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 Author's personal copy
Home-based Care: A Need Assessment of People
Living With HIV Infection in Bandung, Indonesia
Kusman Ibrahim, RN, PhD
Hartiah Haroen, RN, MN, MKes
Lucas Pinxten, MD, MSc, MPH
The increasing number of people living with HIV
infection (PLWH) in Indonesia has led to an increased
demand for care. Health care facilities are overbur-
dened. Home-based care (HBC) is a valuable strategy
to complement existing health care services and to
extend the continuum of care for PLWH and their fami-
lies. This qualitative study explored the care needs of
PLWH that might provide baseline data for developing
HBC in Bandung, West Java, Indonesia. Data were
collected from 12 key and 25 general participants
through observations, interviews, and focus group
discussions. Findings indicate that HBC is urgently
needed for PLWH, particularly for those who need
palliative care and those who encounter major barriers
to using available health care services. It is recommen-
ded that health care providers and policy makers
strengthen the role of the family in taking care of
PLWH through trainings and knowledge dissemination.
(Journal of the Association of Nurses in AIDS Care,
22, 229-237) Copyright Ó 2011 Association of
Nurses in AIDS Care
Key words: home-based care, Indonesia, need
assessment, PLWH
HIV remains a major public health problem in many
countries. Indonesia is a developing country that faces
the problem of an increasing number of people living
with HIV (PLWH) infection since the first case was
identified in 1987. Recently, the country has been noted
as having the fastest growing HIV epidemic in Asia
(Joint United Nations Programme on HIV/AIDS,
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 22, No. 3, May/June 2011, 229-237
doi:10.1016/j.jana.2010.10.002
Copyright Ó 2011 Association of Nurses in AIDS Care
2008). The estimated number of PLWH in Indonesia
was 333,200 by the end of year 2009, and if prevention
programs do not work effectively, it is predicted there
might be 541,700 infected individuals by the end of
year 2014 (National AIDS Commission, 2009). Inject-
ing drug users are the largest subgroup of these individ-
uals at 52.4%, followed by transgender people (waria)
24.4%, commercial sex workers 15%, and homosex-
uals 5.2% (Ministry of Health, 2009b).
HIV prevalence rates among provinces and cities
vary widely. The Indonesian government has paid
attention to some 100 cities, as cities in general have
a relatively large number of HIV-infected people.
Among the cities in Indonesia, Bandung has the
highest reported number of PLWH, documenting
a maximum of 1,948 cumulative cases by March
2009 (Ministry of Health, 2009a). The increasing
number of PLWH has led to an increased demand for
care for this group. It is estimated that 27% of public
Kusman Ibrahim, RN, PhD, is a lecturer, Faculty of
Nursing, and Researcher of IMPACT (Integrated Manage-
ment for Prevention and Control & Treatment of HIV/
AIDS) project, Faculty of Medicine, Padjadjaran Univer-
sity, Bandung, Indonesia. Hartiah Haroen, RN, MN,
MKes, is a lecturer, Faculty of Nursing, and Researcher
of the IMPACT project, Faculty of Medicine, Padjadjaran
University, Bandung. Lucas Pinxten, MD, MSc, MPH, is
a faculty member of the Department of Work and Social
Psychology, Faculty of Psychology and Neuroscience,
Maastricht University, Maastricht, The Netherlands, and
currently serves as a member of Management Team,
IMPACT Project, Bandung, Indonesia.
 Author's personal copy
230 JANAC Vol. 22, No. 3, May/June 2011
hospital beds will be occupied by PLWH in 2025
according to a baseline scenario by the Australian
Agency for International Development (2006). Hospi-
tals, such as the provincial top referral hospital located
in the city, are already overloaded with patients and
visitors. If hospital capacity is not increased or if other
care initiatives are not developed, the public health
service will fail to supply proper care for PLWH.
