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QUALITY OF LIFE OF PEOPLE LIVING WITH HIV IN KOTA KUPANG, EAST NUSA TENGGARA,
INDONESIA
*Inriyani Takesan
Email: inriyanitakesan@gmail.com



ABSTRACT
Introduction: Since antiretroviral therapy (ART) support people living with HIV (PLHIV) to
have longer life, the need to increase their quality of life also become important. Limited
study has been conducted using World Health Organization quality of life HIV (WHOQOL-
HIV) BREF in Kota Kupang. Objective: This study assessed the quality of life of PLHIV in Kota
Kupang. Methods: This is a descriptive study. 33 PLHIV was visited in their home randomly
among PLHIV in Kota Kupang, and WHOQOL-HIV BREF instrument was used. Results: The
mean scores in 3 domains namely psychological (14,4); social relationship (14,3); and
physical health (14,1) were higher than environment domain (12,7). Conclusions:
Environment domain is lower than other domains indicate not enough money for daily
living, poor living condition, health service time/procedure which is considered as loo long
and uncomfortable, and also because of stigma and distrimination.
Key words: Quality of life, PLHIV, HIV, WHOQOL-HIV BREF


INTRODUCTION
By 2012, there were 35.3 million
people worldwide living with HIV; 2.3
million people were newly infected in
2012. Someone with recently acquired
HIV infection has nearly the same life
expectancy as that of an HIV-negative
person by antiretroviral therapy
(Nakagawa, May, and Phillips, 2013).
Therefore, quality of life of people living
with HIV/AIDS (PLHA) is associated with
ART (Tran, 2013). By virtue of the success
of ART, HIV has evolved into a chronic
disease in which the typical complications
of AIDS are no longer the dominant
problem in many parts of the world; then
basic discovery, early clinical investigation,
and the establishment of large
collaborations that aim to tackle HIV
persistence during ART are needed.
(Deeks, Lewin, Havlir, 2013). In the larger
countries of Asia, including Indonesia,
access to ARV (ARV availability) remains
very restricted, and current programmes
are hindered by serious management
problems, sometimes leading patients to
abandon treatment (Kiat, Tim,
Phanuphak, 2004).
WHO identifies Quality of Life as
individuals perception of their position in
life in the context of the culture and value
systems in which they live and in their
relation to their goals, expectations,
standards and concerns. Kota Kupang
which include in epidemic level of
HIV/AIDS, the number of People Living
with HIV (PLHIV) is getting increased. Until
March 2013, there were 229 PLHIV and
145 people living with AIDS, and in
February 2014, it is fastly increased to 428

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PLHIV and 150 people living with AIDS.
This is the first study to find out the
quality of life of PLHA in Kota Kupang.

METHODS
This descriptive study involved 33
people living with HIV (PLHIV) whose
visited in their home randomly among
PLHIV in Kota Kupang. Quality of life of
people living with HIV was assessed by
using WHOQOL-HIV BREF, consists of 26
items, each item using 5 point likert scale
which will be distributed into four domain
namely: physical health, psychological,
social relationship, and environment.
Physical health includes activities of
daily living, dependence on medical
substances and medical aids, energy
and fatigue, mobility, pain and
discomfort, sleep and rest, work
capasity.
Psychological includes bodily image
and appearance, negative feelings,
positive feelings, self-esteem,
spirituality/ religion/ personal beliefs,
thinking, learning, memory and
concentration.
Social relationship includes social
support, personal relationships, and
sexual activity.
Environment includes financial
resources, freedom, physical safety
and security, health and social care,
home environment, opportunities for
acquiring information and skills,
participation in and opportunities for
recreation/leisure activities, physical
environment (pollution/ noise/
traffic/ climate), and transport.

Data entry and statistical analysis
were using the statistical package for
social science (SPSS) software, version 21.
The score ranged from 4 (minimum) to 20
(maximum) with higher mean score
showing a better QOL. In this study,
Indonesian version of WHOQOL-HIV BREF
instrument showed good reliability for
domains in Crobach Alpha coefficients
(0,67 - 0,80).

