1. Title of the research project:
Family Burden of the People Living with AIDS
Getting Treatment in BPKIHS
Details of the research project
1. Title of the research project
Family Burden of the People Living with AIDS Getting Treatment in BPKIHS
2. Objectives.
General Objectives:
To find out the family burden of the people living with AIDS getting treatment in BKIHS
Specific Objectives:
1. To find out the demographic profile of the people living with AIDS (PLWA) and
their family members.
2. To explore the principal care providers problems of the people living with AIDS.
3. To find out the association between demographic variables and family burden.
4. To suggest the ways and means to develop and Implement the strategies for better
patient care.
Null Hypothesis:
There will be no association between family burden and caregiver characteristics and
social stigma.
3. Summary of the research project.
The Family: The concept of family need not be limited to ties of blood, marriage, sexual
partnership or adaptation. Any group whose bonds are based on trust, mutual support and
a common density may be regarded as a family. All families, traditional or nontraditional, can help stop AIDS spreading by making sure that their members understand
and action the facts about HIV and safer behavior and if on of their members does fall ill
with AIDS, families are often the best sources of compassionate care and support.
It will be exploratory research study design, conducted among the caregivers’ family
members of AISDS clients getting treatment at BPKIHS, selecting 30 subjects using
continent sampling technique. The data will be collected using interview schedule and

2. focus group discussion along with he use of Family Burden Assessment Scale and the
collected data will be analysed using SPSS-10.5 and STATA software package,
conclusion will be drawn.
4. Review of the literature pertaining to the project.
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. Zarit and colleagues 1 defined
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 relative'.
Caregiver burden might be defined as a predictor such as 'an external demand or potential
threat that has been appraised 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
caregiver2.
Caregiver burden is a multidimensional phenomenon reflecting the physical,
psychoemotional, social and financial consequences of caring for an impaired family
member. Based on Donabedian3, 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 nonclinical 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. 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 caregiving 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 caregivers4 In contrast, Reinhard did not find any associations between
caregivers' age and overall burden.5
The evidence from cross-sectional studies indicates that female caregivers are more likely
to experience burden than are male caregivers.4 However, researchers also reported that
the caregivers' gender was not associated with burden.5 Family income was not associated
with objective burden,6 subjective burdens or overall burden.8 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 caregivers. 7
The length of time in the caregiving role has yielded various findings as to caregiver
burden. The caregivers' ability to tolerate problem behaviours increased with time as
disease progressed in caregivers of dementia patient. 1 Conversely, Gaynor14 found
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3. feelings of perceived burden to be higher among women who had been involved in
caregiving for an extended time.
Patient characteristics that have been cited in the literature as having an influence on
caregiver outcome include patient's age, ADL, activity of instrumental tasks and stigma.
Few studies within the caregiving literature have evaluated patient's age and caregiver
burden. No studies were found in the relation of patient characteristics and burden of
HIV/AIDS caregivers in Nepal.
The effects of societal stigmatization, as well as the degree of caregiving demands, might
become overwhelming for the caregivers.9 Stigma attached to HIV/AIDS and the
association of HIV infection with sexual practices, with injection drug use and with death
have placed the disease in societal taboos. In Nepali culture, the perception of AIDS as a
frightful contagious disease, resulting from immoral behaviour, 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. Mushonga10 found that stigma was associated with
perceived burden in HIV/AIDS caregivers in Zimbabwe.
Caregiving is a demanding responsibility. Research in caregiving seems to be an
accumulation of diverse points of views. Over the past decade, many studies have
emphasized the negative consequences of caregiving, generally referred to as caregiver
burden,17 caregiver stress and caregiver strain. Some studies used positive terms such as
caregiver esteem, caregiver satisfaction and uplifts of caregiving. Other research used
neutral terms including health, mental-health outcomes, caregiver appraisal, caregiver
well being and quality of life.11
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 (0.5 percent). However, some
of the groups show evidence of a concentrated HIV epidemic e.g. sex workers 19.5
percent, migrant population 4-10 percent, and intravenous drug users (IVDU's), both in
rural and urban areas, 68 percent. Since 1988 when the first case was diagnosed
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.