Home-based care (HBC) is a valuable strategy to
deliver health care as well as an instrument to mobilize
and strengthen care resources at the family and
community levels. Previous studies suggest that
HBC effectively reduces the economic and human-
resources burdens that are commonly faced by hospi-
tals caring for PLWH (Makoae & Jubber, 2008). HBC
can also promote adherence to antiretroviral therapy
(ART) in resource-limited settings (Weidle et al., 2006),
improve acceptance of and disclosure by PLWH
(Ncama, 2007), and enhance quality of life for PLWH
(Nickel et al., 1996). Currently, few studies have
explored HBC for PLWH in the Indonesian context.
Thus, a qualitative study was conducted to assess the
need for community HBC for PLWH. The results of
this study are expected to lead to the development of
a model of community HBC for PLWH in Indonesia.
Methods and Procedures
Study Design
A descriptive qualitative design was used to
discover, describe, and systematically analyze the
HBC needs of PLWH in Bandung, Indonesia. As re-
ported by Speziale and Carpenter (2007), qualitative
research is committed to discovery through the use of
multiple ways of understanding. The researchers ad-
dressed questions about the HBC needs of PLWH and
selected appropriate methods to answer them. The
following was the main research question for this
study: ‘‘What are the available health care services
for PLWH and what types of care and support are
further needed in a community HBC setting?’’
Study Participants
A purposive sample of 12 key and 25 general
participants was recruited for this study. Participants
were selected by the researchers from the Bandung
Community, with assistance from nongovernmental
organizations (NGOs) working with PLWH. The
inclusion criteria for key participants were as follows:
(a) at least 17 years of age, (b) diagnosed with HIV
infection, (c) living with the family in the same
household, (d) able to communicate verbally, and
(e) willing to participate in the study. General partic-
ipants were potentially involved in the provision of
HBC. They included family caregivers, health care
providers, and community leaders. The number of
key and general informants in this study was deter-
mined by informational considerations (Lincoln &
Guba, 1985). Collection of the data was considered
to be saturated when no new information was
available. At the end of their involvement, all partic-
ipants received a nominal reimbursement fee for
participation.
Study Setting
This study was conducted at a community setting
at the Bandung Municipality, which is located about
180 km southeast of Jakarta, the capital of Indonesia.
Bandung is the fourth most populous city in
Indonesia, with greater than 2.5 million inhabitants
in an area of 16,730 hectares (64.6 square miles).
Most of the population is Muslim and ethnically
Sundanese, which is the second largest of ethnic
groups in Indonesia after Javanese (Bandung AIDS
Control Commission, 2007).
Ethical Considerations
Ethical approval was given by the Health Research
Ethical Committee, Faculty of Medicine, Padjadjaran
University (Number 123/FKUP-RSHS/KEPK/Kep./
EC/2008). Permission for data collection from the
local authorities was also obtained. The participants
were provided with a complete explanation and
written description about the objective of the study,
the research method, and potential risks and benefits
of the study. Participants were invited to ask ques-
tions and to decline or accept participation in the
study; they were informed that they could withdraw
from the study at any time. Verbal or written
informed consent was offered to each informant
before beginning the interview.
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Ibrahim et al. / Home-based Care for HIV-Infected People
Data Collection and Analysis
Data were collected through interviews, group
discussions, and observations. Observations were
performed during home visits for a period of 6
months (between June and December 2008). Field
notes were produced from observations and were re-
corded on the same day. The first access to key partic-
ipants was mediated by the NGO staff who worked
with PLWH. The researcher made appointments
with participants who agreed to participate in the
study, and in-depth interviews were conducted until
reaching the stage where no new information
emerged while conducting interviews. In other
words, sufficient data were acquired by the time the
saturation stage was reached. If saturation is not
achieved, qualitative results have been reported to
be thin, and the reliability and validity of the studies
can be questioned (Morse & Field, 1996; Seidman,
1998). Data collection was extended to general
participants on the basis of the information
from key participants. In the entire study, 12 key
informants, eight family caregiver informants, and
two community informants were interviewed.
Interviews lasted 45 to 90 minutes and were audio-
taped. In addition, focus group discussions were con-
ducted with health care providers and community
leaders to collect data regarding existing community
care practices for PLWH.
