The document describes a research grant application to assess the impact of an education intervention program on care and support for people living with HIV/AIDS receiving antiretroviral therapy at BPKIHS in Nepal. The principal investigator is an associate professor in the Medical-Surgical Nursing Department. The project aims to evaluate knowledge, attitudes and practices regarding care and support for PLWHA, develop an education package on care and support, provide the education intervention, and evaluate its effectiveness. The application reviews literature on the HIV/AIDS situation in Nepal and caregiver burden for PLWHA.
1. 1
B. P. Koirala Institute of Health Sciences, Dharan Nepal
APPLICATION FORMAT FOR RESEARCH GRANT
Section–A
1. Title of the research project:
IMPACT OF EDUCATION INTERVENTION PROGRAMME ON CARE & SUPPORT TO THE PEOPLE
LIVING WITH HIV/AIDS RECEIVING ART AT BPKIHS
2. Name and designation of:
A. Principal investigator:
Name:
Designation: Associate Professor, Medical-Surgical Nursing Department, College of Nursing
S.N. Name Designation Department
3. Expected duration of the proposal: 1 Year
4. Amount of grant in – aid asked Rs. = 25,000/-
5. This is new project: Yes.
2. 2
Declaration
1. I/we have read the terms and the terms and conditions of BPKIHS research
grants, and agree to abide by them.
2. I/we agree to submit, within three months from the date of termination of the
project, a report on the work done.
3. I/we agree to maintain a stock book for purchases made for he project. I/we
shall submit the complete statement of account within three months of the
termination of the project, and at any other time as required by the accounts
section.
4. I/we agree to acknowledge the grant in any publication resulting from the
project if it is approved for financial assistance.
5. I/we declare that no research grant is already available for the research project
from any other source.
6. I/we declare that the project will be conducted as per the highest ethical
standards applicable to animal/human experiments.
Signatures (with seal and date):
Principal Investigator Signature Date
Co-investigator Signature Date
Remarks form the HoD of the Principal Investigator:
Date: Signature & Seal of the HoD/Chief
Remarks for the HoD of the Co-investigator:
3. 3
Section-C
Details of the research project
1. Title of the research project
Impact of Education Intervention Programme on Care & Support to the People
Living With HIV/AIDS Receiving ART at BPKIHS
2. Objectives.
1. To assess the Knowledge, Attitude and Practices (KAP) regarding the care &
support to the People living with HIV/AIDS receiving ART at BPKIHS.
2. To prepare an education intervention package on care & support.
3. To provide the education intervention on care & support to the PLWHA.
4. To evaluate the effectiveness of implemented education intervention
programme.
3. Summary of the research project.
The present study will provide an initial picture of AIDS-affected Clients and their
families. It is evident that families play a major role of support for HIV/AIDS patients
in Nepali society. Caregiver burden is one of the patient-related outcomes, which is
the most common outcome measure in caregiver research. The demands on the
family caregivers of these patients are enormous and need to be addressed. The
determinants that are associated with caregiver burden such as caregiver
characteristics, patient characteristics and social stigma are important for health
workers to minimize the burden of care so that appropriate interventions can be
developed for persons with AIDS and family members who share the work of
managing their care at home.
The objective of this study will be to assess the knowledge about care and support to
the people living with AIDS (PLWA) and plan and implement the education
intervention programme in care and support to the PLWHA and also evaluate the
effectiveness of the training programme. About 88 subjects using total enumerative
sampling technique will be selected. Using semi-structured interview schedule data
will be collected and analyzed.
4. Review of the literature pertaining to the project.
In world More than 40 million people are living with HIV/AIDS, 2.3 million are under
15 yrs , 14000 new infections each day , 1.7 million human infected with HIV/AIDS,
4. 3.1 million deaths from AIDS , Million new HIV cases (13425) per day. In south East
Asia 6.3 million PLWHA in 2005 as reported by UNAIDS1.
In Nepal the estimated number of PLWHA at end 2005 is 61,000, HIV prevalence in
2005 was 0.5, estimated number of AIDS cases are 7,800, number of child (0-18)
orphaned by HIV/AIDS is 18000, receiving Ant 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
fueled by risk behavior, extensive commercial sex, low condom use and access,
injecting drug use, population movements (cross-border/rural-urban migration), and
trafficking1.
Social and economic vulnerabilities, including poverty and illiteracy, highlight the
need to act effectively and aggressively to reduce it’s 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 persons2.
