4.4.10 Some Other Important Findings of Key Informant Interview
were 145
4.4.11 Suggestions for Better HBC Services for PLWA 146
CHAPTER V

PRE-TEST POST-TEST RESULTS OF EDUCATION
INTERVENTION PROGRAMME ON HOME BASED CARE
5.1 Results of the HBC Education Intervention Programme 149
5.2 Discussion of the Results of Education Intervention Programme 158
CHAPTER VI
SUMMARY AND DISCUSSION
6.1 Summary of the Study 160
6.2 Discussions 163
6.2.1 Demographic Profile of People living with AIDS 163
6.2.2 HIV and ART status of people living with AIDS 164
6.2.3 Demographic Profile of Caregivers 165
6.2.4 Knowledge about HIV/AIDS among Caregivers 165
6.2.5 Service Provided by the Caregivers 166
6.2.6 Preparation of Caregivers 167
6.2.7 Problem faced by Caregivers 167
6.2.8 Association between Demographic Characteristics of
Caregiver with Home Based Care Aspects, Problem Faced by
Caregiver, Caregiver Burden, Family Burden and Related
Aspects 169
6.2.9 Association between Caregiver Burden and Family Burden 171
6.2.10 Association between knowledge, Skill and Practice related to
care of Health Problems of People Living with AIDS before
and after Education Intervention Programme 172
CHAPTER VII
CONCLUSION AND RECOMENDATIONS
7.1 Conclusion of the Study 174
7.2 Recommendations of the Study 178
7.3 Areas for Further Studies 180
7.4 Implications of the study 181
APPENDICES 182-244
Appendix I Interview Questionnaire for Caregiver 182
Appendix II Focus Group Discussion Guidelines 191
Appendix III Case-Study Guidelines for PLWA 194

Appendix IV Key Informant Interview Guidelines 196
Appendix V List of Experts Consulted for tool Validity 197
Appendix VI Informed Consent Form 198
Appendix VII List of INGOs/NGOs Actively Involved in Care of
People Living with HIV/AIDS in Eastern Nepal 199
Appendix VIII Association between Demographic Characteristics of
Caregivers with Home Based Care Aspects 200
Appendix IX Association between Demographic Characteristics of
Caregivers with Problem faced by Caregivers 201
Appendix X Association between Demographic Characteristics of
Caregivers with Caregiver Burden 202
Appendix XI Association between Demographic Characteristics of
Caregivers with family Burden 203
Appendix XII Association between Caregiver Burden with Family
Burden 205
Appendix XIII Detailed Description of Focus Group Discussion 209
Appendix XIV Detailed of Key Informant Interviews 217
Appendix XV Treatment and Care (Anti-Retroviral Therapy) Sites 227
Appendix XVI CD-4 Test and Facs Calibre Sites 228
Appendix XVII Prevention of Mother to Child Transmission of HIV
Sites 229
Appendix XVIII HIV and AIDS Epidemic Update of Nepal 230
Appendix XIX HIV Testing and Counseling Services in Nepal 231
Appendix XX Cumulative HV/AIDS Situation of Nepal 232
Appendix XXI List of Contents of Home Based Care Booklet 233
Appendix XXII Logistic Regression between Caregiver Burden with
selected Demographic Variables and HBC Aspects
Variables 237
Appendix XXIII Logistic Regression between Family Burdens with
selected Demographic Variables and HBC Aspects
Variables 238
Appendix XXIV Interview Questionnaire: Pré-test /Post-test 239
Appendix XXV Time Table of Education Intervention Programme 243
Appendix XXVI Ethical Clearance Letter from IERB, BPKIHS 244
LIST OF PLATES 245-249
REFERENCES 250-265

LIST OF TABLES
2.1 HIV Burden and Access to Antiretroviral Treatment in SEAR
Countries 29
3.1 Details of Sampling Procedure 100
4.1 Demographic Characteristics of the People Living with AIDS 111
4.2 HIV/AIDS and Related Aspects of the PLWA 112
4.3 Socio-demographic Characteristics of Caregivers 113
4.4 Occupation and Economic Status of Caregivers 114
4.5 Home Based Care Related Aspects of Caregivers 115
4.6 Knowledge about HIV/AIDS among Caregivers 116
4.7 Knowledge about causes and Transmission of HIV among
Caregivers 117
4.8 Services Provided by the Caregivers to People Living with AIDS 118
4.9 Help and Support Received by Caregivers from INGOs/NGOs
Personnel 118
4.10 Preparation of Caregivers to Provide care to Health Problems to
PLWA 119
4.11 Ability of Caregivers to Measure the Symptoms of PLWA 120
4.12 Problem Faced or Habits Developed by Caregivers Related to Care
of PLWA 121
4.13 Satisfaction among Caregivers in Providing HBC to the PLWA 121
4.14 Responsibilities Perceived by Caregivers Providing HBC to the
PLWA 122
4.15 Effects on Caregivers Related to Care of PLWA 123
4.16 Needs of the Caregivers to Provide Better HBC to the PLWA 124
4.17 Caregiver Burden Based on Caregiver Burden Scales 125
4.18 Family Burden Based on Family Burden Assessment Scale 126
4.19 Association Between Characteristics of Caregiver with Home Based
Care scores 129
4.20 Association Between Demographic Variables of the Caregiver with
Family Burden Scores 130
4.21 Association Between Demographic Characteristics with Family
Burden Scores 131
4.22 Association Between Home Based Care Aspects with Caregiver
Burden Scores 132

4.23 Association Between Home Based Care Aspects with Family
Burden Scores 133
4.24 Association Between Family Burden Scores with Caregiver Burden
Scores 133
4.25 Demographic Characteristics of the PLWA Included in Case Study 134
4.26 HIV and Related Aspects of the PLWA Included in Case Study 135
4.27 Problem Faced by the People Living with AIDS (Multiple
Responses) 136
5.1 Comparison of Socio-demographic Characteristics of the PLWA and
their Caregivers involved in Education Intervention Programme 150
5.2 ART and HIV Related Status of the PLWA and their Caregivers 151
5.3 Knowledge Related to HIV/AIDS and HBC among PLWA and their
Caregivers 152
5.4 Differences in knowledge about drugs used in the Management of
OIs among Caregivers after Education Intervention 153
5.5 Differences in Ability to access the Vital Status among the PLWA
and their Caregivers after Education Intervention 154
5.6 Differences in knowledge and Practices on Using Preventive
Measures after Education Intervention 155
5.7 Differences in the Ability to Manage the Common OI Symptoms at
Home 156
5.8 Suggestions given by Caregiver to improve HBC at their Home 156
5.9 Evaluation Related of the Education Intervention Programme 157
LIST OF FIGURES
1.1 Conceptual Framework based on WHO HIV/AIDS Care Continuum
Model 14
2.1 HIV/AIDS Situation in Nepal: At a Glance 30

LIST OF ABBREVIATIONS AND ACRONYMS
AIDS Acquired Immune Deficiency Syndrome
ARV Anti-Retroviral
ART Anti-Retroviral Therapy
BPKIHS B. P. Koirala Institute of Health Science
BTS Blood Transfusion Service
CBO Community Based Organization
CHBC Community Home Based Care
CSW Commercial Sex Worker
DoHS Department of Health Services
FCHV Female Community Health Worker
HBC Home Based Care
HIV Human Immunodeficiency Virus
IDU Injecting Drug User
IEC Information, Education and Communication
ILO International Labour Organization
INGO International Non Government Organization
MDR Multi-Drug Resistance
MoH Ministry of Health
MSM Men Who Have Sex with Men
NCASC National Center for AIDS and STD Control
NACC National AIDS Coordination Committee
NFE Non Formal Education
NGO Non Government Organization
NHEICC National Health Education, Information and Communication
Center
NHTC National Health Training Center
NRCS Nepal Red Cross Society
OI Opportunistic Infection
PLWA People Living with AIDS
PLWHA People Living With HIV and AIDS
PMTCT Prevention of Mother to Child Transmission
STD Sexually Transmitted Disease
STI Sexually Transmitted Infection
VCT Voluntary Counseling and Testing
VDC Village Development Committee
UNGASS United Nations General Assembly Special Session

