Exploring Spiritual and Religious Coping Among PLHIV in a Malaysian Muslim Community: A Qualitative Study

Abstract

Purpose
Increase in life expectancy of PLHIV has brought new challenges especially for young Malay Muslim men who have sex with men (MSM) in Malaysia. This country has strong religious and cultural roots that may pose as additional stigma and discrimination in the lives of PLHIV. Therefore, coping skills among PLHIV is important. Theories on coping strategies has shown that spiritual and religion are one aspect of emotional focused coping. The aim of this study is to explore the views on spiritual and religious (S/R) coping among Malay Muslim MSMs.

Patients and Methods
This was a qualitative study using in-depth interview. Eligible participants were recruited using purposive and snowballing sampling techniques via NGOs and online flyers. The narrative inquiry approach was used to understand the lived experiences of PLHIV and their coping strategies, particularly using S/R coping. The interviews were transcribed verbatim and analysed using Qualitative Data Analysis (QDA) Miner. The data was analysed using thematic analysis.

Results
Interviews with seven participants yielded four themes. Ambivalence towards religion was experienced by participants at some point following their diagnosis. Using S/R as a form of self-reflection was identified. Having positive religious support from family or NGOs helped some participants to embrace religious coping rather than to avoid it, and relationship with God was an important aspect of religious coping.

Conclusion
Spirituality and religiosity can be a form of positive coping for PLHIV. This study suggests the need for S/R guidance as well as positive support from healthcare professionals and religious-based organizations for PLHIV. This can have positive effects towards handling of the condition, adherence to treatment and health outcomes.

Full text

ORIGINAL RESEARCH
Exploring Spiritual and Religious Coping Among
PLHIV in a Malaysian Muslim Community:
A Qualitative Study
Aiza Nur Izdihar Zainal-Abidin
1
, Farnaza Arifn
1,2
, Siti Fatimah Badlishah-Sham
1
, Salmi Razali
2,3
1
Department of Primary Care Medicine, Faculty of Medicine, Universiti Teknologi MARA, Sungai Buloh, Selangor, Malaysia;
2
Maternofoetal and
Embryology Research Group (MatE), Faculty of Medicine, Universiti Teknologi MARA, Sungai Buloh, Selangor, Malaysia;
3
Department of Psychiatry,
Faculty of Medicine, Universiti Teknologi MARA, Sungai Buloh, Selangor, Malaysia
Correspondence: Aiza Nur Izdihar Zainal-Abidin, Department of Primary Care Medicine, Faculty of Medicine, Universiti Teknologi MARA,
Sungai Buloh, Selangor, Malaysia, Tel +6019 3308095, Fax +603 61268888, Email aizadiha@gmail.com
Purpose: Increase in life expectancy of PLHIV has brought new challenges especially for young Malay Muslim men who have sex
with men (MSM) in Malaysia. This country has strong religious and cultural roots that may pose as additional stigma and
discrimination in the lives of PLHIV. Therefore, coping skills among PLHIV is important. Theories on coping strategies has shown
that spiritual and religion are one aspect of emotional focused coping. The aim of this study is to explore the views on spiritual and
religious (S/R) coping among Malay Muslim MSMs.
Patients and Methods: This was a qualitative study using in-depth interview. Eligible participants were recruited using purposive
and snowballing sampling techniques via NGOs and online yers. The narrative inquiry approach was used to understand the lived
experiences of PLHIV and their coping strategies, particularly using S/R coping. The interviews were transcribed verbatim and
analysed using Qualitative Data Analysis (QDA) Miner. The data was analysed using thematic analysis.
Results: Interviews with seven participants yielded four themes. Ambivalence towards religion was experienced by participants at
some point following their diagnosis. Using S/R as a form of self-reection was identied. Having positive religious support from
family or NGOs helped some participants to embrace religious coping rather than to avoid it, and relationship with God was an
important aspect of religious coping.
Conclusion: Spirituality and religiosity can be a form of positive coping for PLHIV. This study suggests the need for S/R guidance as
well as positive support from healthcare professionals and religious-based organizations for PLHIV. This can have positive effects
towards handling of the condition, adherence to treatment and health outcomes.
Keywords: spiritual, religious, coping, PLHIV, MSM
Introduction
Coping is the process of executing the response towards stress. The conceptual analysis of stress and coping introduced
by Lazarus in 1966, explained that stress involves three processes starting with a perceived threat to oneself, followed by
the thought process of a response to the threat and nally, coping is the process of executing that response.
1
Previous
scholarly works
1,2
have divided coping strategies into problem-focused coping, emotion-focused coping, adaptive coping
and dysfunctional coping. Most stresses will elicit a mixture of all types of coping, problem-focused coping tend to
predominate when a person feels that a direct action can be taken to solve the problem. However, when the problem is
enduring, emotion-focused coping is necessary to handle the problem.
1,3
People living with HIV (PLHIV) have unique stressors that require good coping skills. Coping is fundamental to
lessen the impacts and difculties faced by PLHIV.
1,4,5
In Malaysia, the landscape of HIV transmission has changed over
the years. Before 2011, HIV transmission was mainly via intravenous drug use (IVDU). From 2011 onwards, HIV
transmission is via sexual intercourse and specically, among men who have sex with men (MSM),
6
malay and are
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Accepted: 20 August 2022
Published: 31 August 2022