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 (4-10 %), and intravenous drug users (IVDU's) both in
rural and urban areas (68 %). Since 1988 when the first case was diagnosed
MoHP/DoHS and different stakeholders came forward to address HIV and AIDS
issues3.
A significant percentage (60%), 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 reported by Aich5 in their study.
To reduce the transmission of HIV/AIDS/STD, a number of activities have been
undertaken over the last decade. National Centre of AIDS and STD Control (NCASC)
were established in 1993. NCASC is a coordinating body under the MOH, which looks
after the AIDS and STD prevention activities in the country4.
Surveillance data is scarce in Nepal. However, limited data indicate that HIV
prevalence is currently around 0.5 percent in the general population. As of June
2002, the Ministry of Health (MoH) has reported 606 cases of AIDS and 2,392 HIV
infections3. Given the existing medical and public health infrastructure in Nepal and
the lack of continuity in national HIV/AIDS surveillance systems, it is very likely that
the actual number of cases is many times higher. UNAIDS/WHO estimate for 2002
around 60,018 people living with HIV/AIDS and 2958 AIDS related deaths in that
year alone4.
4
5. HIV infection has taken root in South Asia and poses a threat to development and
poverty alleviation efforts in the region. HIV infection is fueled by risk behavior,
extensive commercial sex, low condom use and access, injecting drug use, population
movements (cross-border/rural-urban migration), and trafficking2.
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 persons3.
However, the currently low prevalence among the general population masks an
increasing prevalence in several groups i. e. sex workers in Katmandu 17.3%, IDUs
40.4% nationwide, and 68% in the Kathmandu Valley (NCASC, 2000; FHI, 2002). It is
now evident that Nepal has entered a "concentrated epidemic", i.e. the HIV/AIDS
prevalence consistently exceeds 5% in one or more sub-groups4.
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 1,00,000-
2,00,000 young adults will become infected and that overall 10,000-15,000 annual
AIDS cases and deaths due to related illnesses may be expected4.
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 (UNAIDS/NCASC, 2001). 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 with the
high levels of poverty, low status of women, girl trafficking, forced prostitution,
unsafe sexual practices and mobility of migrant workers5.
By March 2004, 715 AIDS cases and 191 deaths have been reported in Nepal, with a
male female ratio of 2.4:1. By December 2003 an estimated number of 40,000 people
living with HIV/AIDS in the country with a national adult prevalence of
approximately by 0.3%. Nepal is currently classified as a country experiencing
concentrated epidemic, particularly among injecting drug users’ and female sex
workers 6.
HIV prevalence among female sex workers increased from 0.7% in 1992 to 17% in
2002. Among IDUs, HIV prevalence reached 50% in 2002. Trends show that in the
western and mid-western sites, HIV among STD patients has been showing a steady
5
6. increase from less than 1% in 1992 to 3% in 2001. In the eastern and central
regions, however, the prevalence among STD patients remains less than 0.5%.
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 numbers of young
Nepalese males working in India. Thus, in addition to the increasing number of HIV
infections occurring among persons with high HIV-risk behaviors in Nepal there are
also increasing numbers of Nepalese female sex workers and young male Nepalese
workers who have bee infected with HIV in India, and who have or will be returning
to Nepal7.
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, and a
host of related topics5.
From the moment scientists identified HIV and AIDS, social responses of fear, denial,
stigma and discrimination have accompanied the epidemic. Discrimination has
spread rapidly, fuelling anxiety and prejudice against the groups most affected, as
well as those living with HIV or AIDS. It goes without saying that HIV and AIDS are
as much about social phenomena as they are about biological and medical concerns.
Across the world the global epidemic of HIV/AIDS has shown itself capable of
triggering responses of compassion, solidarity and support, bringing out the best in
people, their families and communities. But the disease is also associated with
stigma, repression and discrimination, as individuals affected or believed to be
affected by HIV have been rejected by their families, their loved ones and their
communities. This rejection holds as true in the rich countries of the north as it does
in the poorer countries of the south8.
Stigma is a powerful tool of social control. Stigma can be used to marginalize, exclude
and exercise power over individuals who show certain characteristics. While the
societal rejection of certain social groups (e.g. 'homosexuals, injecting drug users and
sex workers') may predate HIV/AIDS the disease has in many cases, reinforced this
stigma. By blaming certain individuals or groups, society can excuse itself from the
responsibility of caring for and looking after such populations. This is seen not only
in the manner in which 'outsider' groups are often blamed for bringing HIV into a
country, but also in low such groups are denied access to the services and treatment
they need.