CHAPTER I
INTRODUCTION
1.1 Background
Globally more than 34 million people were living with HIV at the end of 2010
(UNAIDS, 2010). Total 30.8 millions of adults and 2.5 million children were living
with HIV in 2009. The people newly infected with HIV in 2009 were 2.6 million;
total AIDS deaths were 1.8 million and over 7000 new HIV infections a day. About
97% of people living with HIV were in low and middle income countries (UNAIDS,
2009).
Social and economic vulnerabilities, including poverty and illiteracy, highlight the
need to act effectively and aggressively to reduce its spread. South Asia has about
4.2 million of the world’s 36 million people living with HIV/AIDS. While overall
prevalence rates remain relatively low, the region’s large populations mean that a
rise of a mere 0.1percent (NCASC, 2007).
Delay in diagnosing HIV infection, continuing stigma, the high cost of the drugs for
treating the disease, and limited health system capacity is preventing more than a
million people in South-East Asia from receiving vital HIV treatment, prevention
and care. More than two out of three HIV-infected people in need of treatment do not
receive life-saving antiretroviral treatment in WHO’s South-East Asia Region. Only
577000 people (32%) of those in need receive this treatment. The Region has the
second highest burden of HIV in the world after Sub-Saharan Africa; with an
estimated 3.5 million people infected and 230 000 AIDS-related deaths. An
estimated 1.3 million women aged 15 and above currently live with HIV in the
Region. The estimated number of children living with HIV increased by 46% during
2001 to 2009 (NCASC, 2009)
Lack of information about the disease is a significant contributing factor to the
escalation of HIV/AIDS. The communities most affected by HIV/AIDS lack the

most basic information about health care, human, sexual and reproductive rights
(Underwood, 2006).
The current situation of HIV in Nepal is different from when the first case was
diagnosed in 1988. There are gaps and challenges to be addressed in the fight against
HIV and AIDS. Nepal is low prevalence (0.5 percent) country for HIV and AIDS.
However, some of the groups show evidence of a concentrated HIV epidemic e.g.
sex workers (19.5 %,) migrant population (4.0 to 10.0%), and intravenous drug users
(IVDU's), both in rural and urban areas (68.0 %). Since 1988, MoHP/DoHS and
different stakeholders came forward to address HIV and AIDS issues. The main
focus was given to preventive aspects. In 1995 MoHP in consultation with different
stakeholders developed a policy for the control of HIV and AIDS. However, the
activities were implemented in a sporadic and disorganized manner (NCASC, 1996).
National Centre for AIDS and STDs Control (NCASC)/Ministry of Health and
Population (MoHP) came to the conclusion that every stakeholder working in the
field of HIV and AIDS should come forward and work under one umbrella within
the framework of a single policy. As a result in 2002 a new strategy for HIV and
AIDS was developed for 5 years (2002 to 2006) and consequently an operational
work plan was developed for 5 years (2003 to 2007). However, there are many gaps
that were not identified during development of the New Strategy Guidelines that
need to be addressed while revising it in 2006. The new strategy spotlights the
following main areas i.e. vulnerable groups, young people, treatment, care and
support, epidemiology, research and surveillance, management and implementation
of an expanded response (NCASC, 2006).
Broad political commitment, a multi-sectoral approach, civil society involvement,
public-private partnership, reduction of stigma and discrimination against people
infected and affected by HIV/AIDS and human rights based approach have been
outlined as some of the guiding principles in the development of the strategy. To
enable high level and multi-sectoral commitment in the response to the HIV/AIDS
epidemic in Nepal, a high level National AIDS Council (NAC) chaired by the Prime
Minister was formed. There is a National AIDS Coordination Committee (NACC)

chaired by the Minister of Health which is responsible for reviewing and approving
work plans and budgets, reviewing reports, and guiding implementation of the
national strategy. The NCASC has the authority for technical review and advice on
policy and funding issues and acts as the secretariat to the NACC. The NACC
reports to the NAC. There is also a Steering Committee chaired by the Health
Secretary that meets on a regular basis to review programme activities as well as to
guide and direct programme implementation (NCASC, 2009).
The presence of multiple terms used to describe the effects of care giving may lead
to confusion in synthesizing care giving aspects. Investigators have documented the
negative biopsychosocial effects associated with providing care for a relative or
friend. Understanding the concepts related to care giving experiences and the
relationships among them can enable health workers to better address the needs of
caregivers (Hunt, 2003).
The home based family caregiver burden is due to personal problem of caregivers,
financial limitations, inadequate resources, inadequate knowledge and insufficient
support. The home based care outcomes to PLWA can be categorized in positive,
negative and neutral terms. Hunt (2003) mentioned that in positive terms it’s called
caregiver esteem, caregiver satisfaction and uplifts of caregiver. The negative
consequences include caregiver burden, caregiver stress, and caregiver strain. The
neutral term used are caregiver appraisal, caregiver well being and quality of life.
Most of the caregiver outcomes have shown the negative effects i.e. called caregiver
burden. The caregiver burden is both predictor and outcome. The perceived burdens
are related to emotional, physical, social life and financial status of care providers.
The concept of family need not be limited to ties of blood, marriage, sexual
partnership or adaptation. This can be extended to individuals whose bonds are based
on trust, mutual support and a common density may be regarded as a family. All
families, traditional or non-traditional, can help stop AIDS spreading by ensuring
that their members understand and follow safer behaviour and if one of their
members does fall ill with AIDS, families are often the best sources of
compassionate care and support (Hunt, 2003).

Most of the HIV and AIDS home care is carried out by family members who have no
contact with professional help and suffer through lack of support. This means that
infected people are inadequately looked after despite the best efforts of their carers
and families who face economic, psychological and social difficulties. Studies have
shown that the most effective home based care programme involve ongoing support
for their workers, support from local communities and integration within existing
health systems. However, many home based care programme had, inadequate help
from home based care organizations, limited resources, risks faced by carers and
economic burden on the family (Opiyo et al., 2008).
In developing countries, families are the primary caregivers to sick members. There
is clear evidence of the important role that the family plays in providing support and
care for people living with HIV/AIDS. However, not all-family response is positive.
Infected members of the family can find themselves stigmatized and discriminated
within the home.
This study explores the various aspects of home-based care to the PLWA and the
effects on the caregivers and the family residing in eastern rural Nepal. Based upon
the finding of the aspects analysis of this study, the available literature, WHO and
NCASC guidelines the education intervention programme was implemented and the
effectiveness was evaluated.
1.2 General and Specific Objectives
1.2.1 General Objective
The overall objective of this study is to examine the aspects of home-based care to
the people living with AIDS and their effects on caregiver and family in Eastern
Rural Nepal
1.2.2 Specific Objectives
The specific objectives of this study are:
a. To measure the home-based care aspects to the people living with
AIDS and their caregivers.

b. To find out the relationships between socio-demographic variables and
home-based care aspects of people living with AIDS and their
caregivers.
c. To find out the level of burden on caregivers and their family.
d. To evaluate the effects of education intervention programme on home-
based care to the PLWA among the caregivers.
1.3 Hypotheses
Ho1: There is no association between socio-demographic variables of
caregiver with home-based care aspects, caregiver burden and family
burden.
Ho2: There is no relationship between caregiver burden and family burden.
Ho3: There is no significant difference between before and after education
intervention programme in relation to knowledge and practice of care
of people living with AIDS among the caregivers along with PLWA.
1.4 Operational Definitions
1.4.1 People living with AIDS (PLWA)
The diagnosed and registered AIDS clients at ART centres, getting anti-retroviral
therapy and residing in eastern region of rural Nepal are called people living with
AIDS.
1.4.2 Home Based Care
The care provided to the PLWA by the caregiver at their home is called home based
care. It includes the physical, psychological, social and spiritual care to the PLWA. It
also includes the provision of arrangement of resources and support to the PLWA at
the family level.
1.4.3 Eastern Rural Nepal
All the village development committee (VDC) of eastern region of Nepal is included
in eastern rural Nepal.

