Quality of Life and Individual Adjustment of People Living with
HIV/AIDS (PLWHA)
Erni Agustina Setiowati and Anggun Dwi Cahyani
Faculty of Psychology, Universitas Islam Sultan Agung
Keywords: Individual Adjustment, Quality of life, People Living with HIV/AIDS
Abstract: Having a good quality of life is a hope of everyone. Some factors are suspected to affect the quality of life
such as adjustments to family and personal life, interpersonal relationship, and internal factors such as self-
concept. This study aims to examine empirically the relationship between individual adjustment and life
quality of people with HIV / AIDS. The research design employed was correlational quantitative. The
subjects who were involved in this research were 73 people with HIV / AIDS (37 males and 36 females).
The measuring instrument used was Sack Sentence Completion Test (SSCT) to measure family adjustment
problem, self-concept problem, sexual adjustment problem, interpersonal relationship problem and World
Health Organization Quality of Life Bref Version (WHOQOL-BREF) to measure quality of life. Analyzed
using multiple regression, the data showed that problems of family adjustment, adjustment of sexual area,
adjustment of interpersonal relationship, and self-concept problem simultaneously do not correlate
significantly with quality of life. While partial correlation analysis resulted self-concept has significant
correlation with quality of life. It resumed 9.5% of participants experienced family adjustment problems,
12.3% experienced problem with adjustment of sexual areas, and 5.5% experienced self-concept problem.
Their quality of life in average is well and there are no significant differencies between male and female
both in quality of life and individual adjustment.
1 INTRODUCTION
Indonesia firstly found HIV/AIDS in 1987 in Bali. It
has been widespread in 386 districts. The case is
currently at number 13 in the world. In 2015 when
the MDGs (Millennium Development Goals) are
achieved, HIV / AIDS included the third target that
is difficult to realize. According to the opinion of the
Directorate General of Disease Control and
Environmental Health, since 1987 until around June
2014, the total number of HIV infected in Indonesia
has reached 142,950 people and 56,623 are known
to have AIDS (Superkertia dan Astuti 2016).
Individuals who are diagnosed with HIV initially
may experience feelings of fear, anxiety, depression
and even despair. This makes them feel shunned by
the surrounding environment due to infection they
suffered. While socially, people with HIV tend to
get discrimination from society in the form of
rejection, evasion, and also exile. People with HIV /
AIDS are also often associated with negative
behaviors caused by infection, e.g. homosexuals,
prostitution, commercial sex workers, bisexuals, and
the consequences of using drugs with needles.
People affected by HIV / AIDS virus may not be
derived from negative behavior, but can occur due
to blood transfusions and infection during
intercourse (Lubis dan Sarumpaet 2016).
Individual's quality of life closely refers to
human's ideal life or perfect life to be achieved and
desired by every individual. Oucneke & Rubenfire
(Nyamathi dan Ekstrand 2017) stated that the
quality of one's life depends heavily on the
satisfaction of life as the acceptance of life in each
individual. (Calman 1987) suggested that quality of
life is directly related to one's overall well-being
based on experience in life. According to (Stewart
dan King 1994), quality of life is the degree to
which an individual feels happy with an important
choice in his life.
People with HIV / AIDS in everyday life are
required to be able to deal with every problem in
their lives. The problems faced by PLWHA are not
only physically but psychologically, socially, and
economically (Smeltzer dan Bare 2002). The
complexity of the problems faced has an impact on
Setiowati, E. and Cahyani, A.
Quality of Life and Individual Adjustment of People Living with HIV/AIDS (PLWHA).
DOI: 10.5220/0008590304150423
In Proceedings of the 3rd International Conference on Psychology in Health, Educational, Social, and Organizational Settings (ICP-HESOS 2018) - Improving Mental Health and Harmony in
Global Community, pages 415-423
ISBN: 978-989-758-435-0
Copyright
c
2020 by SCITEPRESS – Science and Technology Publications, Lda. All rights reserved
415
the quality of life of PLWHA. Quality of life is a
perception of one's feelings of functional abilities
impaired caused by disease attacks (Fayers dan
Machin 2007). Physical problems experienced by
PLWHIV occur because the immune system
decreases progressively as a source of susceptibility
to disease infection. The social problems
experienced by HIV sufferers are related to the
negative stigma of the environment, affecting the
quality of life that leads to mental, social and
physical health. Quality of life is not only seen from
the function of a person in daily activities, but also a
person's perception of health that can affect his
attitude in the life or quality of a person (Bello dan
Bello 2013).