The effects of societal stigmatization, as well as the degree of care giving demands,
might become overwhelming for the caregivers (Hughes, 1999). Stigma attached to
HIV/AIDS and the association of HIV infection with sexual practices, injection drug
use and death has placed the disease in societal taboos. In Nepali culture, the
perception of AIDS as a frightful contagious disease, resulting from immoral
6
7. behavior, leads to the view that HIV/AIDS patients are 'bad people'. The family
caregivers felt that they are shunned by people around them, including their family
members, relatives, friends and health-care providers, as well as society. Caregivers
of HIV/AIDS patients share some of the burdens related to a stigmatized person.
Mushonga9 found that stigma was associated with perceived burden in HIV/AIDS
caregivers in Zimbabwe.
The current conflict in Nepal, ongoing since 1996, has created a very tense and
insecure situation in the country (Underwood, 2006). With more than 10,000 people
killed, the escalation of the conflict has reached epidemic proportions- and
increasingly, rural Nepalese are finding themselves caught in the middle of the
fighting, their lives and families torn apart by violence. In addition to the growing
violence, the conflict has eroded many positive gains in literacy levels, maternal
health and other key indicators, as the general standard of living and quality of life
for all Nepalese continues to deteriorate5.
PLWA spend most of the time in parents’ home in advanced stage. The family
members provide complex care at home. The major areas of home based care are:
physical care, assisting in ADLs, cooking, Giving medications, Physical exercises,
wound care, basic care of symptoms like fever, headache, oral thrush, cough,
diarrhea, skin infections along with the emotional or psychological support.
In Nepal, knowledge about family care giving of PLWHA is sparse and research in
family care giving is in the infant stages. Prior studies in Nepal indicate that the most
common place for adult AIDS persons to spend the advanced stage of their illness is
in their parents' homes and the most common caregiver is a parent particularly a
mother providing care for almost two-thirds of the Nepali adults who died of AIDS.
For married PLWHA, the spouses, especially wives, often play a major role. As more
complex care is offered at home, mothers and wives will continue to be the main
caregivers of PLWAs10. Similarly, in other countries, such as Uganda and Zimbabwe,
researchers found the same phenomena of parents as the primary caregivers of
PLWHA. PLWHA who are single or non-partnered often have no one on whom they
can depend for care and support other than their parents, siblings or other relatives.
Hence, many PLWHA who live away from their place of origin are likely to return to
their family home when they can no longer earn a living or when they need extensive
care because the symptoms worsen11.
The substantial increase in the number of persons living with HIV/AIDS in Nepal has
important implications for providing care. Because AIDS is a fatal illness, supportive
care continues to be a crucial issue, influencing the government's attempt to develop
appropriate policies to address the care needs of patients with HIV/AIDS. With a high
number of PLWHA, the demands of family caregivers who take responsibility for the
care of these patients at home are escalating. The care of these patients can place a
significant burden on family caregivers. Thus, the degree of burden experienced by
family caregivers is an important concern. The concept of outcome emphasizes the
patient's well being. However, there is a growing body of research related to the
7
8. outcomes of family care giving. Caregiver burden is one of the patient-related
outcomes, which is the most common outcome measure in caregiver research.
Burden is one of the most commonly used variables in care giving research both as a
predictor and as an outcome. However, much published research has identified the
determinants in the effort to predict or explain caregiver burden. Several definitions
of caregiver burden have been defined in the literature. Caregiver burden, an
outcome measure, as the extent to which caregivers perceive their emotional or
physical, social life, and financial status as suffering as a result of caring for their
relative2. Caregiver burden might be defined as a predictor such as 'an external
demand or potential threat that has been apprised as stressor. Furthermore,
caregiver burden might be defined as 'the consequences of the activities involved with
providing necessary direct care to an ill relative or friend that result in observable
and perceived costs to the caregiver12.
Caregiver burden is a multidimensional phenomenon reflecting the physical, psycho-emotional,
social and financial consequences of caring for an impaired family
member. Based on Donabedian (Donabedian, 1980), who originally proposed the
structure, process, outcome framework for the purpose of quality assessment, and
the Outcome Model for Health Care Research that extended the work of Donabedian,
burden of care of PLWHA can be linked to an outcome of care.