1.4.4 Aspects Analysis
It includes the analysis of home based care provided to the people living with AIDS
by the caregivers.
1.4.5 Home-Based Care Aspects
Home-based care aspects includes the knowledge about HIV/AIDS, service provided
to the PLWA, support received from NOGs/INGOs, assessment of health of PLWA,
management of physical health problems, problems faced by caregivers, level of
preparation to provide the care to PLWA, needs of caregivers for effective home
based care to the people living with AIDS provided by the caregivers at family level.
1.4.6 Effects on the Family
Effects on the family include the personal problems of caregivers, financial
limitations, inadequate resources, inadequate knowledge and insufficient support. It
also includes the stigma and discrimination along with burnout syndrome. Effects on
family were assessed by using family burden assessment scale.
1.4.7 Caregiver
It includes mainly the primary caregiver to the PLWA in the family who provides
most of the care to the PLWA.
1.4.8 Family
The concept of family in this study is not limited to ties by blood, marriage, sexual
partnership or adaptation. Any group whose bonds are based on trust, mutual support
and a common density is regarded as a family.
1.5 Variables of the study
1.5.1 Independent variables
a. Socio-demographic characteristics of PLWA and their caregivers: sex,
age, religion, caste, education, marital status, occupation and health
status.
b. Education intervention programme on home-based care

c. Other related co-variables (home-based care aspects): knowledge
about HIV/AIDS, service provided to PLWA, support received form
NGOs/INGOs, assessment of health status of PLWA, management of
physical health problems, problems faced by caregivers, level of
preparation of caregivers and need of caregiver.
1.5.2 Dependent Variables
a. Effects on caregiver: The effect on caregivers was measured by using
15 items five points caregiver burden assessment tool based on the
scale developed by Robinson (1983), where Cronbach’s alpha is 0.86.
b. Effects on family: The effects on family was measured by using 20
items five points family burden assessment tool, based on the scale
developed by Kipp et al. (2006), where Cronbach’s alpha is 0.87.
c. Knowledge and practice on home based care.
1.6 Rationale of the Study
The demands and outcomes on the family caregivers of PLWA are enormous and
need to be addressed in terms of public health policy, health economics and patient
care perspectives. The care for PLWA is provided through general and infectious
disease hospitals in Nepal. The increasing demand of family caregivers involves the
patient care. The studies have shown that AIDS clients would rather stay with their
families at home than in a hospital. The necessary emphasis on family care giving is
even more significant because the family member is given the responsibility of the
care of people living with AIDS.
There has been a growing interest over the past 20 years in exploring the care giving
experience. Over the course of the AIDS epidemic, family caregivers have provided
an essential source of care to PLWA. The assessment of burden has become a
challenging task for most researchers. The literature suggests that the characteristics
of the caregiver, the characteristics of the patient, stigma and the nature of the care
giving relationship are the determinants of caregiver burden (Vithayachockitikhum,
2006).

An extensive body of literature underscore that providing care to an ill family
member is a stressful experiences for the entire family. Most of the care giving
research has disproportionately focused on negative caregiver outcomes. Studying
this aspect is of significance because social support has shown to be positively
related to good health. It is associated with better health outcomes, better coping and
less negative effects of stress which is particularly relevant in the context of
HIV/AIDS.
The PLWA has a lot of physical health problems that needs care. The problems that
need care are: Fever, Headache, Weight Loss, Anorexia, Oral thrush, Cough,
Diarrhoea, Skin infection and Tuberculosis. Along with physical health problems
PLWA experience emotional and psychological problems to a great extent. The
families experienced enormous burdens related to financial limitations, inadequate
resources, and insufficient support (Fitting & Robins, 1985).
AIDS in some African countries is already affecting sizeable populations and has
important implications for development. At the most basic level, it increases
morbidity (illness) and mortality (death), particularly among young adult
populations; decreases life expectancy, and increases infant and child mortality rates.
The full impact is not clear, as nowhere has the epidemic run its course.
HIV/AIDS is of concern in the rural development sector. Evidence shows that in
many countries there is currently a lower rate of HIV infection in rural areas. For
example in Zambia in 1993, prevalence rates among women ranged from 33.3% in
urban areas to 13.2% in rural (Agbonivtor, 2009). However, in other countries, for
example Swaziland and South Africa, there is little difference in the infection rates
between the rural and urban areas. The key determinant of the differential levels of
infection is the amount of movement and interchange between urban and rural areas.
Ironically, successful rural development will facilitate this process. It is possible that,
even in rural areas with current low levels of HIV infection, these may climb, and in
time approach those of the urban areas. Even if there is a differential between rural
and urban areas, the rural sector will not be immune to the impact of the epidemic.

The area of this study is eastern rural Nepal, where there is HIV/AIDS endemic
especially in Dharan, Biratnagar, Itahari, Kakarbhita, Rajbiraj, Lahan and Damak.
The eastern region of Nepal is very prone to HIV/AIDS because there are a lot of IV
drug users in Dharan. Lauhure is the main occupation of majority of people residing
in Dharan, Ithari, Damak, and eastern hilly districts. Eastern border of Nepal,
Kakarbhita, is very near to Indian city of New Jalpaigudi, Siliguri and Darjeeling.
Southern boarder of Nepal is also open and rural people go to India, especially
Punjab, Delhi, Mumbai and other major cities frequently for earning and labour
work. In eastern Nepal, especially Jhapa and Morang there are major issues of
Bhutanese refuges, where the problem of HIV/AIDS is also prevalent. These are the
common reasons for increasing HIV infection in eastern Nepal.
In eastern region of Nepal the main towns are Dharan, Biratnager, Itahari, Damak,
Inaruwa, Rajbiraj, Bhadrapur, and Kakarbhita, where the rate of migration of people
from urban to rural and rural to urban is very high. Many people residing in eastern
Nepal are also involved in foreign labour, especially in the Gulf countries, that leads
to increase in the number of HIV infection related to high risk sexual behaviour.
The NCASC data show that eastern region of Nepal is the area most prone to
HIV/AIDS. In eastern region of Nepal there are four ART centers situated at Dharan,
Rajbiraj, Biratnagar and Bhadrapur. Some other centres are going to be established
in the near future as per plan of NCASC. The investigator is interested to conduct
this study in eastern region of Nepal, in order to explore new facts that can be
practical and useful in policy implications, and problem solving.
Home based care to the PLWA is not the alternative service of hospital care and
professional health care providers’ services, it is a complementary service. It
includes the physical, social, psychological and religious needs of the PLWA. The
main aim of home based care is to develop insight and positive thinking among the
PLWA and their care provider family members.
Home based care programme helps to regulate the services of PLWA in the family
and community; Increases knowledge regarding prevention, treatment, and care of

PLWA; Makes capable to obtain long term services for PLWA; Boost-up Care
Provider for long term quality care; Able to manage the symptoms, Prevent and care
the problems related to opportunistic infection; Decrease the negative feelings and
stigma related to HIV/AIDS in the family and society; Make patient capable to obtain
available services in health care institutions; Provide quality services to PLWA
easily and Help utilize local resources of the community properly to care the PLWA.
Advantages of home-based care are:
• It frees up the number of hospital beds available for those who are very
ill or suffering as a result of other diseases and accidents.
• It involves the community in directly taking responsibility for
HIV/AIDS.
• It allows people who are ill to spend their days in familiar surroundings
and stops them from being isolated and lonely.
• It gives families access to support services as well as emotional
support.
• It promotes a holistic approach to care and does not only focus on
narrow health needs.
• It is pro-active and helps keep people healthy for longer.
• It involves the patients in their own care and gives them more rights to
decide about what should be done.
• Many of the common diseases or conditions can easily be managed at
home with the right training.
• It takes a big burden off the family, especially children.
• Home-based care focuses on the individual patient and her/his needs.
• It avoids unnecessary referrals or admissions to hospitals and
institutions.
• It helps to co-ordinate different services in the community and get
them all to people who need it through one volunteer.
• It helps to collect data and to record information about what is
happening in the community.
• It makes sure that there is consistency of services and that everyone
gets access to things like grants, projects and food parcels.

Ninety percent of people that are ill are cared for by their relatives. It is important
that the relatives are properly equipped to do this work and get the emotional support
they need. Where relatives are unwilling to look after someone, the home-based care
project will have to give more regular support and make sure that the person is not
neglected.
Keeping all these facts in mind the investigator has decided to conduct the study on,
“Home Based Care to the People Living with AIDS in Eastern Rural Nepal: An
Aspects Analysis”.
1.7 Conceptual Framework of the Study
People with HIV/AIDS can live healthy lives for longer if proper care and support is
provided. People who are ill with AIDS need much more care than our hospitals and
clinics can provide. It is vital that health workers work with communities and
families to make sure that people who are ill at home get proper care. This is where
the idea of home-based care comes from. It is very important that the more direct
support and care roles are played below a hospital level so that the hospital can do
the things that it does best for diagnosis, treatment and medication.
Family members are most often the direct caregivers for people who are ill. Families
do the basic washing, cleaning and feeding and it is important they get both training
and emotional support. Where the patient does not have a direct caregiver, the
volunteers will have to do this work. If family members are available to provide
some care, they should be trained by the volunteers who can also give some
emotional support. Family members over 12 can be trained in basic hygiene, dealing
with simple infections, basic nutrition, bed baths dealing with blood and body fluids.
They should learn how to protect themselves from infection, For example, covering
your hands with a plastic bag when you deal with blood can save your life. The
volunteers should give these families access to information, make referrals to other
service providers and distribute food parcels and so on. They can also help people
who are ill to get medication from the clinics through their links with the health
workers.