In Nepal, knowledge about family caregiving of PLWHA is sparse and research in family
caregiving 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 PLWAs.12
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4. 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 worsen.2
The new strategy spotlights the following main areas: Vulnerable groups, Young people,
Treatment, care and support, Epidemiology, research and surveillance and Management
and implementation of an expanded response
Broad political commitment, a multi-sectoral approach, civil society involvement, publicprivate 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. 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 behaviour, extensive commercial sex, low condom
use and access, injecting drug use, population movements (cross-border/rural-urban
migration), and trafficking13. 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 persons14.
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 Workers14.
In world More than 40 million people are living with HIV/AIDS, 2.3 million are under 15
yrs , 14,000 new infections each day , 1.7 million human infected with HIV/AIDS 3.1
million deaths from AIDS , Million new HIV cares – 13425/day. In Nepal the estimated
number of PLWHA at end 2005 is 61,000, HIV prevalence in 2005 is 0.5, estimated
number of AIDS cares are 7,800, number of child orphaned by HIV/AIDS is (0-18) is
18000, receiving ART till December 2005 is 210. In south East Asia 6.3 million PLWHA
in 2005 (Source: WHO, UNAIDS).
In Nepal there are 6990 HIV the including AIDS, 1085 leaving with AIDS, New
infection 30/day and 336 death (Source: NCASC June 2006 National statistics)
Cumulative HIV/AIDS situation by category as of Jan, 2005 : Clients of SW/STD –
53.7% , House wives – 12.7% , IDUs – 19.2% , Sex worker (SW) – 12.1% , Perinatal
Transmission – 2.1% and Blood & blood products – 0.2% .
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5. 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, 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 how
such groups are denied access to the services and treatment they need.
In the majority of developing countries, families are the primary caregivers to sick
members. There is clear evidence of the importance of the 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 against within the home. There is also mounting evidence that women and
non-heterosexual family members are more likely to be badly treated than children and
men.
The substantial increase in the number of persons living with HIV/AIDS (PLWHA) 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
outcomes of family caregiving. Caregiver burden is one of the patient-related outcomes,
which is the most common outcome measure in caregiver research.
The study concerning caregiver burden as an outcome is important to nurses who work
with families in communities. The knowledge of caregiver burden can help nurses
develop specific intervention strategies for family caregivers in order to prevent the
negative burden and enhance quality of life 6. The purpose of this study is to examine the
outcome of family burden among of people living with AIDS getting treatment in BKIHS
5. Rational of the study.
The demands and outcomes on the family caregivers of HIV/AIDS patients are enormous
and need to be addressed in terms of public health policy, health economics and patientcare perspectives. The second perspective highlights health-care economic problems. The
care for HIV/AIDS patients is provided through general and infectious disease hospitals
in Nepal. Finally, the increasing demand of family caregivers involves the patient care.
The studies have shown that HIV/AIDS patients would rather stay with their families at
home than in a hospital15. The necessary emphasis on family caregiving is even more
significant because the family member is given the responsibility of the care of people
living with HIV/AIDS.
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6. There has been a growing interest over the past 20 years in exploring the caregiving
experience. Over the course of the AIDS epidemic, family caregivers have provided an
essential source of care to PLWHA. 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 caregiving relationship are
the determinants of caregiver burden6. Nurses are in an excellent position to minimize the
burden of care experienced by family members. This information can help nurses'
knowledge so that they can plan innovative, promotional and proactive care strategies to
treat the burden of caregivers. Measure of caregiver burden is one of the components of
the significant quality of care outcome.
Care giver’s took responsibilities for PLWHA including providing physical care,
assisting with activities of daily living (ADLs), cooking, giving medicine, physical
exercise, wound care, providing basic care for general symptoms such as fever, headache,
oral thrush, cough, diarrhea, skin infection and giving emotional support. The families
experienced enormous burdens related to financial limitations, inadequate resources, and
insufficient support4.