young adults aged between 20 to 39 years old. It was estimated that in 2018, more than 70% of HIV new infections were
within this group and are projected to be the front-runner of the HIV epidemic in the year 2030.
7
These young
populations have higher vulnerability to transmission of HIV attributed by numerous factors such as substance abuse,
low rates of condom use, low rates of testing and promiscuity. Survey has also observed prominent stigma, discrimina-
tion and violence among them probably due to lack of knowledge about HIV causing them to remain hidden from health
and support services.
7
Coping is even more challenging when they are at their most productive age, and MSM living in Malaysia, a country
with strong religious and traditional roots. The Malaysian population consist of two-thirds Malay Muslim
8
and the
society are heavily inuenced by cultural, religious backgrounds and expectations from family and society.
9
On top of
that, both criminal law and Syariah law (Islam legal system) criminalize homosexuality and other perceived indecent
sexual behavior.
10,11
Life expectancy for PLHIV has improved greatly since the introduction of antiretroviral therapy in 1995.
Consequently, PLHIV live longer, are asymptomatic, and can contribute towards society in terms of education,
social interaction, and work.
12,13
Young adults PLHIV may face typical challenges for example they maybe in
education or early stages of their career. In addition, they have further stressors in the form of stigma and
discrimination.
14
The stigma and discrimination may arise from family members, the workplace, healthcare profes-
sionals, religious and cultural perceptions, and the judiciary system. Studies have shown that bias and prejudice
attitudes towards PLHIV are still present among healthcare professionals and can create a barrier for optimum HIV
prevention, treatment, and care.
14–17
There is also an interrelation between stigma, disease disclosure, coping, and
treatment adherence.
18
The Lazarus model
1
that was improvised by Carver
2
shows that PLHIV often employ a more emotion-focused coping
strategy such as by avoidance, positive reappraisal or via social support.
4,5,19
However, living within a society with
strong religious and traditional values, can spirituality and religion be a form of coping mechanism rather than an
additional stressor? Spirituality can be dened as an aspect of humanity that refers to the way individuals seek and
express meaning and purpose, and the way they experience their connectedness to the moment, to self, to others, to
nature, and to the signicant or sacred.
20
The power of spirituality has been found to help patients with chronic illness or
during end-of-life care.
21
Health care providers have acknowledged the role of spirituality as a signicant inuence on an
individual’s ability to cope.
21
Religion on the other hand is a spirituality that is shared by a group of people, often with
a common set of beliefs and practices. Religious coping is dened as religiously framed cognitive, emotional or
behavioral responses to stress, encompassing multiple methods and purpose as well as positive and negative
dimensions.
22
Koenig
23
explained that “spiritual-religious coping is the use of religious beliefs, attitudes or practices
to reduce the emotional distress caused by stressful events of life, such as loss or change, which gives suffering meaning
and makes it more bearable”. In exploring use of Islamic religious approach, studies have explored Muslim transgender
issues and the use of spirituality and religion, in this case Islam, as a method of coping.
24,25
From the positive side,
religion helps with acceptance, improving health outcomes and overall quality of life.
18,26,27
On the contrary, those who
adopt negative religious coping such as believing HIV is a punishment from God related to certain high-risk sexual
behaviors, can interfere with their health status.
18,28,29
Practicing religion and spirituality have been accepted by experts
as parts of coping strategies.
1,2
There is scarce information about the lived experiences of Muslim PLHIV in Malaysia and with regard to the role of
spiritual or religious (S/R) coping. Nevertheless, understanding how they “turn to religion” is still under-researched.
PLHIV have little opportunities to voice out their feelings especially with regard to their views on religion and
spirituality and whether it can be a positive coping strategy for them. It is important to explore and gather information
from PLHIV themselves. This will aid healthcare providers to understand them better and to identify appropriate
interventions that may include S/R coping skills to deal with stressors. The aim of this study is to explore the role of
S/R coping among Malay Muslim MSMs.
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Methods
Study Design
In this qualitative study, participants were recruited via two non-governmental organization (NGO) based in Klang Valley
which provided community service and support for PLHIVs as well as those at high risk of developing HIV/AIDS. The