People with HIV/AIDS can look after themselves while they are able to. They should
be encouraged to keep themselves as healthy as possible and should be targeted for
specific programs such as: Wellness programs to keep as healthy as possible and to
strengthen immune systems, Nutrition programs, Training in basic hygiene and
treatment for common infections like skin infections. They themselves should be
trained in basic health care and where possible should be drawn into support and
other activity groups. It is very important for home-based care projects to target all
people who are ill and being looked after at home.
The review explores the specific issues that cluster around the provision of care in
the context of the global HIV/AIDS pandemic. The concept of the ‘care economy’
provides a useful lens through which to view the HIV/AIDS pandemic, as it
illuminates the increased labour, time and other demands placed upon households
and shows that the assumptions on which norms and expectations of care provision
are based are increasingly being challenged. While some studies are being made in
policy and programme around HIV and AIDS related care, much more needs to be
known and done to enable individuals, families and households to survive in a world
shaken by AIDS. A strategy of simply downloading responsibility for care into
women, families and communities can no longer be a viable, appropriate or
sustainable response and this is no less true in this current era of expanding treatment
options for people living with HIV and AIDS.
Home based care (HBC) is one of the models of care that deliver health care and
other support to PLWHA and their families. The World Health Organization (WHO)
defines HBC as the provision of services in support the HIV/AIDS care process that
take place in the home of the HIV-infected person (WHO, 1989). It includes
physical, psychosocial, palliative, and spiritual activities (WHO, 2002) such as
clinical monitoring and management of opportunistic infections (prophylaxis and
treatment), counseling, food supplementation/nutrition, and clean water. Services are
provided by a mix of staff that usually includes community volunteers, community
health workers, nurses, doctors, and other professionals. Other models of care that
deliver health and support services to PLWHA and their families may require the

PLWHA to travel to a community center to obtain food and counseling, and to a
health center for palliative care.
Home-based caregivers were particularly valued for home visits, because they
provided much needed material support. They counselled PLWA and their carers,
provided palliative care, cooked and cleaned the house. They provided a much-
needed respite for respondents who felt emotionally strengthened by their visits. A
bonus for respondents was an informed home-based caregiver. NGOs were valued
by respondents because they met needs that the health services could not. In contrast,
some caregivers felt that home-based carers ignored them and only gave support to
the PLWA.
A conceptual framework is an integrated model of care designed to meet the health
needs of the patients, families and communities. According to Stanhope and
Lancaster (2004), it is important to have a conceptual framework in research because
it gives a basis for making decisions and establishing priorities. It also gives the
researcher an opportunity to examine programme systematically for deficiencies to
deal with potential problems. Lastly, conceptual framework serves to explain why
things are done in a particular way. The conceptual perspective which has been
described in this chapter to guide the present study is quality of care which can
determine the quality of life for PLWHA. Through the thick descriptions of the
experiences from the participants in this study, it was possible to determine the
deficiencies in the implementation of HBC to PLWA in Eastern Rural Nepal.
Home based care is not only an important mechanism for extending the continuum
of care by providing at home the basic nursing care and treatment necessary for
many of the afflictions that strike PLWHAs. It also promotes community awareness
of HIV/AIDS, provides an example to motivate behaviour change and decrease the
stigma attached to the disease, and enables PLWHAs to maintain their family and
community roles. Home-based care is cost effective as well. It frees up hospital beds
and medical personnel for the acutely ill and thus relieves the burden on the health
care system (UNAIDS, 2002).

The model for HIV/AIDS care continuum developed and used by WHO (2004) is
depicted in figure 1.1.
Figure 1.1. Conceptual Framework based on WHO HIV/AIDS Care
continuum model
Source: WHO, 2004
1.8 Chapter Outline
This dissertation is written in seven chapters. The first chapter is introduction, which
contains background of the study, objectives, rationale of the study, research
question, null hypothesis, operational definitions, variables, limitations of the study
and conceptual framework.
In chapter two, review of literature is presented in fourteen sub-headings. In chapter
three, there is description of methodology, described under the various sub-headings
including research design, sampling technique, validity of tool, reliability of the tool,
data collection procedure, education intervention programme, ethical issues of the
Social Support
Services
Peer Support and
Voluntary
Services
Hospitals, HIV Clinics,
Specialists and
Specialized care
Facilities: Direct Care,
Infection Control,
Terminal Care
Homes, Community
& Hospices
Services
Health Centre,
Dispensaries,
Traditional Care:
Governmental & Non-
governmental
HIV Voluntary
Counselling and
Testing (VCT)
PLWA &
their
Caregivers
Care Seeking/Providing/Referral

research, methods of data analysis and limitations of the study. The chapter four is
analysis and interpretation of data, described under main four sub-headings including
data obtained by interviewing caregivers, results of case study obtained from people
living with AIDS, results of focus group discussion and the results of key informant
interview. In chapter five, there is description of results of education intervention
programme, described under various sub-headings.
Chapter six describes the summary of the study and discussion. Chapter seven
includes conclusion and recommendations. The relevant documents and materials are
included in appendices. Some relevant photographs are depicted in the list of the
plates heading. At the end of the dissertation list of all the references cited are
included.

CHAPTER II
REVIEW OF THE LITRATURE
In accordance with the subject for study, an extensive review of the relevant
literature was carried out through the published national as well as international text
books, periodicals, journals on medicine, nursing and public health. Surfing of the
internet and Medline was carried out to collect the latest information pertaining to
the subject. The literatures that were reviewed related to the subject are presented
under the following heads:
2.1 Overview of HIV/AIDS Situation
2.2 Pathogenesis of HIV/AIDS
2.3 Epidemiology of HIV/AIDS
2.4 Treatment, Care and Support of People Living with AIDS
2.5 Stigma and Discrimination Related to HIV/AIDS
2.6 Conflict and HIV/AIDS
2.7 Need of the People Living with AIDS
2.8 Home-Based Care Services and Costs
2.9 Expanding Care Continuum for People Living with AIDS
2.10 HIV/AIDS and Rural Development
2.11 Effects of HIV/AIDS on Caregiver and Family
2.12 Ways to Improve the Status of Home Based Care
2.13 Recent Data and Information Related to HIV/AIDS and HBC
2.14 Summary of Literature Review
2.1 Overview of HIV/AIDS Situation
Human Immunodeficiency Virus (HIV) infects humans. A person with HIV is
infected for life and can infect others. The virus attacks the immune system and
slowly weakens the body’s defense against diseases. An HIV-infected person can

look and feel well for a long time without developing AIDS (Armirkhanian et al.,
2003).
Acquired immunodeficiency syndrome (AIDS) is a disabling and deadly disease
caused by HIV. “Acquired” means something not inherent in the patient’s body but
transmitted from others; “immunodeficiency” refers to the weakened ability of the
body’s immune system that helps it ward off infections and diseases; and
“syndrome” is the group of signs and symptoms associated with the disease. AIDS
occurs as a collection of infections called opportunistic infections that are usually
severe, such as pneumonia or tuberculosis, manifest more often during the late stages
of HIV infection. An HIV infected person may not develop AIDS until 8 to 10 years
after being infected (Beine, 2003).
2.1.1 Global Picture
HIV/AIDS is a fourth biggest killer worldwide. Estimated 40.3 million are living
with HIV; about one-third are aged 15-24 years. Most people don’t know they are
infected. Young women are especially vulnerable. More than 95% are in low or
middle-income countries. In 2005 about 4.9 million new HIV infections was added
and 3.1 million deaths occurred due to AIDS. About 14,000 new HIV infections a
day in 2005 and more than 95% are in low and middle-income countries (WHO,
2006).
2.1.2 Asian Situation
There is high HIV prevalence in India, Myanmar, Cambodia, Vietnam and Thailand.
There is Low HIV prevalence among women in antenatal clinics but relatively high
among IVDUs in Nepal, China and Malaysia. There is low HIV prevalence in
Bangladesh, Bhutan, Indonesia, Maldives and Srilanka (NCASC, 2006).
2.1.3 South-East Asia Region
Although the HIV prevalence rate is still low in South East Asia, it is one of the most
rapidly growing epidemics globally. Because of the largest population base and
presence of several factors that enhance the spread of HIV, including poverty, gender