All data were immediately entered into a secure
computer. Interview data were transcribed and care-
fully checked for accuracy and consistency. Data
were then analyzed qualitatively by using content
analysis according to a guideline provided by
Hancock (1998). First, the researcher read and reread
all data to get familiar with the situation. Brief notes
were made in the margins for particularly relevant
information with research questions. Second, a list
of the different types of information was drawn
from the margins and carefully reviewed; the list
was then categorized on the basis of commonalities
and differences. The researcher then made a list of
categories and examined the overall categories, link-
ing each item of data and reducing overlapping data
in the same category. Third, the categories were
organized into major and minor categories. Major
categories were referred to as themes and minor cate-
gories as sub-themes. Fourth, the overall major and
231
minor categories were scrutinized to determine fit
and linked with relevant information from the field
notes or other sources of data. The researcher
repeated the same process for each interview tran-
script. Finally, the researcher collected and summa-
rized all extracted data from interviews and field
notes into one data set, sorted by overall major and
minor categories. The researcher then reviewed all
categories and items of data to determine a method
to fit those entities together with regard to major
(themes) and minor categories (sub-themes). To
strengthen validity and reliability, the data were
brought back to selected participants to confirm
appropriateness of the findings.
Findings
Characteristics of Informants
Twelve key participants were interviewed and their
characteristics were presented using pseudonyms K1
to K12. Their ages ranged from 18 to 39 years (M 5
30; standard deviation 5 6.59). One participant had
a permanent job in the private sector, five were self-
employed, and six were housewives. Eight had
completed senior high school, two had completed
junior high school, one had a bachelor’s degree, and
one had only finished primary school. Participants
had been living with HIV for a period ranging from
6 months to 4 years (M 5 2 years). Of the 12 partici-
pants, six had used drugs, five no longer used drugs,
and one continued to inject drugs, although less
frequently as compared with previous years.
The 25 general participants were referred to by
pseudonyms from G1 to G25. They consisted of
nine men and 16 women. Their ages ranged from
24 to 70 years (M 5 43; standard deviation 5
12.97). Eight of the 25 were family caregivers, nine
were health care providers (nurses, physicians, and
HIV counselors), and eight were community leaders
(village head man, religious leader, head of sub-
village, youth organization, and village health volun-
teer). The family caregivers had been looking after
their HIV-infected family members for .5 to 5 years
(M 5 1.5 years). Health care providers had been
caring for HIV-infected patients from 1 to 6 years
(M 5 1.5 years).
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232 JANAC Vol. 22, No. 3, May/June 2011
Current Health Care Services and Support for
PLWH
Both key and general participants described the
current health care services and support available
for PLWH, which were categorized into the avail-
ability of health care services, health care providers,
and community-based care activities, as well as
barriers in accessing health care services and commu-
nity resources. These are described in the following
paragraphs.
Availability of health care services. All key
participants reported that they might use health care
facilities that were available in the community for
general health services, either offered by the govern-
ment or by private care groups. However, not all of
the health care services offered specific services-
related HIV such as voluntary counseling and testing,
CD41 T-cell tests, and ART. According to the informa-
tion obtained from the data collected, three government
and two private hospitals in Bandung City offered these
services as well as general care. In addition, one private
clinic and one community health center offered coun-
seling, testing, and primary care, whereas 12 other
health centers offered counseling, primary care, and
a needle exchange service. None of the hospital or
community health centers formally offered HBC
services for PLWH. Although some improvements
have been implemented by the government, partici-
pants viewed the HIV-related services as insufficient
compared with the growing number of PLWH and those
who were at risk. One key participant stated:
In this sub-district region, there is no health care
service providing HIV testing and ART. As
a consequence we have to travel to the down-
town hospital, which is quite far, and be placed
on a long list to get service. Meanwhile, I know
there are many people at risk here [who] need to
be tested, and some of them are HIV positive
and need ART. So, I think the availability of
health care service is still insufficient to cover
all PLWH and people at risk, particularly those
who live far from the downtown. (K7)
Health care providers. Most issues about health
care providers caring for PLWH were raised by health
care provider participants who attended focus group
discussions. The issues included lack of proper
training for health care providers, which influenced
levels of knowledge and attitudes in caring for
PLWH. In addition, there was disruption in the
continuum of care between hospitals and community
setting, and limited safety protection when caring for
PLWH. In some cases, HIV-infected patients were
required to follow-up after hospitalization. Because
there was no official in charge to perform this job,
the number of patients lost to follow-up at a top
provincial HIV clinic in the city was significant
(12%). According to the existing health care system,
community health centers should participate in
ensuring that all residents, including PLWH, in their
working areas have access to health care services.