Quality of life refers to a picture of every person
about a life such as a purpose of life, interpersonal
relationships, self-esteem development, personal
control, intellectual capacity and material (Sarafino
2006). It is also included in the achievement of
individual success in obtaining certain conditions
Mc.Call (Oliver dan Huxley 1997). The more
prosperous and experienced, the easier someone
achieves the goal in certain circumstances, Lehman
(Diatmi dan Fridari 2014). The level of the simplest
quality of human life is the standard and the degree
of goodness and perfection of Schmandt and
Bloomberg (Oliver dan Huxley 1997). It becomes
the achievement of the ultimate goal for an
individual, whereby a person achieves a more
meaningful quality of life by exceeding a certain
purpose.
Kahneman, Diener, & Schwarz (1999) argue that
quality of life is a subjective process of life, which
makes it more varied. Koot & Wallander (2013)
mention there are three components to measure the
quality of life of a person, among others: objective,
subjective, and interests. The objective component is
closely related to the life of a person. The second
component is interconnected with the individual's
judgment on his or her life and circumstances, while
the latter component is seeing that how important an
aspect can affect the life and quality of life itself.
Quality of life is a person's perception of his life
which can be seen from the system of values in
society, the context of the culture, the purpose of
life, the hopes, and the things that become individual
judgments (WHO 2013). In addition Moons,
Marquet, Budst, & de Geest (Aminarista dan
Hadisaputro 2016), it is referred as a condition of a
person seen from several important aspects of his
life.
Based on the World Health Organization of Life
(Bilington 2004) quality of life has 6 domains i.e.
physical health, social relationships, psychological
well-being, independence, environment and spiritual
level. The measurement of quality of life has
suggested merging domain physical health and level
of independence, and merging domain psychological
and spirituality. World Health Organization Quality
of Life (WHOQOL) is then made into an instrument
of World Health Organization Quality of Life Bref
Version (WHOQOL-BREF) where 6 dimensions
can be made again into 4 domains of physical
health, social relationship, psychological well-being,
and environment.
Felce & Ferry (1995) reveals that the aspects of
quality of life are grouped into four major parts i.e.
physical well-being aspects which includes health,
fitness aspects, physical security and mobility. Then,
the next aspect is material well-being which consists
of environmental quality, security, transportation,
ownership, stability, opinions and privacy. The third
aspect refers to social well-being which consists of
one's involvement with society and interpersonal
relationships. The latter is development and activity,
emotional well-being which consists of satisfaction
in the fulfillment of life, affects and mood,
spirituality, the self-confidence and status of a
person.
Power, Lopez and Snyder (WHO 2004) stated
physical health (activities related to daily life such
as fatigue, drug dependence, pain, discomfort, less
sleep and rest and individual work capacity),
psychological aspects (such as self-esteem, personal
or spiritual beliefs, thinking patterns, learning
process, memory, concentration, body image and
appearance as well as positive and negative
feelings), social relation aspects (related to social
support, sexual activity, interpersonal relationships),
and environmental aspects that include safety and
security, freedom, finance, health, care, home
environment, skills, opportunity to participate, and
physical environment i.e. water, climate,
transportation and pollution.
One factor which would affect quality of life is
culture. Quality of life varies affected by cultures
that exist in certain areas (Fadda dan Giuletta 1999).
Another factor is gender. One aged under 40 years
has monthly income of more than 300 USD, having
an education beyond the secondary level, or being
employed has a positive correlation with quality of
life (Yang and Thai 2016), psychosocial and
sociodemographic factors predicted quality of life at
highly active antiretroviral therapy (HAART) on a
year treatment of ARV and financial dependence on
others was the only remaining predictor after
ICP-HESOS 2018 - International Conference on Psychology in Health, Educational, Social, and Organizational Settings
416
controlling the time in samples in Uganda (Stangl
and Wamai 2007).
Psychological factors and income take an
important role in quality of life of PLWHA. This is
in line with the study which was conducted by
Friedland, Renwick and Mccoll (1996) who found
that income, emotional social support, and problem-
oriented and perception-oriented coping are
positively related to quality of life, while tangible
social support and emotion-oriented coping strategy
are negatively related to quality of life. Surprisingly,
severity symptom has no correlation at all.
Furthermore, they explained that close friends
provided most type of support. The study which was
conducted by (Bekele dan Rourke 2013) showed
that perceived social support has significant direct
effect on both physical and mental health mediated
by depressive symptoms on PLWHA in Canada.