initial study design was to recruit from infectious disease centers with HIV clinics. This would have provided a wider
range of coping skills from PLHIV at different stages of their condition and treatment. Unfortunately, due to the Covid-19
pandemic, the recruitment had to be adapted to include only those who were stable and healthy on treatment. Therefore,
the NGOs were approached and willing to cooperate with the study.
Study Participants
The study participants were PLHIV. The inclusion criteria were men aged 20 to 39 years old, Muslim, contacted HIV
through sexual intercourse with men (MSM) and has been diagnosed with HIV for at least the last three months. The 20
to 39 years old group was selected because HIV transmission via sexual intercourse is largely from this age group.
7
The
choice of participants who have been diagnosed for at least 3 months was made because one would then have gone
through enough time to try out several coping strategies.
Participant Recruitment
Method of recruitment were via purposive and snowballing technique. Purposive refers to a selection of participants
based on their capacity to provide richly textured information relevant to the subject to be explored.
30
This method is
typical for qualitative studies. Snowballing refers to identication of participants through suggestions made by initial
contacts. The NGOs were given an online yer to distribute among their members. Three of the participants contacted the
researcher via WhatsApp after receiving the yers. Another four participants were suggested by the NGO with their
permission. The researcher presented herself as a postgraduate student doing research on HIV and in each case, the
researcher screened the potential participants for their eligibility through WhatsApp chats. All of the contacted
participants were eligible and chose to participate in the study. An agreed date, time and venue for the interviews
were arranged.
Data Collection
The in-depth interviews were conducted from July 2020 until May 2021. The in-depth interview was conducted because
a one-to-one interview allows a more comfortable atmosphere for the participants. It is also deemed more appropriate
compared to a focus group considering the sensitivity of the subjects, the differences in their experiences and coping
mechanisms.
31,32
Those who agreed to participate signed a consent form and proceeded to arrange for a face-to-face interview with
strict Covid-19 standard operating procedure (SOP). The researcher informed that their participation is voluntary, and
they were then briefed individually on the purpose and benets of the research and the assurance of condentiality of
their participation and information shared. The participants provided informed consent for their quotes to be published
with their personal details to be anonymous. They were also told that the interview will be audio recorded and that they
can withdraw from participating at any point of time during the interview. They were then given consent form to be
signed as proof of willingness to participate.
The in-depth interview using semi-structured question guide was conducted in a private discussion or consultation
room, either at the researcher’s university or at one of the NGOs ofces. One researcher who was trained in qualitative
interview conducted all the interviews to ensure standardization. The semi-structured questions were conceptualized,
formulated and nalized by the research team and approved by the ethics committee. Interviews were conducted with the
presence of a note-taker, whose role is to observe and note the actions, emotional responses, facial expressions of both
participant and researcher, and to give feed back to the researcher on any possible bias, positive or negative reactions
from the researcher or participant. The interviews were audio-recorded and were transcribed verbatim. Each interview
session took approximately 90 minutes.
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At the beginning of the session, the researcher collected basic socio-demographic data of the participant. As an icebreaker
and to build rapport, the participant was asked to start the opening plot by asking them to relate the story that signify them.
Subsequently, the researcher guided the participant to disclose more in terms of their coping strategies. The interview
protocol was based on the S/R coping strategies developed by Carver et al.
2
The coping mechanism maybe problem-focused
(such as active coping, planning, suppression of competing activities, restraint coping and instrumental social support),
emotion-focused (includes emotional social support, positive reinforcement, acceptance, turning to religion, and humour) or
dysfunctional coping (venting of emotions, behavioural or mental disengagement, alcohol-drug use and denial).
2
In eliciting their coping strategies, the questions are designed as open-ended to allow the participants to freely share
on whatever strategies that they use. The questions consist of four primary open-ended questions with multiple probing
