Understanding Pediatric HIV Care Management to Improve the

Quality of Care for Children Infected with HIV in Indonesia

Nuzul Qur’aniati

, Linda Sweet

, Dean Whitehead

, and Alison Hutton

Faculty of Nursing, Universitas Airlangga, Surabaya, Indonesia 60115

Flinders University, Adelaide, South Australia, Australia

Keywords: Care Management, Children, HIV.

Abstract: The number of children infected with the Human Immunodeficiency Virus (HIV) has cumulatively increased

by 68.5% during the period 2010 to 2015 in Indonesia. Due to the need for lifelong treatment to minimize its

impact, HIV is considered a chronic disease. With the change to living with a chronic condition, children with

HIV may need to receive coordinated care management across the spectrum of their disease from health

professionals, and, particularly, nurses. Studies from sub-Saharan countries have shown several programs that

have been implemented to manage childhood HIV epidemics. However, gaps in the implementation of

programs still exists, due to family contexts, disclosure of HIV status, stigma, discrimination, and health

professional capacities. This presentation will describe the programs for the provision of care for HIV infected

children in sub-Saharan Africa and their identified barriers and challenges. From the review findings, future

research will be proposed for which similar advances can be implemented in Indonesia as part of improving

the quality of care for HIV positive children.

1 BACKGROUND

The number of children living with the Human

Immunodeficiency Virus (HIV) is becoming more

prevalent. In 2013, almost 190,000 children and

adolescents, infected with HIV, lived in the Asia

region (Saad, Peck-LeongTan, & Subramaniam

2015). Globally, in 2015, the United Nations Program

on HIV/AIDS (UNAIDS) estimated 1.8 million

children aged under 15 years old were living with

HIV, 400 children become newly infected daily, and

110,000 children were died from Acquired Immune

Deficiency Syndrome (AIDS)-related diseases

(UNAIDS 2016a). The report from Global AIDS in

2014 stated that 4.9 million people were living with

HIV, with Indonesia ranked third highest (14%) after

India (43%), and China (17%) (WHO 2016). In

Indonesia, new infections of HIV among children

(10–14 years old) have increased by 63% since 2010

(UNAIDS 2016a). The report by the Ministry of

Health stated that the number of children infected

with HIV aged below 19 years had cumulatively

increased from 1,472 in 2011 to 2,252 in 2015 (MoH

2016).

For children living with HIV (CLWH), their lives

are negatively affected, so they may need to receive

coordinated care management across the spectrum of

their disease from health professionals, nurses, in

particular. Rochat, Mitchell and Richter (2008)

indicate that CLWH have complex problems related

to the biological, psychological, social, economic,

and environmental conditions in their lives and have

difficulty accessing healthcare services. For example,

hospitalized children with HIV are susceptible to

discomfort and stressful economic and social

circumstances with their disease, stigma regarding

HIV, over-burdened hospital facilities, and a lack of

specialized staff on the ward (Richter, Chandan &

Rochat 2009). On the other hand, numerous studies in

a sub-Saharan context have discussed how to manage

HIV epidemics for CLWH (Achema & Ncama, 2016;

Luyirika et al., 2013; Mbaye et al., 2009). Therefore,

this paper aims to describe the provision of care for

HIV-infected children and their identified barriers

and challenges. Furthermore, potential future

research in Indonesia will be outlined to improve the

life quality of children who are HIV positive.

Qur’aniati, N., Sweet, L., Whitehead, D. and Hutton, A.

Understanding Pediatric HIV Care Management to Improve the Quality of Care for Children Infected with HIV in Indonesia.

DOI: 10.5220/0008331507070711

In Proceedings of the 9th International Nursing Conference (INC 2018), pages 707-711

ISBN: 978-989-758-336-0

707

2 METHODS

This study utilized an integrative review. This review

focused on the provision of care for CLWH

manuscripts published between 2009 and 2016.