Structure, which equals input of care, related to non-clinical influences on outcomes
is composed of two categories: (i) characteristics of the caregiver; and (ii)
characteristics of the patient. The latter are being the stronger predictor of caregiver
outcomes (Fitting, 1985). The process of care is patient self-care and self-care
burden. The outcome of care is caregiver burden and quality of life of caregivers.
Caregiver characteristics that might influence caregiver outcomes include age,
gender, socioeconomic status, duration of care giving and family relationship between
the patient and the caregiver.
Many researchers have reported that caregiver characteristics have inconsistent
effects on caregiver burden. Some studies have found that younger caregivers
experience greater burden than older caregivers13. In contrast, Reinhard did not find
any associations between caregivers' age and overall burden.
HIV/AIDS is emerging as a major threat in the socio-economic and health sectors of
Nepal. Their multiple effects have so far been minimal in the country, but their
potential impact is immense. The first AIDS case in Nepal was detected in 1988.
Since then the number of HIV/AIDS cases has been increasing gradually. In Nepal
HIV transmission is mainly heterosexual. Some of the surveys reveal that there is
concentrated epidemic among injecting drug users and commercial sex workers3.
The evidence from studies indicates that female caregivers are more likely to
experience burden than are male caregivers (Reinhard, 1994). However, researchers
also reported that the caregivers' gender was not associated with burden14. Family
8
9. income was not associated with objective burden Grifstrom14 Subjective burdens or
overall burden. Moreover, in the study that investigated caregiver patient
relationships, the findings have shown that spousal caregivers experienced greater
personal burden than adult daughter or son caregivers15. The length of time in the
care giver role has yielded various findings as to caregiver burden. The caregivers'
ability to tolerate problem behaviors increased with time as disease progressed in
caregivers of dementia patient9. Conversely, Gaynor (found feelings of perceived
burden to be higher among women who had been involved in care giving for an
extended time.
HIV/AIDS prevention, care, support and treatment continuum regards HIV/AIDS as
a chronic disease requiring treatment throughout life. Experiences from several
countries have demonstrated that a continuum of prevention, care and treatment
from hospital to home is the optimum for those affected. WHO South-East Asia
Regional Office (SEARO) is promoting a patient-centred approach through a
continuum of prevention, care, support and treatment by decentralization of services,
which includes an adequate referral and collaborative care network from hospital to
the community and home.
The public health approach to HIV/AIDS chronic care is patient-centric. As with
other chronic illnesses, such as diabetes and hypertension, patients manage their
care. Patients need to be educated about the disease so that they can make informed
decisions on adherence and management, and be prepared to deal with the
challenges of living with a chronic disease. They need to know when and how to
interact with the health services available in the community. For example, a person
on treatment who may experience diarrhoea should know when to rush to the health
facility for medical attention, that is if blood is present or there is associated fever, or
when to relieve the symptom with a locally available remedy.
Community participation is required for every aspect of HIV prevention and control,
and includes advocacy, delivery of services and support to patients. A strong
community leadership or an effective civil society involvement in policy/decision-making
will lead to better and more sustainable health outcomes. This is because
HIV/AIDS is not only a medical issue. People with HIV/AIDS face other psycho-social
challenges, such as stigma and discrimination, which are best addressed through
strong community support. In partnership with the health sector, civil society groups
(including faith-based groups) can offer a wide range of support services, education,
home-based care, training in income-generating activities and treatment adherence
counseling.
9
Rationale of the study:
The main aim of this study is to explore the knowledge about care and support
among the PLWHA receiving ART treatment at BPKIHS. Based up on the pretest
findings and available resources the HBC education intervention package will be
10. prepared and appropriate training package will be developed to meet the need of the
clients receiving ART therapies at BPKIHS. Post-test evaluation will be also conducted
so that the impact of education intervention training programme will be evaluated.
The training programme will be very appropriate to manage the symptoms at their
own level and at their on residence. The main important feature of this training is
that investigators themselves involved in the management of the client receiving ART
at BPKIHS.
10
5. Research design and methodology.
The quasi-experimental research design was adopted to carry out the study, using
single group pre-test post-test research design. This research study was conducted
among all the people living with AIDS receiving ART at BPKIHS.
About 85 people living with aids receiving ART at BPKIHS will be selected using total
enumerative sampling method. Using pre-tested tools the pretest survey was
conducted before education intervention.