AIDS stigma had a profound and negative impact on the lives of informal carvers.
Caregivers were compelled to give care under cover. Most of the caregivers wanted to
keep their experiences secret and not disclose anything to any body. The demands of
caregiving led many caregivers to with draw from friends, family and work place. This
resulted in isolation and loss of productive ventures16.
This study will assess problems of caregiver family members of PLWHA, educational
packages can be prepared for caregivers, national policy can be developed to decrease
caregiver burden and aid in providing quality care to AIDS patients, along with AIDS
patient’s various training programme can be arranged for their caregivers, caregiver’s
training can play a vital role in minimizing social stigma; adhere to ARV therapeutic
regimen, and minimizing symptoms. The findings of the study help in quality patient care
by training the caregivers using education package and IEC materials and changing the
government policy.
6. Research design and methodology.
A. Research design: This study will be exploratory research design.
B. Research Setting/Sample Area: The study will be conducted among the family
members of AIDS cases getting treatment in BPKIHS.
C. Target population: The family members of people living with AIDS will
constitute the population of the study.
D. Sample and sample size:
Sample: Family members of people living with AIDS. Who fulfill the set
selection criteria will be sample of this study.
Sample size: About 30 family members of PLWA will be included in the study.
E. Criteria for sample selection/Procedure:
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7. The principle care provider family member of diagnosed AIDS client’s for
more than 3 months willing to participate in the study will be included. The
family member of PLWA will be interviewed.
F. Criteria for sample exclusion:
a. Those who refuse to participate in the study.
b. Diagnosed cases of HIV positive for less than 3 months will be excluded.
c. Clients living alone will be excluded.
G. Sampling technique:
Using convenient sampling technique the diagnosed cases for more then 3
months, their principle care provider family member will be selected for
interview.
H. Research instrument:
Interview schedule: To find out the demographic profile of client’s and their
primary care giver.
Family Burden Assessment scale: To evaluate the family burden. The family burden
assessment scale for caregivers is taken from the tool used by Kipp 17etal,
Montogomery8, and Zarit1 after some modification in the statements as per our
context. The tools are well practical, tested, reliable, valid, and universally used in
worldwide. Three questions (Q.N. 13, 14, 15) are added in tools used by Kipp 17 etal
from the tools of Zarit1, and Montgomery8, which are appropriate in this context.
Focus group discussion: To evaluate the problems of the family regarding care of
their patients and, social stigma. Two to three focus group discussion sessions will be
arranged.
• Detailed guidelines are prepared for focus, along with Preset questions.
• One interviewer will ask the question and another will document the responses.
• One interviewer will be trained for data collection especially those who are
involved in AIDS care, along with the investigators.
• Focus group will be arranged at BPKIHS or in public places where the caregivers
can attain easily and feel free to express their views.
• The collected information’s will be compiled and analyzed.
I. Validity of the tool:
Content and face validity of the tool will be again established with the experts of
concerned field. Pre-testing of the tool will be done among 3-4 subjects. Nepali
version of the tool will be prepared and again it will be translated to English for
validity.
J. Methods of data collection/Data collection Procedure:
•
A detailed list of all the cases will be prepared before starting the data
collection.
•
Ethical clearance from concerned authorities (BPKIHS ethical review board)
will be obtained.
•
Permission from concerned authorities i.e. HODs, In-charges etc.
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8. •
•
•
Informed written consent from each subject will be obtained prior to interview.
The family members of PLWA will be separately interviewed.
The interview will be taken from the primary (Main) caregiver of PLWA using
convenient sampling technique. The interview will be also taken at ARV, VCT,
PMTCT centers, and at their home as per feasibility, practicability and
convenient of care giver.
•
2-3 slots of focus group discussion will be arranged among 2-3 family members
group to explore the facts in details, especially social stigma
K. Statistical Analysis of data:
a. Descriptive data analysis: Percentage, Mean and SD will be used for
describing demographic Profile.
b. Inferential data Analysis: Chi-squire, t-test / z-test, ANOVA, Bivariate and
Multivariate linear regression and Correlation will be used to find out
association and draw the conclusions.