However, health care providers in health centers often
find it difficult to identity PLWH in the community.
This is partly because PLWH prefer to hide their
HIV diagnoses. However, health care providers in
hospitals were also reluctant to disclose their HIV-
infected clients to community health care providers
because of confidentiality issues. The existing
referral system, which usually shares care provision
between hospital and community health center,
does not seem to work well when applied to
PLWH. As one health care provider participant said:
We are health providers in the community health
center, most of the time we do not know about
PLWH who need follow-up care in our region
unless the hospitals officially inform us about
it. Perhaps it is because of the issue of confiden-
tiality, PLWH like to hide their HIV status to
other people, including health care providers in
the community health center where they reside.
It makes it difficult for us to provide care for
those people. (G14)
Community-based care activities. Key and
general participants identified several community-
based activities available in the community. NGOs
working for HIV, self-help groups, residents care
for PLWH (Warga Perduli AIDS/WPA), and faith-
based organizations (FBOs) might contribute to
care for those with AIDS. FBOs are actually a type
of NGO that basically operate on the basis of reli-
gious missions. In Indonesia, FBO usually has a large
number of followers and/or members who are spread
out throughout the country. To date, 11 NGOs that
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Ibrahim et al. / Home-based Care for HIV-Infected People
work with HIV-infected people were recorded at
the Bandung AIDS Control Commission (2007).
However, only a few of these actively participated
in HIV prevention and care. NGOs play an important
role in outreach, counseling, and support for PLWH.
Most NGOs were funded by foreign donors who sup-
ported particular programs within a period of time. A
major problem was that there was no guaranty from
the donors about sustainability of funding support
after the program term was completed. One general
participant who is a deputy program manager of an
NGO said:
We have been working on an outreaching and
counseling program since 2004. Based on the
job contract with a foreign donor, it has been
extended until June 2008. We don’t know yet
about the continuity of our work after the
program is terminated. I noticed that the funding
body has considered the outreaching program to
be sufficient. It means that our work will be dis-
continued. This is a big problem for us as we are
depending on the foreign donor. (G25)
Self-help groups have been established by PLWH
to share experiences and empower themselves in
dealing with illness-related problems. The groups
might be affiliated under a particular NGO or operated
independently. Resident care for AIDS (WPA) has
been in place since 2004, mediated by an NGO and
a foreign donor. WPA was officially launched by five
villages; however, only one of those was active when
this study was conducted. Although Bandung is
known as a religious city and many religious-based
organizations flourish there, only two FBOs were re-
ported to have shown concern about HIV infection,
namely the Fatayat NU (Women’s Division of Nahda-
tul Ulama, the largest Indonesian Muslim organiza-
tion) and the Catholic Pastoral of Borromeous. Little
was known about the involvement of FBOs in HIV
prevention and care in the Bandung region. The signif-
icant role of community-based care activities for
PLWH was acknowledged by family caregiver partic-
ipants. As one of them expressed:
I am very thankful to the NGO that facilitated
my daughter to get an HIV test and get access
to the health care service. It is very difficult
for us, the family, to deal with this situation.
We didn’t know clearly at the beginning what
233
was going on with my daughter when her health
condition dramatically deteriorated. We also
had financial constraints to take her to hospital.
It was fortunate to have assistance from an
NGO, so my daughter could get medical treat-
ment, although it was quite late. (G2)
Barriers in accessing health care services and
community resources. All key participants in this
study said that financial constraints were barriers to
accessing health care services related to HIV.