Based upon the available literature and pre-test findings the education package on
care & support will be prepared and content validity will be established with the
concerned experts. The main contents in education package are: management of
complications, nursing care of common problems, management of OIs, stigma
management, and services available at BPKIHS.
After the pre-test, the education intervention programme will be provided using the
prepared educational package. This training was 3 hours sessions. The Education
intervention programme will be arranged in OPD days daily that is Monday,
Wednesday and Friday continuously for five weeks so that each subjects has
opportunity of participate minimum one time in the education session and get
adequate time to interact with the investigators and discuss the modules provided to
them and clarify and quires. During the training session lecture, discussion, role
play, brain storming, video show was arranged for better results. The current
practioners and experts of the field were utilized as a trainer. Training module
prepared was given to each participant. Various visual aids and posters were used
during the training course.
After the 3 Months of training programme post test will be conducted. The collected
data will be analyzed using SPSS-11.5 soft ware package. The descriptive statistics
i.e. mean, Percentage, range and SD were used to analyze the data.
Details about the education intervention (training) programme:
Based up on the pretest findings, available resources and considering the current
problems expressed by the PLWHA receiving ART at BPKIHS, the education
intervention package will be developed. After the pretest the education intervention
programme will be arranged in ART clinic in Tropical ward three times per week i.e.
11. on ART clinic days continuously for three months (i.e. 3 times per week for 5 weeks).
Total 15 sessions of education intervention programme will be arranged, so that
each participant will be able to participate in the education intervention programme
2-3 times and adequate time will be available for intervention and discussion, so that
their confidence level will be raised. After the education intervention 3 months later
the post test will be also taken and effectiveness of training will be evaluated. Based
up on the findings further extension of programme or necessary action will be taken
accordingly.
11
11. ORGANIZATION OF THE STUDY: (TIME SCHEDULE)
SN Activities Duration/Time
1. Literature review and finalization of the project 2 Months
2. Pre-testing and finalization of tool 1 Months
3. Education Intervention and Post test 6 Months
4. Analysis of Data 1 Months
5. Report writing and Submission 2 Months
……………………….
1 Year
Section-D
Details of the Budget:
SN PARTICULAR/DETAILS RATE TOTAL AMOUNT
(RS)
1 Trainers (3 times/week) 15 times x 480 Rs 7200
2 HBC package(booklet) preparation 100 pcs x 25 Rs 2500
3 AV aids: Pamphlet/charts/posters 2000
4 Stationary: paper/pencil/OHP Sheet 1000
5 Refreshment for participants and trainers 3600
6 Meeting/seminar/discussion 500
7 Pre-test/Post-test tool preparation and
data collection
1000
8 Data entry/Analysis /Result preparation 2000
9 Computer typing/ printing / binding etc 2000
10 Miscellaneous 3200
GRAND TOTAL 25,000
12. 12
References.
1. UNAIDS Report (2006). Understanding the latest estimation of 2006 report on the global
AIDS epidemic
2. Hunt, C.K. (2003) Concepts in caregiver Research. Journal of Nursing Scholarships, 35(1):
27-32.
3. Bhardwaj, A., Biswas, R., & Shetty, K.J. (2001) HIV in Nepal: Is it rarer or the tip of an
iceberg? Trop Doct, 31: 211-213.
4. NCASC (2061), AIDS News letter: Quarterly (Asoj). Women, Girls, HIV & AIDS, 53:13-17.
5. Underwood, C. (2006; July-18) HIV/AIDS burdens more than patients. Express News.
6. Donabedian, A. (1980) Explorations in Quality Assessment and Monitoring, Ann Arbor, MI,
USA: Health Administration.
7. Choo, W.Y., Low, W.Y. & Karina, R. (2003) Social support and burden among caregivers of
patients with dementia in Malaysia. Asia-Pacific Journal of Public Health; 15: 23–29.
8. Mwinituo Prudence, Mill JE. Stigma associated with Ghanian Caregivers of AIDS patients.
Western Journal of Nursing Research. 2006; 28(4): 369-382.
9. Mushonga, R.P. (2001) Social support, coping, and perceived burden of female caregivers of
HIV/AIDS patients in rural Zimbabwe. Unpublished doctoral dissertation, Case Western
Reserve University, Ohio.
10. Chappell, N.L., Reid, R.C. (2002) Burden and well being among caregivers: Examining the
distinction. Gerontologist; 42: 772–780.