inequality and social stigma, the South-East Asia Region is likely to increasingly
suffer the brunt of the epidemic (NCASC, 2006).
As per report (WHO SERO, 2006) there is an estimated 6.7 million people are living
with HIV/AIDS in South-East Asia in 2005; it is the second highest number of cases
in the world after sub-Saharan Africa. It is estimated that less than 10 percent of
infected persons are aware of their HIV status. India, with 5.1 million HIV/AIDS
cases, is second only to South Africa in terms of the numbers. Six states in the
country, namely, Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland and
Tamil Nadu bear the highest burden.
Report (WHO, 2006) also mentioned, the majority of HIV infections in the Region
occur through unprotected sex between men and women. Throughout the Region,
injected drug use is adding to the rapid spread of the epidemic. Around half of
injection drug users have already acquired the infection in Nepal, Myanmar,
Thailand, Indonesia, Manipur and Nagaland states in India. An estimated 9,50,000
persons living with HIV/AIDS in the Region urgently require antiretroviral
treatment. The number of people on treatment was doubled during 2004 and nearly
163,000 persons are receiving antiretroviral treatment at the end of December 2005
(WHO SERO, 2006).
In South-East Asia Region, the HIV epidemic remains highly dynamic, posing
tremendous challenges to the public health system. An estimated 3.5 million people
are living with HIV/AIDS in the Region. Women account for 33% of total people
living with HIV. In 2008, about 2,00,000 people were newly infected with HIV and
2,30,000 died of AIDS related illnesses (WHO, 2006). The overall HIV prevalence
in the region is slowly decreasing. However, country wise differences exist. In the
parts of India, Myanmar, Nepal, Sri Lanka and Thailand, HIV prevalence is
decreasing or stabilizing although pockets of high transmission remain. HIV
infection is rapidly increasing in Indonesia.
The majority of the HIV infections are transmitted sexually. Injecting drug use is an
important route of HIV transmission in several countries. In Thailand, a third of all

new infections are among low-risk women from their HIV-infected regular male
partners or husbands.
Overall, HIV prevalence among the adult population is low (0.3%) in the Region, but
sex workers and their clients, men who have sex with men and transgender
populations as well as injecting drug users are disproportionately affected by HIV. In
some areas (Thailand and south India), HIV prevalence has decreased among female
sex workers; however, there is evidence of continuing high transmission among
injecting drug users and increasing HIV infection among men who have sex with
men in large cities (WHO, 2006).
Consistent condom use with paying partners is reaching optimal levels among sex
workers; however, men who have sex with men, transgender populations and
injecting drug users have low rates of condom use. Men who have sex with men
have multiple partners and a large proportion of them are married to women.
2.1.4 Situation in Nepal
There is an estimated 0.5% national prevalence, concentrated epidemic, estimated
70, 256 infected, about 12.0% of these have been tested, about 3000 deaths per year.
In Kathmandu HIV prevalence among IV drug users (IDU) is 51.1% and among
female sex workers (FSW) is 4.0%. Estimates of prevalence of HIV-positive among
labour migrants returning from India range from 4.0 to 10.0% (WHO, 2006).
In Nepal the estimated number of PLWHA at the end of 2005 was 61,000. HIV
prevalence in 2005 was 0.5%, estimated number of AIDS cases is 7,800, the number
of children (0-18) orphaned by HIV/AIDS is 18,000 and receiving Anti Retroviral
Treatment (ART) till December 2005 was 210. HIV infection has taken root in South
Asia and poses a threat to development and poverty alleviation efforts in the region.
HIV infection is fuelled by risk behaviour, extensive commercial sex, low condom
use and access, injecting drug use, population movements (cross-border/rural-urban
migration), and trafficking (WHO/UNAIDS, 2006).
Social and economic vulnerabilities, including poverty and illiteracy, highlight the
need to act effectively and aggressively to reduce its spread. South Asia has about

4.2 million of the world’s 36 million people living with HIV/AIDS. While overall
prevalence rates remain relatively low, the region’s large populations mean that a
rise of a mere 0.1percent in the prevalence rate in India, for example, would increase
the national total of adults living with HIV by about half a million persons (Singh et
al., 2006).
The current situation of HIV in Nepal is different from when the first case was
diagnosed in 1988. There are gaps and challenges to be addressed in the fight against
HIV and AIDS. Nepal is low prevalence country for HIV and AIDS. However, some
of the groups show evidence of a concentrated HIV epidemic e.g. sex workers
(19.5%), migrant population (4.0-10.0%), and intravenous drug users (IVDU's) both
in rural and urban areas (68.0%). Now, different stakeholders have come forward to
address HIV and AIDS issues (NCASC, 2006).
A significant percentage (60.0%) of HIV positive patients belongs to lower socio-
economic class and many of them were mobile workers and contracted their illness
while working in Indian metropolis in the past (MOPH, 1996).
2.2 Pathogenesis of HIV/AIDS
2.2.1 Definition of HIV/AIDS
HIV (Human Immunodeficiency Virus) is a virus that causes AIDS (Acquired
Immunodeficiency Syndrome), a health condition in which a person is affected by a
series of diseases because of poor immunity. HIV by itself is not an illness and does
not instantly lead to AIDS. There is no way of knowing whether just looking at them
infects someone. An HIV-infected person can lead a healthy life for several years or
she can instantly pass the virus to others.
AIDS is a health condition where the body’s immune system is gradually destroyed
following an HIV infection. Over a period of time, the immune system weakens and
the body loses its natural ability to fight against diseases. Eventually the infected
person may lose weight and become ill with diseases like persistent severe diarrhoea,
fever, skin diseases, pneumonia, TB or tumors. At this stage, he or she has now
developed AIDS.

To reduce the transmission of HIV/AIDS, a number of activities
have been undertaken over the last decade. National Centre of
AIDS and STD Control (NCASC) was established in 1993. NCASC is
a coordinating body under the MOH, which looks after the AIDS
and STD preventive activities in the country (NCASC, 2003).
2.2.2 Causes and Transmission of HIV/AIDS
The predominant mode of transmission of HIV in Nepal is heterosexual contact with
commercial sex workers. HIV prevalence rates are about 4.0% among sex workers in
the Terai regions of Nepal and about 1.5% in their clients (which is more than five
times the national average prevalence). In Kathmandu, nearly 17.0% of sex workers
are HIV-positive. There are about 25,000 sex workers in Kathmandu and an
estimated 200,000 Nepalese women working in Indian brothels. About 5,000 to
10,000 Nepalese sex workers are trafficked every year; numbers are likely to
increase as a result of the conflict. One striking estimate is that nearly 70% of sex
workers returning from India are HIV-positive (NCASC, 2003).
More people are travelling and working away from home due to global economy.
Men have more sex with sex workers, contract HIV and return home to their wives,
who contract HIV and pass it along to their infants in uterus or through breast milk
(NCASC, 2006).
Among injecting drug users, estimated to be about 30,000 in Nepal, about 40.0% are
HIV-positive. Needle sharing and risky sexual behaviour are common in this group.
The figures are particularly alarming in Kathmandu, the capital city, where nearly
68% of injecting drug users is HIV-positive. A subtype C virus with restricted
genetic diversity is thought to have caused this epidemic in Kathmandu.
Concomitant hepatitis C infection is a contributing factor to the rapidity and severity
of disease progression in injecting drug users, and 94.0% of users in Kathmandu
have tested positive for hepatitis-C (NCASC, 2003).
Similarly, NCASC also reported, denial and silence regarding HIV are the norms.
People with HIV are stigmatized for many reasons like: HIV is a slow, incurable