RESULTS
The respondents age is ranged
beetween 25 to 54, with mean score of 37
(standard deviation 7,7). To access the
house of 75% PLHIV, and to meet them,
researcher was accompanied by their
companion or pendamping from
kelompok dukungan sebaya (KDS)
Perjuangan because PLHIV feel
uncomfortable to meet stranger
(researcher) and talk about their disease
and their condition. Their companion is
also HIV infected people who usually help
other PLHIV to motivate and sometimes
taking their drugs when PLHIV couldnt
help themselves (e.g. because they have
not enough money for transport). While
25% PLHIV are members of Jaringan
Orang Terinfeksi HIV (JOTHI) in East Nusa
Tenggara, and access to their house and
to meet them, by rely on their group
leader permission. More information and
story related to PLHIV quality of life is
gathered (one by one) when visiting
PLHIVs home rather than meet them in
VCT waiting room nor after their meeting
in group.




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TABLE I. DISTRIBUTION OF MEANS,
STANDARD DEVIATIONS (SD), AND
CRONBACHS ALPHA OBTAINED FROM
THE WHOQOL-HIV BREF BY DOMAIN

The mean scores in domain of
psychological, social relationship, and
physical health were high, but for
environment was low.

DISCUSSION
Mean score of domain of physical health
(14,1), psychological (14,4), and social
relationship (14,3) are high. Although this
domain is considered as high but it is in
intermediate level when it transformed
from 4-20. In physical domain,
respondents are feeling fit or healthy,
have vitality to do their work in daily living
but the strength will drastically fall when
they worry too much, about they have not
enough money to pay their needs, for
their children, to go to hospital for taking
drugs, and especially when people around
them threat them unfair when people
know their status are HIV infected.
Environment domain is low similarly
to study conducted to assess quality of life
of people living with HIV and AIDS in
Nigeria (14,0). They suggest this low mean
score because of poor living conditions of
people living with HIV and AIDS (Odili,
Ikhurionan, Usifoh, Oparah, 2011).
In this study, lower environment domain
indicates not enough money for daily
living, poor living condition, health service
time/procedure which is considered as loo
long and uncomfortable, and also because
of stigma and distrimination. In these last
two months, there are some stigma and
discrimination cases found: a man with
better condition because he was taking
antiretroviral therapy (ART) was finally
dead because his family is not accept him
as PLHIV, for this reason his death his
body threaten unfair even since from the
hospital mortuary. The other case
happened on 6
th
May 2014, when a family
a woman her husband and her child were
avoided, people wont buy or touch
anything like food or asking them to
involved in leisure time together until
theyre kicked off from the community so
they have to move because people think
they are HIV infected even she was not
telling them about her positive status. In
other cases, most women living with HIV
confess that they are defamed relate
them to bad morality, because HIV still
assumed as curse in the community as
well. This may lead to reluctence for early
detection. In the same way, most
respondents are hiding their status
because they might lost their job as
teacher. Similarly, HIV positive sex
workers are not able to refuse guest who
do not want to use condom.
Every months every PLHIV in Kota
Kupang has to take drugs in Prof. Dr. W.Z.
Johannes hospital. Most of respondents
prefer to register as general patient and
has to pay Rp. 17.500,00 rather than
register as HIV infected person or by using
health insurance or refferal card because
Domain Mean (SD) Cronbachs
Alpha
Physical
health
14,1 (2,7) 0,8
Psychological 14,4 (3,2) 0,67
Social
relationship
14,3 (3,0) 0,68
Environment 12,7 (2,7) 0,74

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they consider it takes time and the
procedure is too long and uncomfortable
with their status as positive HIV infected.
On the other hand, they have not enough
money for transportation. In this situation
stop taking drugs could lead to serious
disease and even death.

Limitation of this study
Sample size is realtively small. All sample
are taking ART which indicate to higher
physical domain. Further study about
quality of life of people living with HIV in
other area in East Nusa Tenggara is
necessary to be assessed.

REFERENCES
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