Although the services might have been free of charge
for ART, they still had to pay for related medical
diagnostic tests and also for other drugs. As one
key participant said:
Although ART is free of charge nowadays, I still
need to spend money for transportation, regis-
tration, and occasionally for a blood test and
for X-rays. To me, not having a fix[ed] income,
it is a big barrier to visit the clinic. The long
queues in the clinic also make me really very
tired and bored, that is why I’m reluctant to
come to the clinic. (K4)
For those who lived far away from the hospital, the
cost of transportation was also a real problem. Three
key participants said that long queues to get service in
HIV clinics, particularly those who used government
health insurance for the poor (Jamkesmas/Askeskin),
had hampered their willingness to visit the clinic as
required. Lack of a family member or someone who
could escort them to the clinic was also a barrier.
Patients were afraid of meeting someone they knew,
as then their HIV status might be detected. Addition-
ally, two key participants pointed out that the lack of
skilled health HIV-care providers in some centers
made them reluctant to go to the health center.
Types of Care and Support Needed by PLWH at
Community Home-based Settings
All key participants explicitly articulated the need
for HBC, particularly for those who were very ill and
could not be admitted to the hospital for several
reasons. Most participants stated that when they
were sick, their mother or wife usually cared for
them at home before or after admission to hospital.
Participants acknowledged the family as the main
 Author's personal copy
234 JANAC Vol. 22, No. 3, May/June 2011
source of support, in addition to friends and NGOs.
Nevertheless, participants recognized that specific
types of care needed to be incorporated into HBC.
These could be classified into basic nursing care,
self-care and symptom management, psychosocial
and spiritual care, care during dying and death, and
informational support and capacity building. These
are described later in the text.
Basic nursing care. Family caregiver participants
stated that basic nursing care was particularly needed
for PLWH who were unable to care for themselves
because of serious conditions and who were highly
dependent on the caregiver for basic daily needs.
The basic nursing care needed included preparing
foods and feeding the sick, bed bathing, bed making,
nail care, hair and mouth care, skin and wound care,
universal precautions, handling body fluids and
contaminated items, bleaching soiled linens, and
general house and environmental health. One family
caregiver participant stated:
Her condition was getting worse after having
been discharged from the hospital. During the
days she just lay down on the bed, not wanting
to eat, even open her mouth for drinking or talk-
ing. . As her mother, I have done the best to
care for her as much as I could do, although
in some instances I am not sure whether or not
it was correct what I have done. I think family
caregivers need to be trained to provide basic
care such as bed bathing, wound care, handling
body wastes, and contaminated linen, etc., so
that we could do that correctly and safely. (G2)
Self-care and symptom management. Key partic-
ipants stated that health care was needed not only by
PLWH who were seriously ill, but also by those who
still looked healthy. Self-care strategies, such as
maintaining personal hygiene, consuming sufficient
nutrition and water, maintaining a balance between
activities and rest, stress management, medication
adherence, and seeking help, were considered to
be necessary by key participants. In addition, key
participants also indicated the need to manage
symptoms such as pain, fatigue, nausea and vomiting,
insomnia, diarrhea, and coughing, which were fre-
quently experienced by PLWH at home. One key
participant said:
Yeah, most of our friends who [are] taking ART
don’t know how to deal with side effects of the
drugs and how to manage HIV-related symp-
toms such as weakness, nausea, and difficulty
to sleep. It would be helpful if there were
a home-care nurse to visit us and teach us about
those matters. (K11)
Psychosocial and spiritual care. All key partici-
pants said that their first responses when diagnosed
with HIV were shock, hopelessness, and despair,
because of the perception that HIV was an incurable
illness that led to death. Fear of rejection by their fami-
lies and communities contributed to these feelings. Key
participants needed empathy, acceptance, and emotional
support from surrounding people to get through the
illness. Spiritual support was viewed by key participants
as essential because most of them felt hopeless about the
future. Participants acknowledged that hope derived
from cultural and religious beliefs and values was a valu-
able coping strategy for adverse conditions related to
HIV. One key participant expressed:
Sometime I thought I don’t want to continue my
life . I wish to stop taking ART since I [am]
concern[ed] so much about my wife who aban-
doned me. Yet my mother always reminds me
and advises me to be patient and steady in facing
the test from God. Actually at the moment I
really need psychological and spiritual supports
especially from my dear wife. Unfortunately she
abandoned me and choose[s] to stay with her
parents until now. (K10)
Care for dying and death. Three family caregiver
participants had a family member who was in the
stage of dying. They expressed the need for appro-
priate care and support for the PLWH and the family.