L. Limitations of the study:
The HIV/AIDS positive cases getting treatment in BKIHS will be only included in the
study. About 30 subjects will be only included in the study. The people living with AIDS
living alone will be excluded. The People living with HIV positive with symptoms free
and not facing any problems will be excluded.
M. Ethical Issues for the Research:
i. Written permission will be obtained from the concerned authority.
ii. Anonymity of the subjects will be maintained.
iii. The informed written permission will be obtained from subjects.
iv. The subjects will be assured of the confidentiality of the information.
v. Ensure privacy and confidentiality and to hide the patient’s diagnosis from
extended family members. Interview conducted in caregiver in alone, not with
patients and other family members.
5. Results and Discussion: The collected data will be entered in SPSS-10.5 software
package and will be analyzed. The STATA will be also used to analyze the data. The
findings will be presented in table and graphs. Inferential statistics will be used to analyze
and draw the conclusion. The results will be compared with the findings of study
conducted by various investigators on related fields.
6. 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.
Data collection and Focus group discussions
6 Months
4.
Analysis of Data
1 Months
5.
Report writing and Submission
2 Months
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9. ……………………….
1 Year
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10. Section-D
Details of the Budget:
SN
1
2
3
Item/Particular
Personnel cost:
Interviewer: 1 persons for 6 monts
Details
1x6x500
Tool: Preparation, Printing & Testing.
Amount (In NP Rs.)
3,000
1,900
Data Collection
a. Focus group discussion:
Arrangement and Refreshments
b. Incentives for Participants
3x1000
200x30
3000
6000
4
Traveling
a. Data collection: traveling
2000
5
Data Processing: coding and entry
800
6
Report preparation and Typing
3000
7
Data Analysis
2000
8
Photocopy, Printing and Binding
1800
9
Miscellaneous
1500
25,000 /-
Grand Total
Rs. Twenty Five Thousand Only
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11. References.
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wives as caregivers: A longitudinal study. Gerontologist; 26: 260–266.
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HIV/AIDS in Thailand. Caregiver burden, an outcome measure. International
Journal of Nursing Practice; 12(3): 123.
3. Donabedian, A. (1980) Explorations in Quality Assessment and Monitoring,
Arbor, MI, USA:
Ann
Health Administration.
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Generations; 10: 23–26.
5. 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.
6. 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 .
7. Grafström, M., Fratiglioni, L., & Sandman, P.O. (1992) Health and social
consequences for relatives of demented and non-demented elderly. A populationbased study. Journal of Clinical Epidemiology; 45: 861–870.
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Mancini JA (ed.). Aging Parents and Adult Children.
Lexicon, MA, USA:
Lexington
Books, 213–230.
9. Moffatt, B.C. (1986) When Someone You Love Has AIDS. New York: NAL Penguin.
10. 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.
11. Hughes, S.L., Giobbie-Hurder, A., & Weaver, F.M. (1999) Relationship between
caregiver burden and health-related quality of life. Gerontologist; 39: 534–545.
12. Burintramart, P., Lerdmaleewong, M., & Nilmanat, K. (1982) Uncertainty in
illness and coping of family caregivers of hospitalized symptomatic HIV patients.
Thai Journal of Nursing Research; 2: 76–90.
13. Hunt, C.K. (2003) Concepts in caregiver Research. Journal of Nursing
Scholarships, 35(1): 27-32.
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12. 14. 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.
15. AIDS Division, Ministry of Public Health. (1996). Health Care and Social
Service, Received by HIV/AIDS Patients at Home: Lampang Province. Bangkok.
16. Mwinituo Prudence, Mill JE. Stigma associated with Ghanian Caregivers of AIDS
patients. Western Journal of Nursing Research. 2006; 28(4): 369-382.
17. Kipp W, Tindyebwa D, Karamagi E, Rubaale T.(2006),. Family caregiving to
AIDS patients: The role of Gender in caregiver burden in Uganda. Journal of
International women’s studies. 7(4): 1-13.
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