Manuscripts were identified using the following

databases: Medline OVID, PsycInfo, Sage Informit,

Google Scholar, and Taylor & Francis online. The

search options used were Boolean/ phrase and smart

text searching with a combination of the following

key words: child or children or childhood or pediatric,

nurse or nurses or nursing, holistic or psychosocial or

social or patient-centered care, HIV, and hospital.

Narrower searches resulted in fewer reports. The

author then extended the key words: children, HIV,

comprehensive care. The author obtained 110

articles, and this was condensed to 11 primary

research manuscripts according to the inclusion

criteria: written in English and discussed the

provision of care for children with HIV. Most

manuscripts were found using Google Scholar and

Taylor & Francis online. Initially, the author wrote a

synopsis of each article onto a table containing the

author(s), year and location, research questions and

the aim of study, methodological design, and major

findings and then continued with the critical appraisal

process for quantitative and qualitative manuscripts.

3 RESULTS

Of the 11 included manuscripts, the results were

grouped into two over-arching themes: the provision

of care for HIV infected children and identified

barriers and facilitators to healthcare.

3.1 The Provision of Care for HIV-

Infected Children

Children infected with HIV require comprehensive

care, which does not only require access to

antiretroviral therapy (ART), but also to supportive

care to ensure they meet their optimal quality of life.

3.1.1 Access to Antiretroviral Therapy

(ART)

Access to ART crucially reduces children’s

morbidity and mortality. UNAIDS (2016) found that

access for children (aged 0–14) to ART increased

dramatically from 0% in 2000 to 50% in 2005.

However, according to the UNICEF (2016) report, of

1.8 million children under the age of 15 living with

HIV, only half were receiving treatment. A study

from the South Asia region comprising Afghanistan,

Bangladesh, Bhutan, India, Maldives, Nepal,

Pakistan, and Sri Lanka argues that the uses of text

messaging gateways for medical appointments and

ARV pick-ups are alternative strategies implemented

to support therapy adherence for CLWH.

3.1.2 Supportive Care

Children with HIV not only need ART, but also

require supportive care. This is an important finding

and according to Achema and Ncama (2016) holistic

supportive care, including nutritional, educational,

and psychosocial support given by families,

caregivers, and nurses is essential for CLWH to

support the achievement of a better quality life. As

well as nutritional, educational and psychosocial

support, sexual reproductive health and circumcision

positively prevent children from HIV transmission.

Children with HIV require education for

awareness and reproductive health to prevent

themselves from HIV or other sexually transmitted

infections (STs) before they become sexually active.

A qualitative study in South Africa found that young

children aged 10–14 years did not have adequate

knowledge about sexual and reproductive health

(Vujovic et al., 2014). Vujovic et al. (2014) state that

sexual and reproductive programs for adolescents are

rare. Within the same literature, children reported that

they needed separate clinics to adults, so they can ask

about physical development, condom use, pregnancy

and how to avoid pregnancy, menstruation, and

hygiene (Vujovic et al., 2014). Besides condom and

contraceptive injections being available from the

health service, children also said that they needed

friendly health providers with whom they could talk

comfortably (Vujovic et al., 2014).

Male circumcision is another cost-effective form

of supportive care, which effectively reduces the risk

of sexual transmission from males to females.

Modeling studies (2009–2011) from 14 countries:

Botswana, Ethiopia, Kenya, Lesoto, Malawi,

Mozambique, Namibia, Rwanda, South Africa,

Swaziland, Uganda, The United Republic of

Tanzania, Zambia, and Zimbabwe found that 80% of

males aged 15–49 were circumcised, which prevented

the occurrence of new HIV infections by 3.4 million

(Sgaier et al., 2014). Within 15 years, male

circumcision saved up to US$ 16.5 billion (Sgaier et

al., 2014). Therefore, the voluntary male

circumcision program can be part of the HIV

prevention strategy. To implement the program,

circumcision training for health professionals or

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

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providing health education for families requires

management. For example, nurses in 15 priority

countries such as Sudan have been trained to provide

voluntary male circumcision services (UNAIDS

2016b).