Two family caregivers shared their experiences when
they did not completely understand about caring for
the dying person, except to offer prayer and
emotional support. When the family member died,
relatives and surrounding people were afraid to get
close to the body, such that no one was willing to
care for the body, as they would have done in case
of a normal person’s death. Family members clearly
indicated the need to learn about the proper care for
PLWH during the final stages of life from a competent
provider. One family caregiver said:
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Ibrahim et al. / Home-based Care for HIV-Infected People
Previously I just told people that my son is sick
because of lung TB. Yet, someone knew that my
son died because of AIDS and passed the infor-
mation to my neighbor and relatives. As a result,
neighbors and relatives were reluctant to get
close to the dead body. [I didn’t know] what
should I do to care for the dea[d] body and tried
to look for someone who could help us. Fortu-
nately, a group of people headed by an Ustadz
(Muslim leader/teacher) came to help us to ritu-
ally care for the dea[d] body in accordance with
our religious belief. I think we really need those
people who care for the dying and dea[d] AIDS
person. Otherwise community people have to be
trained to do so. (G6)
Informational support and capacity building.
Both key and general participants expressed the
need for particular information which might help to
deal with the illness or to care for those who suffered
from the illness. Apart from general information
about the illness, they also needed clear information
about preventive measures, healthy life styles, avail-
able networks of support for PLWH, proper nutrition,
medication side effects, HIV-related illnesses, and
other knowledge about basic nursing care. All partic-
ipants clearly indicated the need to build capacity to
care for PLWH. One community leader participant
expressed his concern about this issue when he said:
Not all people in our community have enough
knowledge about HIV and AIDS. That may
affect the people’s perception about HIV and
AIDS and care for those who are HIV infected.
How [can] people [be] involve[d] in prevention
and control of HIV if their understanding about
it is lacking? We need clear knowledge about it
and skills to strengthen our capacity in handling
this HIV epidemic. (G23)
Discussion
The findings of this study highlight the lack of
health care services available in the Bandung region
to respond to the high demand for health care for
PLWH. In accordance with the increasing number of
PLWH in the region, the quantity and quality of health
care needs are also increasing. The lack of health care
235
facilities offering HIV care services lead to most
PLWH seeking care in a particular HIV clinic, which
served as a primary referral source in the region.
This condition was noted to be associated with
a high incidence of loss to follow-up (Wisaksana,
van Crevel, Kesumah, Sudjana, & Sumantri, 2009).
Thus, the problem can only be addressed by establish-
ing more HIV services, especially outside of hospitals.
It is clear that universal access to a comprehensive
care package as outlined by the World Health Organi-
zation cannot be simply met by improved medical
treatment alone. It also requires improvement in other
services such as counseling, prevention, reduced
stigma, and community HBC (Williams, 2001).
The inadequate number of qualified health care
providers in HIV services has hampered the delivery
of quality care for PLWH, as indicated in this study.
Staff shortages have been a major challenge in
providing community HBC services for PLWH in
rural areas in another setting (Shaibu, 2006), and
this can also affect the continuum of care for
PLWH in hospitals and community health centers,
and at the family level. In addition, the knowledge
and skills of health care providers need to be updated
to support quality care in all areas including HBC
provision. Campbell (2004) reported that training
for HBC providers was a major component of HBC
implementation. Our findings suggest the types of
training needed by the participants.