disease, resulting in illness and death. HIV is considered a death sentence; People
often do not understand how HIV is spread and are irrationally afraid of acquiring it
from those infected with it.
HIV transmission is often associated with moral violations of social mores
concerning sexual relations, so people with HIV are tainted with the notion of their
having done something “bad.” People tend to stigmatize or blame certain groups for
spreading HIV, for example, sexually promiscuous people or drug users.
Stigma prevents people from speaking about or acknowledging HIV as a major cause
of illness and death. Stigma prevents HIV-infected people from seeking care and
from taking preventive measures. Even when counselling and testing are offered,
people may not want to know if they are infected for fear of being stigmatized; this
fuels the spread of the disease.
In many societies people living with HIV and AIDS are often seen as shameful. In
some societies the infection is associated with minority groups or behaviour, for
example, homosexuality, in some cases HIV/AIDS may be linked to 'perversion' and
those infected will be punished. Also, in some societies HIV/AIDS is seen as the
result of personal irresponsibility. Sometimes, HIV and AIDS are believed to bring
shame upon the family or community and whilst negative responses to HIV/AIDS
unfortunately widely exist, they often feed upon and reinforce dominant ideas of
good and bad with respect to sex and illness, and proper and improper behaviour
(UNAIDS, 2006).
HIV/AIDS is a life-threatening disease. People are scared of contracting HIV. The
disease is associated with behaviours (such as sex between men and injecting drug-
users) that are already stigmatized in many societies. People living with HIV/AIDS
are often thought of as being responsible for becoming infected. Religious or moral
beliefs lead some people to believe that having HIV/AIDS is the result of moral fault
that deserves to be punished (UNAIDS, 2006).
Cultural traditions, beliefs and practices affect people’s understanding of health and
disease and their acceptance of conventional medical treatment. Culture describes

learned behaviour affected by gender, home, religion, ethnic group, language,
community and age group. Culture can create barriers that prevent people, especially
women, from taking precautions. For example, in many cultures, domestic violence
is viewed as a man’s right, which reduces a woman’s control over her environment.
This means she cannot question her husband’s extramarital affairs, cannot negotiate
condom use and cannot refuse to have sex (NCASC, 2006).
Gender roles have a powerful influence on HIV transmission. In many cultures, men
are expected to have many sexual relationships. There is social pressure on them to
do so. This increases their risk of becoming infected. Because women often suffer
economic inequities, they often need to use sexual exchange as a means of survival.
This exposes them to unacceptable risks when they try to negotiate safer sex (for
example, rejection, loss of support, and violence). Poor people lack access to
information needed to understand and prevent HIV/AIDS. Ignorance of the basic
facts makes millions of people worldwide vulnerable to HIV infection. These lower
a person’s inhibitions and impair judgment, which may result in risky behaviour.
Injecting illicit drugs frequently involves the sharing of needles and injection
equipment, increasing the risk of HIV transmission (NCASC, 2006).
Religious organizations play a central role in many communities and are an essential
part of support networks for people living with HIV/AIDS and their carries.
Religious faith often motivates people to provide practical care for people who are
sick. This includes volunteering to care for people with HIV/AIDS. Religious faith
also encourages people to offer emotional and spiritual comfort, which is a type of
counselling. This is especially important when the practical reality is difficult to face
because there is little or no access to treatment and the burden of grief in the
community is very large (Olley et al., 2006).
2.2.3 Pathology of HIV/AIDS
Most people don't feel any difference after they are infected with HIV. In fact,
infected people often do not experience symptoms for years. Some people develop
flu-like symptoms a few days to a few weeks after being infected, but these
symptoms usually go away after some time.

An HIV-positive person will eventually begin to feel sick. The person might begin to
have swollen lymph nodes, weight loss, intermittent fever, infections in the mouth,
diarrhea and feel tired for no reason all of the time. Eventually, the virus can infect
all the body's organs, including the brain, making it hard for the person to think and
remember things (Armirkhanian et al., 2003).
When a person's T cell count gets very low, the immune system is so weak that many
different diseases and infections by other germs can develop. These can also be life
threatening. For example, people with AIDS often develop pneumonia, which causes
coughing and breathing problems. Other infections can affect the eyes, the organs of
the digestive system, the kidneys, the lungs, and the brain. Some people develop rare
verities of cancers of the skin or immune system (Beine, 2003).
Most of the children who have HIV got it because their mothers were infected and
passed the virus to them before they were born. Babies born with HIV infection may
not show any symptoms at first, but the progression of AIDS is often faster in babies
than in adults. Doctors need to watch them closely. Kids who have HIV or AIDS
learn more slowly than healthy kids and tend to delay walking and talking.
HIV-positive people should know the difference between HIV and AIDS. They
should understand how people become infected. Some HIV infected people stay
healthy for months or years, but can still transmit the virus to others. Some get flu-
like symptoms such as fever, headache, sore muscles and joints, stomachache,
swollen lymph glands or skin rash. With any unexplained symptoms or possible
exposure to HIV, testing should be considered. HIV testing looks for HIV antibodies
in the blood, saliva or urine. If tested too early, some HIV infected people may not
obtain positive results. For accurate results, testing should be done two to six months
after exposure. A positive test result does not mean that a person has AIDS.
Depending on HIV symptoms and test results (viral load and T-cell count), a person
may need to take ARV medication (Underwood, 2006).
2.3 Epidemiology of HIV/AIDS

World AIDS Day has a special place in the history of the AIDS pandemic. Since
1988, 1st
December has been a day bringing messages of compassion, hope,
solidarity and understanding about AIDS to every country in the world. World AIDS
Day emerged from the call by the World Summit of Ministers of Health on
Programme for AIDS Prevention in January 1988 to open channels of
communication, strengthen the exchange of information and experience, and forge a
spirit of social tolerance. Since then, World AIDS Day has received the support of
the World Health Assembly, the United Nations system, and governments, churches,
communities and individuals around the world. Each year, it is the only international
day of coordinated action against AIDS (UNAIDS, 2002).
“Stop AIDS: Keep the Promise” is the theme of World AIDS Day 2005. "Keep the
Promise" is an appeal to governments and policy makers to ensure that they meet the
targets they have agreed to in the fight against HIV and AIDS.
Awareness raising activities take place in almost all the countries around the world,
often with mass participation; AIDS organizations mobilize and high level
government officials speak out. There is broad, non-restrictive participation. Today,
World AIDS Day has achieved such a level of recognition worldwide that it is set to
remain a primary vehicle for reinforcing AIDS awareness at the international and
national level, regardless of the theme or level of United Nations participation.
The estimated number of HIV cases is important information for formulating a
national strategy on HIV/AIDS and for programme designing, monitoring and
evaluation purposes. The National Centre for AIDS and STD Control (NCASC),
Ministry of Health and Population (MOHP) of Nepal, with the technical support of
Family Health International (FHI)/Nepal and United States Agency for International
Development (USAID), estimated the number of adult HIV cases in Nepal for the
first time in 2003. This estimation exercise was repeated again for the year 2005 by
NCASC with technical assistance from FHI/Nepal and USAID. As before, the
estimates are derived for four epidemic regions and combined to derive national
estimates (NCASC, 2006).

2.3.1 The Current HIV Epidemic in Nepal
Most cases of HIV infection in Nepal are HIV-1, although HIV-2 was also recently
reported. As of February 2005, the National Centre for AIDS and STD Control in
Nepal reported that there were 4,755 HIV-positive people and 856 confirmed cases
of AIDS in Nepal. However, because of the poor surveillance systems and the lack
of access to quality voluntary counselling and testing services coupled with
antiretroviral treatment, these prevalence figures are likely to be a gross under-
estimate (NCASC, 2005). As per published data (NCASC, 2010) till 16th
July 2010
there were 16,138 PLWHA in Nepal, and among these 10497 were males and 5641
were females.
As per Nepal National AIDS Spending Report (NCASC, 2007), there were
assessments nearly 70,000 PLWHA are in Nepal. As of December 2008, total 2,387
HIV cases have been reported; almost 70% come from the young, productive and
working age group, 20-39 years old. Male to female ratio is 2.1:1. Almost 39 % of
disease burden is shared by labour migrants and almost 27% borne by urban and
rural women who have low-risk behaviours, with only 1.5% ever having had
extramarital sexual relations. Three other most risk groups are IVDUs, MSM and
FSW that collectively bear almost 12 % of total disease burden.
UNGASS Country Progress Report (UNGASS, 2008), shows that 42.0% of all HIV
cases in Nepal are among seasonal labour migrants, 15.0% among clients’ of sex
workers and 26% are wives or partners of HIV-positive men. Now, over 1240 people
are receiving free ART from 16 sites across the country.
2.3.2 Reasons for Fuelling the Epidemic
Several factors contribute to the propagation of HIV in times of conflict. While
accurate numbers are hard to come by, the recent conflict may have contributed to
the propagation of HIV/AIDS by fuelling displacement. As the insurgency drags on,
seasonal and long-term migration of labourers to neighbouring countries, such as
India, becomes critical to the economic survival of many households. Young men
have left the country for fear of execution and migrated to the high-prevalence areas