3.2 Barriers and Facilitators to

Healthcare

As well as the provision of care, the implementation

of care for HIV positive children have barriers and

facilitators, including low socio-economic and

parental education, disclosure of HIV status, stigma

and discrimination, and health professional

capacities.

3.2.1 Low Socio-Economics and Lack of

Parental Education

Low socio-economics (LSEs) and lack of parental

education are barriers to healthcare seeking behavior.

McGrantham-Mc Gregor et al. (2007) cited in Rochat

et al. (2008) stated that poverty in sub-Saharan Africa

was a platform for HIV and AIDS, which were linked

to malnourishment, poorly developed health and

education, and a distressed care environment,

requiring attention. This information is consistent

with known facts from sub-Saharan Africa, where it

is reported that adolescent girls face higher risk of

HIV infection due to their life circumstances, i.e.

living in poverty, malnourishment, LSE problems,

and poor-quality education (UNICEF 2016b).

Moreover, poverty, economic problems, and large

family size contributed to dangerous survival

strategies such as transactional sex, and children’s

insecurities such as food, shelter, school fees, and

other school supplies (Betancourt et al., 2012).

Kidman and Heymann (2016) support that aspects of

vulnerability of HIV-experienced caregivers and

children infected with HIV are linked to poverty, food

insecurity, inability access to school, ill health, and

limited access to safety. Therefore, strengthening

economic problems and developing family health

education are important to ensure adequate care for

children with HIV. Betancourt et al. (2012) assert that

providing financial assistance positively supports

vulnerable children and their families.

3.2.2 Disclosure of HIV Status

Disclosure of HIV status is a big challenge and still

exists. In 2016, most people living with HIV

(PLWHA) did not know their status (UNAIDS

2016a). As stated in UNAIDS (2016b), 14.5 million

out of the 36.7 million people living with HIV do not

know their status. Parents or caregivers tend to silence

and protect their children from their status. This

mystifies their transition into adolescence (Bernays et

al., 2014). However, Bostwana has developed the

disclosure model as part of Botswana’s National HIV

care and treatment guidelines. The program provides

a friendly, supportive environment building on

positive living with HIV, based on a counseling

approach at regular clinic visits and adherence classes

(Lowenthal et al., 2014). The adherence classes are a

group learning session for children who initiate and

start taking antiretroviral drugs assisted by clinic

nurses (Lowenthal et al., 2014) so could enhance

adherence of therapy.

3.2.3 Stigma and Discrimination

Stigma and discrimination negatively impact

healthcare outcomes for CLWH. Stigma touches on

the loss of dignity leading to difficulties in epidemic

control (Indonesia, 2012). For example, the loss of

Table 1: The gaps for future implementation of research into the provision of care for CLWH in Indonesia.

Research Findings

Potential Research Topics in Indonesia

Key Performance: Access to ART: comprehensive sexual and reproductive health

Children have less knowledge on

sexual and reproductive health;

voluntary male circumcision is an

effective program for HIV

prevention.

Improving sexual and reproductive health for CLWH (practice, barriers and

challenges; strategies to enhance the practice; building knowledge of CLWH;

developing strategies to implement the practice for nurses); transition care for

young children.

Text messaging for ARV pick-up is

effective

How is adherence therapy conducted for CLWH? Strategies to engage

children and families to improve ARV.

Key Performance: Caregiving and HIV

Disclosure model with honest

communication from Botswana

improves the quality care of CLWH

Evaluate the implementation of disclosure status (e.g. barriers and

facilitators); assessing the knowledge and behaviour of health care towards

disclosure-status; strategy to improve the readiness of disclosure (e.g.

communication, model delivery of care); the role of the government in the

support of disclosure due to the implemented decentralization approach.