This fact a line with the findings of Hou, Chen, Liu,
Lai, Lee, Lee, Chang, Chen, Ko, Shu, and Ko (2014)
on PLWHA in Taiwan i.e. quality of life
significantly has positive correlation with social
support and ARV (antiretroviral) therapy and has
negative correlation with depression and study
conducted by (Asante 2012) showed that social
support was negatively associated with depression,
stress, and anxiety.. In addition, the study which was
conducted by (Manhas 2013) in India showed there
is a significant positive correlation between self-
esteem and quality of life.
Health related quality of life is severely
comprised in people living with AIDS (PLWHA) in
South Africa in stages 3 and 4 and have limitations
in the four domains of mobility, usual activities,
pain/discomfort and anxiety/depression (Hughes and
Jelsma 2004). The finding of (Brett dan Gow 2012)
showed that the quality of life of an individual is
also influenced by the circumstances of the present
and the past. The factors which can affect a person's
quality of life are gender and income. The amount of
income affects lifestyles starting from residence,
living habits, food consumption and psychological
conditions (Khumsaen, Aoup-por dan Thammachak
2012), Age also affects the quality of life. An older
person tends to be better able to evaluate himself for
the better based on previous life experiences,
compared to the young (Alec & Philips, 2014;
Karkashadze & Gates, 2017). The same is true with
education, where the higher educational level the
higher quality of life (Handajani, Djoerban dan
Irawan 2012). Occupation and marital status (Noor
2007) does either. An individual's closeness
relationship has a better quality of life, both
emotionally and physically (Myers dan Diener
1995). The next is hope, the same feelings with
other individuals, and aspirations (O'Connor 1993),
chronic illness has a negative impact from mild to
severe on a person's quality of life which causes
daily activities to be disrupted or altered (Monali,
Amit dan Steven 2006). Based on research results,
Djoerban & Irawan (2012) also stated that the
quality of life is influenced by the physical health
domain of 70.10% and the relationship with others
by 64.44%.
The purpose of our study is to assess quality of
life and individual adjustment of PLWHA and to
examine association of individual adjustment and
quality of life and domain-specific of individual
adjustment and quality of life.
2 METHODS
Two Thousands of PLWHA in Victory Plus
Foundation Yogyakarta were involved in this study
as population. The samples were obtained by
purposive sampling technique. The participants
consisted of 36 women and 37 men with criteria of
ranging from 25 to 57 years old with average age
36.2 years and domiciled in DIY Province. The
participants in this study were PLWHA who are
actively involved in activities organized by the
Victory plus Foundation and have good adherence
for ARV treatment (antiretroviral treatment). The
occupations include a supporter of HIV-infected
peers (members of peer support groups) (5.48%),
private employees and freelancers (56,16%), self-
employed / traders (17.81%), housewives (19.18%),
and farmer (1.37%). The average time period of
having infected with HIV for 2 years, with a range
of time duration infected between 6 months to 10
years. There were 20 participants who are known to
have been infected with HIV for 5 years and among
them 1 person has been infected for 10 years.
The data were collected using quality of life
scale from World Health Organization Quality of
Life Bref Version (WHOQOL-BREF) which covers
the aspects of quality of life (Lingliang, Derson dan
Shuiyuan 2004), among others, health (activities
related to daily life, drug and medical aid
dependence, energy and fatigue, mobility and pain,
sleep pattern and work capacity. The estimated
reliability of life quality scale was α = 0.871. Sack
Sentence Completion Test (SSCT) is used to collect
data related to individual adjustment problems. It
consists of 60 items divided into four main aspects:
family adjustment (12 items), sexual adjustment (8
items), adjustment of interpersonal relationships (16
Quality of Life and Individual Adjustment of People Living with HIV/AIDS (PLWHA)
417
items), and self-concept (24 items). In addition,
semi-structured interviews were conducted on five
PLWHA participants, Vice President of Victory
Plus Foundation, and coordinator of peer support
group.
The data were collected in 3 months from
October to December 2017. The interviews were
conducted on 3 to 5 October 2017. WHOQOL-
BREF and SSCT were administered to 77 people
living with HIV / AIDS. The data were then
collected in three places: Sardjito General Hospital
Yogyakarta, "X" Hotel along with the capital grant
from the Social Service for PLWHA, and Victory
Plus Yogyakarta office.
The 77 participants in this research filled the
data of WHOQOL-BREF, while 75 of them filled
SSCT completely but 4 of them were not, so that
there were 73 data sets which then were analyzed.
Data analysis in this research used regression
analysis and partial correlation.
3 FINDINGS
The descriptive statistic analysis on the measured
data using WHOQOL-BREF and SSCT resulted
below.