in India. UNAIDS estimates at least 10% of the 2 million to 3 million Nepalese
migrant workers in India are HIV positive. These are now infecting spouses and
others in many parts of the country. By pushing rural residents from war-torn areas
to the capital, Kathmandu, the conflict may have helped spread HIV/AIDS (NCASC,
2003).
Behavioural and sero-prevalence data indicate the high potential for a generalized
epidemic in Nepal. In the absence of effective interventions, even a "low to moderate
growth scenario" would make AIDS the leading cause of death in the 15-49 year old
population over the coming years. For Nepal, this would mean that around 100000-
200000 young adults will become infected and that overall 10,000-15,000 annual
AIDS cases and deaths due to related illnesses may be expected (NCASC, 2009).
The HIV/AIDS pandemic is a continuing threat to Nepal. Although the country has a
low prevalence rate in the general population, it has already entered the stage of a
'concentrated epidemic' with prevalence rates exceeding 5% within certain
populations, such as intravenous drug users and sex workers. UNAIDS estimates that
almost 60,000 adults and children were living with HIV/AIDS in Nepal at the end of
2002. In that year, there were an estimated 2,958 deaths due to HIV/AIDS. To date,
more than 13,000 children have been orphaned in Nepal as a result of the disease.
This spread of HIV/AIDS is closely related to the high levels of poverty, low status
of women, girl trafficking, forced prostitution, unsafe sexual practices and mobility
of migrant workers (Underwood, 2006).
The heterosexual contact has been incriminated as the predominant mode of
transmission of HIV. Risk behaviour is widespread among female sex workers, their
clients, injecting drug users, labour migrants and youth. Increasing level of sexually
transmitted infections (STIs) has been reported over the last few years. Social stigma
and discriminations make it difficult for the people living with HIV/AIDS and high-
risk groups to practice safer sex, undergo testing and seek treatment and care if
infected. HIV/AIDS would have the impact of increasing poverty, negative impact
on socioeconomic development and the loss of productive life. The risk populations
and HIV/AIDS prevalence have been found sharply increasing after mid 1990s. The

prevalence rate among risk group populations is high in injecting drug users (IDUs)
and female sex workers (FSWs). The increasing trend of the infection certainly has
given pressure to focus on the use of comprehensive targeted intervention
programme in risk group sub-populations (Joshi et al., 2004).
Estimating the number of IDU’s in Nepal is a difficult task because of the lack of
credible data. Estimates released in the 1990s ranged from 2500 to 4000 nationwide,
2000 of which were said to be present in the Kathmandu valley. Later in the same
decade, higher estimations of IDUs were recorded across several towns. For
example, the estimated number of IDUs in Kathmandu valley climbed to a range of
15,000 to 20,000. In 2001, the National Centre for STD and AIDS Prevention
estimated the total number of IDUs in Nepal to be between 40,000 and 50,000
(NCASC, 2005).
An HIV Sentinel Surveillance (HSS) among antenatal clinic (ANC) attendees has yet
to be carried out, but should provide valuable data for the group identified as women
at “low-risk.” The HSS on STI patients conducted during the first generation of the
surveillance system was limited due to several reasons. HSS/STI protocol for one
was not uniformly implemented in all sites, nor during the first few rounds and HSS
conducted during the initial phases included several high-risk groups, but only later
focused on STI patients. The number of sentinel sites was also reduced from seven to
six (NCASC, 2005).
The sentinel surveillance for HIV infection was carried out in five urban areas of
Nepal. From a total of 1850 selected sentinel group members coming for STD
treatment, 7 were found to be HIV-positive. A moderate HIV prevalence scenario for
the year 1993 prepared by the World Bank gives an estimated 10,000 HIV positive
cases for the sexually active population of Nepal. A total of 341 HIV positive cases
have been reported to the National Centre for AIDS and STD Control until now,
among which are a total of 51 AIDS cases. The majority of those affected are
commercial sex workers (CSW) and their clients, with a peak in the age group 20 to
29 years.

By mid 1990s, Nepal has entered the 'concentrated epidemic' stage with consistent
HIV prevalence in Female Sex Workers (FSWs), Injecting Drug Users (IDUs) and
migrants. There were around 60,018 people living with HIV/AIDS and 2,598 AIDS
related deaths by 2002. The HIV prevalence is estimated around 0.5 percent in the
general adult population. There is a high potential for and increased spread of HIV
from high-risk groups to the general population (Joshi et al., 2004).
HIV infection has taken root in South Asia and poses a threat to development and
poverty alleviation efforts in the region. HIV infection is fuelled by risk behaviour,
extensive commercial sex, low condom use and access, injecting drug use,
population movements (cross-border/rural-urban migration), and trafficking (Hunt,
2003).
The WHO SERO (2006) HIV/AIDS Report reported that South Asia is very prone to
HIV/AIDS. The details are depicted in table 2.1.
Table 2.1
HIV Burden and Access to Antiretroviral Treatment in SEAR Countries
Country
Estimated
number of
PLWHA by the
end of 2005 *
HIV
prevalence
in 2005
Estimated
number of
AIDS cases
Estimated number of people
receiving ART in public and private
sectors by
Dec-03 Dec-04 Dec-05
Bangladesh 7,500 <0.2 <1000 5
Bhutan <100 <0.1 5 6
India 5,200,000 0.9 770,000 14,000 28,000 55,000
Indonesia 110,000 0.1 11,500 1,350 2,500 3,300
Maldives <100 <0.1 0
Myanmar 330,000 1.2 46,500 1,200 1,500 3,700
Nepal 61,000 0.5 7,800 75 75 210
Sri Lanka 3,500 0.1 <500 25 25 44
Thailand 570,000 1.4 114,000 20,667 50,752 100,000
Timor Leste n/a <0.1
Total (Rounded) 6.3 million 951,300 37,317 82,862 162,260
Source: WHO, SERO, HIV/AIDS Report, 2006

Figure 2.1. HIV/AIDS Situation in Nepal: A Glance
HIV/AIDS Situation of Nepal
Detection of HIV/AIDS by Sex (1988-2004)
Source: NCASC, DoHS
1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004
0
200
400
600
800
1000
Male
Female
Male 3 0 2 12 39 41 18 71 50 394 166 174 301 264 360 505 942
Female 1 2 3 14 38 40 22 39 85 95 54 48 95 60 107 209 340
Reported and Estimated of HIV/AIDS Cases
Source: NCASC, DoHS
4,593
62,000
Reported Estimation
0
10,000
20,000
30,000
40,000
50,000
60,000
70,000
As of December 2004
Cumulative HIV/AIDS in Different Vulnerable
Groups, As of November 2005
Source: NCASC, DoHS
606
2,994
765
9
1,135
138
Sex
W
orkers
C
lient of Sex
W
orkers
Housew
ives
B
lo
od
or O
rgan
R
eceip
ients
Inje
ctin
g
Drug
U
se
C
hildren
0
500
1,000
1,500
2,000
2,500
3,000
3,500
Source: NCASC, DoHS

0-4 yrs 5-9 yrs 10-14 yrs 15-19 yrs 20-24 yrs 25-29 yrs 30-39 yrs 40-49 yrs 50-above
0
500
1000
1500
2000
2500
HIV/AIDS
66 59 33 358 1114 1426 1991 510 90

Cumulative HIV/AIDS in Nepal by Age Group
November 30, 2005
Source: NCASC, HIV/AIDS Report, 2005