11. Vithayachockitikhum, N. (2006) Family caregiving of persons living with HIV/AIDS in
Thailand. Caregiver burden, an outcome measure. International Journal of Nursing Practice;
12(3): 123.
12. Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986) Subjective burden of husbands and wives as
caregivers: A longitudinal study. Gerontologist; 26: 260–266.
13. Reinhard, S.C. (1994) Living with mental illness: Effects of professional support and
personal control on caregiver burden. Research in Nursing and Health; 17: 79–88.
14. Grafström, M., Fratiglioni, L., & Sandman, P.O. (1992) Health and social consequences for
relatives of demented and non-demented elderly. A population-based study. Journal of
Clinical Epidemiology; 45: 861–870.
15. Moffatt, B.C. (1986) When Someone You Love Has AIDS. New York: NAL Penguin.
13. 13
Interview Schedule
IMPACT OF EDUCATION INTERVENTION PROGRAMME ON CARE & SUPPORT TO THE
PEOPLE LIVING WITH HIV/AIDS RECEIVING ART AT BPKIHS
Instructions:
The Information obtained will be kept confidential and will be used only for this study purpose.
Code No:
Part-I: Demographic data of Client:
1. Name of the client (Optional):
2. Gender: a. Male b. Female
3. Age:…… ……… Yrs
4. Religion: a. Hindu b. Buddhist c. Christian d. Muslim e. Others:
5. Caste: a. Brahmin b. Chhetri c. Newar d. Mongolian e. Terai Origin
6. Education level: a. Illiterate b. Can Read & Write c. Primary d. Secondary
e. Higher secondary & above
7. Marital Status: a. Married b. Unmarried c. Divorced / Separated d. Widowed e. Steady Partner
8. Occupation: a. None b. Unskilled c. Skilled d. professional e. Students f. Others:
9. Duration of illness (feeling sick) for: ………….Yrs/ Months
10. Confirmed HIV Positive Test (duration): ………… Yrs/ Months
11. CD-4 Count :
12. Clinical stage of Disease: a. I b. II c. III d. IV
13. Place (Institute/Hospital) of HIV Confirmed Test: ……………….
14. ARV Receiving: a. Yes b. No, 11.a If Yes for ……Yrs/Months
15. Status of Pulmonary TB: a. Positive b. Negative c. Do not know
16. Smoking Habit: a. Smoker b. Non-Smoker c. Do not know
17. Habit of taking Alcohol: a. Present b. Not Present c. Don not know
18. History of Subastance/Durg abuse: a. Present b. Not present c. Do not know
19. Are you facing the following problems (MR):
a. Stress and Anxiety a. yes b. No
b. Alcohol use a. yes b. No
c. Substance dependence a. yes b. No
d. Insomnia a. yes b. No
e. Eating disorders a. yes b. No
f. Fatigue / Malaise a. yes b. No
g. Vague psychosomatic complains a. yes b. No
h. Suicidal ideation/attempts a. yes b. No
i. Relationship Problems a. yes b. No
j. Others (Specify): a. yes b. No
14. 14
Part-II: Knowledge about care and support to the PLWHA
1. How much do you know about HIV/AIDS?
a. Very few b. Enough c. Excellent
2. From where you get information about HIV/AIDS?
a. Newspapers b. People c. Books d. Internet e. Others:
3. How big is the HIV/AIDS problem in Nepal?
a. Very big b. Big c. Medium d. Small e. No problem
4. Do you think you are at risk of getting AIDS?
a. High risk (Severe) b. Risk (Moderate) b. May be /little (Mild) c. No risk
5. What are the risk behaviour about HIV/AIDS? (MR) (Yes = , No = x)
a. Unprotected Vaginal sex
b. Blood Transfusion
c. Unprotected Oral
d. Anal sex
e. Kissing
f. Deep kissing
g. Hugging
h. Friendships
i. Using same cloths
j. Drinking from same glass
k. Using same raiser
l. Animal bites
m. Others:
7. What is the cause of AIDS?
a. Bacteria b. HIV virus c. Mosquito d. I do not KNOW
8. Where are the HIV/AIDS viruses found?
a. Saliva and tears a. Yes b. No c. do not know
b. Blood a. Yes b. No c. do not know
c. Semen /vaginal secretions a. Yes b. No c. do not know
d. Others (please specify) ….