Table 1. Score Description of Quality of Life and Individual Adjustment (N=73, male =37, female=36)
Variables
Sex
Mean
Std. deviation
t
p value
Quality of life total
101.04
10.418
Quality of life
male
100.46
10.232
-0.481
0.632
female
101.64
10.718
Physical health
male
23.62
2.762
0.491
0.625
female
23.31
2.734
Psychological well-being
male
31.35
3.545
-0.238
0.813
female
31.56
3.783
Social relationship
male
15.41
2.327
-1.002
0.32
female
15.94
2.267
Environment
male
30.08
3.483
-0.869
0.388
female
30.83
3.902
Individual Adjustment total
19.1
8.369
Individual Adjustment
male
18.3
7.799
-0.825
0.412
female
19.92
8.952
Adjustment to family
male
3.97
2.891
-0.773
0.442
female
4.58
3.805
Adjustment to sexual area
male
2.7
1.884
-0.042
0.967
female
2.72
2.092
Interpersonal adjustment
male
2.27
2.329
-0.355
0.724
female
2.47
2.535
Self-concept
male
9.35
3.765
-0.833
0.407
female
10.14
4.297
Based on t test there are no significant
differencies between male and female both quality
of life and individual adjustment in each specific-
domain.
The norms of categorization based on hypothetic
norm as a whole are presented in the table below:
ICP-HESOS 2018 - International Conference on Psychology in Health, Educational, Social, and Organizational Settings
418
Tabel 2. Score Categorization of Quality of Life
Norms
Categorization
%
103,95< x
Very High
32.88%
86,65< x ≤
103,95
High
63.01%
69,35 < x
≤ 86,35
Fair
4.11
%
52,05 < x
≤ 69,35
Low
0 %
x ≤ 52,05
Very Low
0 %
Total
100%
Furthermore, multiple regression test was
conducted obtaining value R = 0.286 with the value
of F = 1.150 at p = 0.209 (p >0.05). This means that
simultaneously there is no significant correlation
between family adjustment problem, sexual
adjustment issues, interpersonal relation problem,
and self-concept problem with PLWHA quality. The
next analysis was partial correlation by examining
the relationship of self-concept problem with quality
of life by controlling the aspect of adjustment
problems to family, sexual field, and interpersonal
relationship problem obtaining value rx-1y = -0.261,
p = 0.026 ( at los 0.05). This means that there is a
significant negative correlation between self-concept
problem with PLWHA quality of life. Other result
of partial correlation test show that there is no
significant correlation between adjustment problems
to family, sexual field, interpersonal relationship and
quality of life.
Individual adjustment problems obtained from
the measurement using SSCT were known from 73
participants that there are 8 participants who have
problems with family adjustment, 9 participants
have problems in adjustment of sexual area, and 4
participants have problem with self-concept. While
related to interpersonal relations, no participant has
significant problems that impact their daily life.
Family adjustment problem was experienced by
six female participants and two male participants.
The problems interfered the female group among
others are (a) often quarreled in the family for
assuming that the problems she experienced started
from her father who treats her roughly and can not
act as a good head of household, never been cared
by her father and feels jealous when she saw a
happy partner because her married life is hollow (b)
having a father but not feeling the father's role in her
life, the father does not accept her presence and she
lives a fake marriage life, (c) the father treats other
family members rudely so that she makes her escape
by way of changing sex partners (d) ignored by her
father and irresponsible of her family, broken home,
(e) denying father figure in her life, (f) coming from
an unharmonious family, no communication with
mother and father. While the male participants are
known to have problems with the figure of a father
who since childhood is not known, as well as a
father who does not care and irresponsible
eventhough he has a mother who loves him.
There were nine participants who have problems
with the adjustment of sexual area: six males and
three females. The problems encountered include (a)
being unsatisfied in his or her sexual life,
undergoing complicated marriages, and dominant
and abusive wives, (b) blaming all women as unkind
and marriage as impossible, (c) undergoing
meaningless marriage, never being satisfied with the
sexual life, and having a negative view of all
women, (d) having a high sex drive but never
getting satisfaction from their partner, (f) viewing
the relationship with the opposite sex only for sexual
impingement, while the feeling only occurs in same
sex, (g) the mother figure is considered favoritism.
In the female subject group, the problems
experienced were (a) being regretful on and on of
marriage that caused them have HIV infection, (b)
being not interested in marriage because they think
they were false but have very high sexual urges.
There were three males and one female who
have problems related to self-concept that is quite
disturbing their life. (a) They experience very
slumped, sad, and embarrassed with the family
because of having a deviant sexual orientation, (b)
since childhood, they feel not in accordance with
their gender, wanting to be fully women who are
biased to marry and give birth to children, (c) Afraid
to face future because of multiple partners, the
consumption of drugs and infected with HIV, and
(d) feel so guilty to parents that it makes them
difficult to make decisions and act.
