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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 trainingsand knowledge dissemination.

(Journal of the Association of Nurses in AIDS Care,

22, 229-237) Copyright 2011 Association of

Nurses in AIDS Care

Key words: home-based care, Indonesia, need

assessment, PLWH

HIV remains a major public health problem in manycountries. Indonesia is a developing country that facesthe 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,

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 theremight 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, documentinga 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 Researcherof 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.

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 2011 Association of Nurses in AIDS Care
http://dx.doi.org/10.1016/j.jana.2010.10.002http://dx.doi.org/10.1016/j.jana.2010.10.002

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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. Thefollowing 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 participantswere 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.

230 JANAC Vol. 22, No. 3, May/June 2011

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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 notachieved, 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 communityleaders 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 drawnfrom 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

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 (M5

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 completedjunior high school, one had a bachelors degree, and

one had only finished primary school. Participants

had been living with HIV for a period ranging from

6 months to 4 years (M5 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, ninewere 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

(M5 1.5 years).

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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,

CD41T-cell tests, and ART. According to the informa-

tion obtained fromthe 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 orcommunity 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 thegrowing number of PLWH andthose

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 oftenfind 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 healthcenter, 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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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 dont 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(Womens 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 HIVprevention and care in the Bandung region. Thesignif-

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 didnt know clearly at the beginning what

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 stillneed 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 Im 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 governmenthealth 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


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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, althoughin 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 sufficientnutrition 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

dont 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

participantsneeded empathy, acceptance, and emotional

support from surrounding people to get through theillness. Spiritual support was viewed by key participants

as essential because most of them felt hopeless about the

future. Participants acknowledged that hope derived

from culturaland religious beliefs andvalues wasa valu-

able coping strategy for adverse conditions related to

HIV. One key participant expressed:

Sometime I thought I dont 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 facingthe 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 forthe 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 persons 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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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 didnt 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 peoples 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

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 deliveryof 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 HBCimplementation. 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 identifyHIV-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 &


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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 athome; 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 comprehensivecare 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 areessential 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


7/29/2019 1-s2.0-S1055329010001512-main

9/9

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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