9. Is HIV/AIDS a communicable disease? a. Yes b. No c. do not know
10. Is HIV/AIDS a curable disease? a. Yes b. No c. do not KNOW
11. Do you know AIDS patients are more prone to develop opportunistic illness?
a. yes b. No c. do not know
12. Is Vaccine is available against HIV? a. yes b. No c. do not know
13. Do you know about the exposure prophylaxis of HIV/AIDS?
a. yes b. No c. do not know
14. How much you are capable (prepared) to manage the following self health problems?
(3= Fully, 2= All Right, 1= Little/some extent, 0= Not at all)
A. Physical Problems
a. Fever / 3 / 2 / 1 / 0 /
b. Diarrhoea / 3 / 2 / 1 / 0 /
c. Vomiting / 3 / 2 / 1 / 0 /
d. Nausea / 3 / 2 / 1 / 0 /
e. Allergy / 3 / 2 / 1 / 0 /
f. Fungal Infection / 3 / 2 / 1 / 0 /
g. Skin rashes / 3 / 2 / 1 / 0 /
h. Herpes Zoster / 3 / 2 / 1 / 0 /
i. Abscess and sores / 3 / 2 / 1 / 0 /
j. Oral sores / 3 / 2 / 1 / 0 /
k. Oral thrush / 3 / 2 / 1 / 0 /
l. Cough / 3 / 2 / 1 / 0 /
m. Pneumonia / 3 / 2 / 1 / 0 /
n. Tuberculosis / 3 / 2 / 1 / 0 /
o. Others: Pain / 3 / 2 / 1 / 0 /
B. Psychological/ Mental Problems:
a. Mental stress: / 3 / 2 / 1 / 0 / b. Pain: / 3 / 2 / 1 / 0 /
15. C. Religious problems: / 3 / 2 / 1 / 0 /
D. Management of Side effects of Drugs: / 3 / 2 / 1 / 0 /
15. How much you are able to measure the following vital signs and other problems of the
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PLWA? (3= Fully, 2= All Right, 1= Little/some extent, 0= Not at all)
a. Temperature: / 3 / 2 / 1 / 0 /
b. Pulse: / 3 / 2 / 1 / 0 /
c. Respiration: / 3 / 2 / 1 / 0 /
d. Blood Pressure: / 3 / 2 / 1 / 0 /
e. Dehydration: / 3 / 2 / 1 / 0 /
f. Oral Thrush: / 3 / 2 / 1 / 0 /
g. Lymph node: / 3 / 2 / 1 / 0 /
h. Jaundice: / 3 / 2 / 1 / 0 /
i. Anemia: / 3 / 2 / 1 / 0 /
j. Cyanosis: / 3 / 2 / 1 / 0 /
k. Edema: / 3 / 2 / 1 / 0 /
16. 16. Do you know how to prepare the Bleaching / Chlorine Solution in your home?
a. yes b. No c. Not sure
17. What will you need to become better prepared to self care of own problems so that able to
manage problems at home (MR) (Yes = , No = x):
1. Need to maintain physical integrity: Knowledge about HIV/AIDS.
2. Need to learn: how to care the PLWA
3. Need to act according to a set of beliefs and values: right things to do.
4. Need to communicate: Confidentiality and trust
5. Need to feel worthwhile and useful: support from health professionals
6. Need for continuity of care: with same group of health professionals
7. Psychosocial support
8. Ongoing training
9. Periodic supervision from health workers
10. Commensuration for expenses: Investigation/Treatment/Transport etc
11. Appropriate equipments (e.g. home based care kit)
12. Others (Specify) :
18. Do the people discriminate you? a. Yes b. No c. Do not know
19. How concerned or worried about your health have you been?
Not concerned at all 10 8 6 4 2 0 Very Concerned
20. How relaxed or tense have you been?
Very Relaxed 10 8 6 4 2 0 Very tense
21. How much depressed or cheerful have you been?
Very depressed 10 8 6 4 2 0 Very cheerful
22. Questions related to Home based care aspects:
a. Who provides you the home base care?
b. Do you receiving home based care properly?
c. Do you feel home based care is essential?
d. Do the family members discriminate you?
e. Do you feel the neighbors or friends or community people neglect you?
f. Are you receiving home based care from any I/NGOs?
g. Do you feel neglected in home?
h. Give your suggestion feedback regarding better home base care?
23. Any Suggestion/Feedback/comments related to care and support activities.
Home based care to the PLWA in eastern rural Nepal: An aspects analysis