2.3.3 Reasons for Growing Problems of HIV/AIDS in Nepal
Several vulnerability factors exist that can likely worsen the epidemic. These
include: high rate of male migration, prostitution, poverty, low socio-economic
status of women, and illicit drug trafficking. Additionally, a large numbers of young
Nepalese girls are recruited as sex workers to Indian cities, and large number of
young Nepalese males working in India. Thus, in addition to the increasing number
of HIV infections occurring among persons with high HIV-risk behaviours in Nepal
there are also increasing number of Nepalese female sex workers and young male
Nepalese workers who have been infected with HIV in India, and who have or will
be returning to Nepal (NCASC, 2007).
Nepal’s epidemic will continue to grow if immediate and vigorous action is not
taken and will be largely driven by injection drug use and sex work. Major risk
factors for growing epidemic in Nepal, as reported by Singh (1995) are: trafficking
of female sex workers, changing values among young people, high rates of migration
and mobility and low awareness among MSM.
Due to their highly marginalized status in society, female sex workers in Nepal have
limited access to proper information about reproductive health and safe sex practices.
Cultural, social, and economic constraints bar them from negotiating condom use
with their clients or obtaining legal protection and medical services. Almost 60% of
their clients, who are mainly transport workers, members of the police or military,
wage earners, and migrant workers, do not use condoms. While nationally, HIV
prevalence among FSWs is four percent, infection rates among street-based sex
workers in the Kathmandu valley are between 15.0% and 17.0%. Nationally, clients
of FSWs have an estimated HIV prevalence rate of two percent. A major challenge
to HIV control in the country is the trafficking of Nepalese girls and women into
commercial sex work in India, and their return to Nepal. About 50.0% of
Nepal's FSWs previously worked in Mumbai, India, and some 1,00,000 Nepalese
women continue to engage in the practice there (UNGASS, 2008).
Nepal hardly has the resources to fight the disease. The sad part of the story is that
the larger percentage of deaths in future is going to be Nepali women, who account

for nearly 60 percent of Nepal’s labour force in the agricultural sector. In South Asia,
Nepal certainly tops the list of number of returning commercial female sex workers
infected with AIDS in 2008. Of nearly 100,000 back from Mumbai, Delhi, Kolkata,
Bangalore and Madras in the past decade with various HIV-related infections and
full blown AIDS, various I/NGOs and donors have estimated nearly 40 percent have
already died. Nearly half are married to Nepali Men, and the remaining are working
in massage parlours, cabin restaurants, lodges, hotels, dance restaurants, bhattis
(Pubs, drinking spots) and road side restaurants on highways. Sex workers, all of
them female, are nearly 250,000 in India’s major cities and many more infected with
HIV will return to Nepal once they cannot physically cope with infection (Prasai,
2008).
It is well known that Nepal’s poverty based- migrant remittance supported economy
relies heavily on the tourism business to fuel its economic growth. From the rural
areas, nearly 10,000 women are being trafficked to India every year for the past two
decades of which various Indian and Nepali NGOs have estimated that only a 7-11
percent involved themselves in domestic housework, around 8 percent settled down
through marriages and the remaining are directly placed in the commercial sex trade
in Indian cities (Prasai, 2008).
2.4 Treatment, Care and Support of PLWA
Treatment, care and support are critical and essential components of the response to HIV
infection and AIDS-related morbidity in Nepal. These core components of the national
strategy focus on providing standardised quality support services for HIV infected
individuals and their families with the aim of improving their quality of life. This in turn
will be beneficial in the further prevention of HIV and AIDS in the country.
Treatment, care and support efforts are more effective when the programme and
activities are integrated into existing infrastructures both at public and private
sectors. Integrated intervention approach focusing on providing standard quality
support services targeted to HIV infected and affected population with an
aim of improving their quality of life will have direct bearing on the prevention
efforts. Widespread access to antiretroviral treatment could bring millions of people

into health care settings, providing new opportunities for health care workers to
deliver and reinforce HIV prevention messages and interventions. Simultaneous and
aggressive expansion of both HIV prevention and AIDS treatment in a truly
comprehensive approach can halt and begin to reverse the epidemic (Singh et al,
2006).
Providing antiretroviral therapy, prevention and other health services along the
continuum necessary for a comprehensive health-sector response to HIV/AIDS
requires that all levels of the health system are functioning and are working together.
Obtaining greater access to better services requires strengthening human resources
planning and management, drug procurement and supply chain systems, financing
mechanisms, health facility planning, patient tracking, social and political analysis,
and community and private sector involvement.
The validity of UNAIDS/WHO estimates of the burden of HIV/AIDS is rightly
questioned by politicians, scientists, and activists especially since the 2003 estimates
to be released in July 2004, will show substantial drops in the burden of HIV/AIDS
in several countries, and increases in others. However, the estimates are based on an
explicit attempt to meet criteria we believe should guide the generation of
international morbidity and mortality figures. These criteria extend beyond the
quality of the input data to include features of the estimation process such as
transparency and participation (Walker, 2004).
Anti-retrovirals (ARVs) have altered the complexion of HIV/AIDS management in
Thailand. HIV infected volunteers help the state deliver comprehensive services and
assist with follow-up and adherence programme. Alongside improvements in drug
provision, a focus on pharmaceutical treatment has left other issues, such as
community support of orphans and the social responses to living with HIV, less
central within community responses. As they take on new responsibilities, people
living with HIV/AIDS groups move from activities focused on reversing local
stigma to constitute a new social movement that is increasingly prominent in Thai
civil society. As part of a broadening advocacy profile, the PLHA movement is now

engaging in a politics of difference defined not simply by presence or absence of
HIV but also by wider issues of national identity and belonging (Lyttleton, 2007).
For HIV-positive individuals, good nutrition, physical exercise and adhering to
medication and food safety practices are important lifestyle factors. Smoking, drugs
and alcohol should be avoided because they can weaken the body’s immune system,
making individuals prone to infections.
2.4.1 Caregiver to PLWA
Hunt (2003) has documented the negative biopsychosocial effects associated with
providing care for a relative or friend. These negative effects of caregiving have been
conceptualized in many ways in the literature. Although home-based care is
financially cost effective for the health care system, the increased reliance on family
members exposes them to high levels of chronic stress contributing to physical and
psychological morbidity of caregivers. These costs have rarely been examined.
Better understanding of biopsychosocial factors contributing to poor health outcomes
and the needs of caregivers for information, support, and assistance with coping in
needed.
In various parts of the world, there are people who believe that HIV / AIDS is caused
by witchcraft, karma or other spiritually based causes. In addition, examples of
HIV/AIDS stigma, discrimination and rejection have been noted throughout the
world. One of the most effective ways of reducing this stigma is through education.
Such education can be provided through individual, group or community outreach
sessions (WHO, 2000).
Challenges to improving access to care and keeping patients in care have been
documented in a variety of studies. The difficulty of keeping patients in care, for
example, is illustrated by a 1994 study showing that 27% of HIV infected patients
delayed seeking medical care for more than 1 year and 12% for more than 2 years
after initially testing as seropositive (Rio, 2003).

2.4.2 Home-Based Care to the PLWA
People living with AIDS should take care of themselves as much as they can for as
long as they can. They need to be and feel as independent as possible. They need to
control their own schedules, make their own decisions, and do what they want to do
as much as they are able to. They should develop their own exercise programme and
eating plan. In addition to regular visits to the doctor, many people with AIDS work
at staying healthy by eating properly, sleeping regularly, doing physical exercises,
praying or meditating, or other similar things. If the caring person finds something
that helps them, encourage them to keep it up. An exercise programme can help
maintain weight and muscle tone and can make a person feel better if it is tailored to
what the person can do. Well-balanced, good-tasting meals help people feel good,
give them energy, and help their body fight illness. People with HIV infection are
better off if they don't drink alcoholic drinks, smoke, or use illegal drugs. Keeping
up-to-date on new treatments and understanding of what to expect from treatments
the person taking care is also important (Gill, 2001).
Dementia (having trouble thinking) can be a problem for a person with AIDS. AIDS
can affect the brain and cause poor memory; short attention span; trouble moving,
speaking, or thinking; less alertness; loss of interest in things; and wide mood
swings. These problems can upset the person with AIDS as well as the people
around them. Mental problems can make it hard to follow the planned routines for
care and make it difficult to protect the person with AIDS from infections. Be
prepared to recognize these problems, understand what is happening, and talk to the
doctor, nurse, social worker, or mental health worker about what to do (Folkman,
2003).
2.4.3 Care of Dying PLWA at Home
National reports on HIV/AIDS response have shown that there is a big gap between
the policy commitments and its implementation. Neither a functional institutional
mechanism nor the leadership is fully prepared for the sectoral policies in Nepal.
Among the ten areas of commitments to address HIV/AIDS, leadership, personal

Ph.D. Thesis on HBC by RS Mehta.pdf

Ph.D. Thesis on HBC by RS Mehta.pdf

More Related Content

Ph.D. Thesis on HBC by RS Mehta.pdf