The availability of community-based activities
related to HIV was an important resource in establish-
ing comprehensive care for PLWH. These activities
could be useful partners for health care providers
when developing and implementing a community
HBC program. However, as shown by Uys (2003), in
many cases HIV care at the community level often
came from NGOs with no or little funding support
from the government. Without proper coordination,
this situation can compromise efforts to identify
HIV-infected individuals and mitigate the effect of
the HIV epidemic. Health care providers are further
challenged to strengthen the capacity of potential part-
ners and work together to achieve the goal of care
for PLWH. Families, health volunteers, NGOs, and
community leaders should be partners and they should
be empowered to develop effective community HBC.
Barriers to access health care services found in this
study were similar to the previous studies (Irwanto &
 Author's personal copy
236 JANAC Vol. 22, No. 3, May/June 2011
Moeliono, 2007; Posse, Meheus, van Asten, van
der Ven, & Baltussen, 2008). Long distances to the
clinic, embarrassment, complicated procedures to get
treatment, limited resources, and financial constraints
were reported as the most frequent barriers to access
to proper health care services.
Participants expressed the need for care in particular
areas, including basic nursing care, self-care and
symptom management, and care for dying and death.
They also indicated the need for informational support
and capacity building. PLWH who are still healthy can
benefit from health promotion and medication adher-
ence offered in HBC; those who are ill or dying can
benefit from symptom management and palliative care.
HBC is appropriate, particularly in eastern cultures,
because most sick people prefer to be cared for at
home; 70% to 90% of all illness care takes place at
home (World Health Organization, 2002). Effective
HBC has shown positive outcomes on the quality of
life, the acceptance and disclosure of an HIV status,
and medication adherence (Ncama, 2007; Weidle
et al., 2006).
Conclusion and Recommendations
Our findings suggest that although health care
services for PLWH were available in Bandung,
barriers often hampered the access. Existing health
care services seemed fragmented and lacked a specific
focus in the continuum of care. HBC offers a valuable
approach to bridge the gap of care between hospitals,
health centers, the local community, and the family.
Health care providers are challenged to strengthen
the role of family caregivers and other community
services to work collaboratively in addressing HIV-
related prevention and care concerns. Thus, increasing
the capacity of the family and community to provide
HBC is imperative to the provision of comprehensive
care for PLWH in Indonesia. Training and knowledge
dissemination through interactive dialogues are key
elements to develop effective models of community
HBC for PLWH.
Study Limitations
This study captured qualitative data from a small
sample size in a limited geographic region and does
not represent the general population in the study
setting. Writing this report in English created extra
problems. Some words in the local language could
not be properly translated into English. The researcher
tried to find words that came close to the original
expressions and also sought advice from English-
speaking natives. However, HIV is a novel disease
that had such a strong effect on the language used by
those who have been emotionally involved with it,
that it was often difficult to convey the exact meaning.
Clinical Considerations
 There is a need for HBC to ensure continuity of
care for PLWH in developing areas with
limited resources.
 The community nurse can play a significant
role in the coordination and management of
HBC services, in close collaboration with the
family and other stakeholders such as NGOs
and community and/or religious leaders.
 The families of PLWH can be a center for HBC
intervention if they have been educated to
provide basic care and support.
 Knowledge dissemination and education are
essential components of developing an HBC
system.
Disclosures
The authors report no real or perceived vested inter-
ests that relate to this article (including relationships
with pharmaceutical companies, biomedical device
manufacturers, grantors, or other entities whose prod-
ucts or services are related to topics covered in this
manuscript) that could be construed as a conflict of
interest.
Acknowledgments
The authors thank IMPACT, a project funded by
the European Union, for financial support of this
 Author's personal copy
Ibrahim et al. / Home-based Care for HIV-Infected People
study, as well as to all research participants and
research assistants. They also thank Ir. Sikke A. Hem-
penius for improving the readability of the paper and
the reviewers for their valuable comments. They also
thank Dr. Lucy A. Bradley-Springer for editing this
paper. KI designed and managed the study and wrote
the manuscript. HH assisted in data collection and
analysis. LP supervised the entire work and improved
the manuscript. All authors read and approved the
final manuscript.
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