4 DISCUSSION
The findings of this study indicate that
simultaneously the problems of individual
adjustment (family adjustment problem, sexual
adjustment issues, interpersonal relation problem,
and self-concept problem) have no significant
correlation with the quality of life of PLWHA.
Partial correlation analysis showed that the self-
concept problem experienced by PLWHA in Victory
Plus foundation is negatively correlated with quality
of life.
Quality of Life and Individual Adjustment of People Living with HIV/AIDS (PLWHA)
419
The quality of life of the participants is generally
in a good category. All participants in the study
generally do not have significant problems that
could interfere with their daily lives related to
interpersonal relationships. They already have good
self disclosure with people around them and have
good peer support (fellow PLWHA), as well as
family communication. This is in line with the
findings of Qiao, Li, Zhou, Shen, and Tang (2016)
who examined the PLWHA in China showing that
quality of life is linked to open and effective
openness of HIV status to partners and open family
communication.
The study by Wani & RS (2017) stated that the
study consisted of a sample of 60 AIDS patients
with the same number of male and female, finding
that males who already had wives have better
quality of life than women who are single, also
receive more social support than unmarried female
patients. The results of this study are reinforced by
the results of research by Simboh, Bidjuni, &
Lolong (Simboh and Bidjuni 2015) that someone in
this life has such problems that require the support
of others in settlement.
Based on the finding of the study by (Jin dan Liu
2015), it is stated that there is no change in the
quality of life of HIV patients after antiretroviral
treatment for 6 months. HIV / AIDS places a heavy
burden not only on their physical health but also
good mental health. Meanwhile, the quality of life of
PLWHA is affected by several factors, such as CD4
count, viral load, social support, spiritual well-being,
educational level, drug users by injection, and
stigma. While the results of the study (Pitt dan Myer
2009)reported otherwise, that antiretroviral therapy
can improve the quality of life of people living with
HIV but with the incidence of clinical symptoms
and complications so as to feel pain and discomfort
due to the side effects of treatment. The effect is
most strongly felt by stage 3 and 4 patients.
Although it can improve the quality of their life, this
treatment takes a long time and requires a group of
observers with a long time to know the improvement
of quality of life.
The World Health Organization (WHO) also
stated that healthy condition is not only free from
physical illness but also the achievement of
qualified well-being. Anderson, Pramudho, & Sofro
(2017) argued that quality of life can be interpreted
as a person's perception of the cultural context of
their cultural values of residence in relationships and
aims, hopes, and cares for physical health,
psychology, independence, social relations, personal
beliefs, and the environment.
There are some factors that may affect the
process of antiretroviral therapy, as in the results of
the study by Sugiharti, Yuniar, & Lestary (2014)
that there are 9 out of 11 people with HIV / AIDS
who have a level of ARV treatment adherence 95%,
factors that play an important role including family
support, peer support, HIV-caring communities, and
factors that come from an individual. In addition to
the factors that need to be taken into account, there
are also factors that can inhibit the antiretroviral
treatment, such as saturation when continuously
consuming drugs, side effects caused by drugs,
negative stigma of the community and the cost of
treatment.
Based on findings in this research there is no one
has problems in adjustment of interpersonal
relationship. But there are several respondents have
adjustment problems in sexual area and adjustment
to family. Surprisingly their problems in sexual area
and adjustment to family have no significant impact
to their quality of life. It can be understood that the
respondents in this study were already open HIV
status and were active members in non-
governmental organizations that facilitated the needs
of PLWHA, such as access to health services,
antiretroviral drugs, and peer support groups. This
makes active members feel togetherness and
brotherhood so that they do not experience
significant problems in social relations,
psychological well-being, environment, and physical
health.
Self-concept problem has negative significant
relationship with quality of life of PLWHA.
Furthermore, several respondents have self-concept
problem that affect their quality of life. Self-concept
in its development is influenced by the social
environment. The existence of a negative stigma
from the community lead someone develop a
negative self-concept. The study conducted by
Zhang & Li (2016) in China reported that higher
perceived and internalized stigma were more likely
to be imposed on emotional and physical burdens.
5 CONCLUSION
In conclusion, the quality of life of PLWHA has a
strong relationship with self-concept. This self-
concept problem is closely related to the adjustment
problems of family, sexual field, and interpersonal
relationships. Therefore, adequate interventions are
needed to deal with the problem of self-concept so
that the quality of life of PLWHA becomes better.
ICP-HESOS 2018 - International Conference on Psychology in Health, Educational, Social, and Organizational Settings
420
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