Understanding Pediatric HIV Care Management to Improve the Quality of Care for Children Infected with HIV in Indonesia

709

education opportunities, denying healthcare, taking

medication secretly, increasing psychological

problems, and less up-take on adherence therapy

(Bernays et al., 2014; Gokengin et al., 2016;

Indonesia, 2012; UN, 2015; Wei et al., 2016).

3.2.4 Health Professionals’ Capacities

The capacities of health professionals positively

support better quality of care for children with HIV.

However, two studies report that the implementation

of HIV care has challenges related to limited health

professional capacities, such as limited training,

providing poor counseling, a lack of referral system

management, faking information on medical records,

and poor logistic management (Adebimpe, 2013).

Furthermore, nurses are more likely to focus on

routines, rules, protocol, and become rigid to cope

with increasing burdens and limited resources

(Richter et al., 2012). Health professionals (nursing,

specialist pediatric training) are unwilling to work

with caregivers and children due to the stress of care

delivery in the wards (Richter et al., 2012). Hence,

hospital bureaucracy, resources, staff rotation, and

nursing shortages give caregivers an imperatively

pivotal role in their children’s care but participate

very little (Richter, Chandan, & Rochat, 2009).

4 DISCUSSIONS

Disseminating results from this review shows a that a

high burden on CLWH still exists. This review

identifies that family context, disclosure of HIV

status, stigma and discrimination, and health

professional practice negatively affect the care of

HIV positive children. CLWH depend on their

families. Since lack of parental education is one of the

barriers to care-seeking behavior, building the

knowledge of caregivers is operationally strategic to

support the quality of care for HIV positive children,

including providing treatment and medicine,

nutrition, and psychosocial care in the home.

Additionally, discussing disclosure of HIV status

within the family is an important factor to support the

effectiveness of treatment. UNICEF (2016c) stated

that disclosure of HIV status requires good and

accurate communication among children, caregivers,

and health providers (UNICEF 2016c). Furthermore,

UNICEF (2016c) stated that CLWH who experienced

stigma, discrimination, and other psychosocial

circumstances need to be empowered to improve HIV

outcomes and to enhance child protection. Lessons

learned from current practice in child protection

reported by UNICEF (2016a) determined that: (1) a

comprehensive framework integrating multi sector's

collaboration will enable positive outcomes on

infected CLWH protection; and (2) empowering

children in all programs will provide better

understanding on their barriers and challenges to

reduce stigma and discrimination. Key lessons from

UNICEF postulate future activities for increasing

girl’s access in secondary education besides

conveying proven programs, for example,

community empowerment, reducing stigma,

discrimination, and marginalization into healthcare

settings.

CLWH do not only require adherence of therapy but

also supportive intervention. However, it is evident in

this review that the capacities of health providers and

the healthcare system are still not optimal as limited

knowledge and skills are indicated along with limited

resources, shortages of nurses, and a poor healthcare

system. It is clear from this review that it is important

to build the capacity of health providers in terms of

providing adequate knowledge such as sexual and

reproduction health for young children and teenagers.

Therefore, this review provided lessons learned from

sub-Saharan experiences, which informed what is

known and what is not known about the provision of

care for CLWH as listed in Table 1. These gaps may

promote or generate a future research project in

Indonesia.

5 CONCLUSIONS

In summary, CLWH experienced barriers when

seeking healthcare. Firstly, CLWH were living in

poverty, which contributed to lack of nutrition,

minimal access to school, growth, and developmental

problems. Secondly, CLWH experience stigma,

discrimination, and disclosure problems, negatively

affecting their health outcomes. Due to existing

problems, CLWH do not only require ART but also

need supportive care. Moreover, health professionals

should have good capacities to support children with

HIV. Therefore, critical action is needed to ensure

that health providers provide good care, support, and

treatment for both children infected with HIV and

their caregivers.

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

710

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