questions under each primary question. The interviewer started the interview with open-ended questions, such as “Could
you please share with me your story of how you experience HIV?” and “Could you share with me, how do you cope with
any events in your life? Before and after being diagnosed”. Probes were used as needed and occasionally participants
were asked to elaborate more. Since religious practice among PLHIV can be a sensitive issue, it was probed only when
they mentioned anything related to S/R coping cues. If they did not mention anything related to this, the interviewer will
probe with direct questions regarding their views on S/R coping. If the participants gave cues on matters related to
religion or spirituality, the interviewer will then focus on S/R coping with questions such as, “What is your opinion on
the religious way of coping with events in your life?”. To encourage the participants to provide more explanation,
questions such as “Is there anything that you want to say?” were asked at the end of the interview.
During the data collection period, the study was challenged by the increasing numbers of COVID-19 cases and
lockdowns. The researcher observed the data saturation throughout data collection and transcription, and it was
discovered that data saturation occurred at participant six (P6). We proceeded with another participant however, the
study had to be halted due to the second wave of COVID-19 infections that brought stricter lockdowns, and we were not
able to obtain ethical approval to conduct the interviews online. COVID-19 posed serious challenges in this study
especially since PLHIV were a vulnerable group and were susceptible in contracting serious complications if exposed to
COVID-19 infection. Hence, repeated interviews were not carried out, but the researcher maintained in touch with the
participants for further clarication or to obtain missing information from them.
Data Analysis
The interview was transcribed verbatim after each interview. The transcription was in the language used by the
participants, a mix between the Malay language and the English language. The transcribed interviews were analyzed
using the Qualitative Data Analysis (QDA) Miner Lite software. Content analysis was conducted for the coding of the
data. The rst few interviews guided the researcher through the open coding process to determine the codes and this also
allowed further renement of the interview questions. Codes were determined based on what was mentioned verbally and
directly or something that was inferred from phrases mentioned by the participants.
Data from each interview was fragmented and labelled to enable the researcher to continuously compare similar
events in the data, a process referred to as constant comparative analysis. In other words, information that has been
obtained in completed interviews was coded and rened simultaneously as new data from the subsequent interviews were
gathered. Similar experiences shared were labelled with a specic code. This open coding process avoids preconceived
notions and minimize biases regarding the research. The co-researchers were briefed on the codes developed for their
opinions and agreement.
The next stage in the analysis requires axial coding in which the codes were revised and grouped into categories.
Categories were created based on an existing code, or a new more abstract category was developed that encompasses
a few different codes. Some codes were found to be redundant, thus a new code was formed. Some codes were merged
and renamed. The coded data was further explored to identify recurring themes, formed through narrative thematic
analysis.
33
The data analysis was shared with the co-researchers who checked the plausibility of the data interpretation
and ensured that the data analysis was systematic and veriable. The research team had several face-to-face and online
meetings to discuss the data interpretations and the nalized thematic analysis. Disagreements and discrepancies between
code labels or identication of phrases according to codes were deliberated and resolved via group discussions. The
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thematic analysis was conducted together and veried by the research team. The researchers checked the nal data
interpretation. Figure 1 portrays the entire research process.
To ensure validity of the interview and data analysis, the process must be credible.
34
In this study, credibility was
employed using investigator triangulation and member checking to ensure the validity of the interview process.
There are four types of triangulations;
35,36
method, investigator, theory and data source triangulation. In this study,
investigator triangulation was done which involves seeking feedbacks from the co-researchers on each process of
data collection and analysis. Member checking, or referred to as participant or respondent validation, is a method for
exploring the credibility and validation of results. It requires returning the data or results to research participants to
check for accuracy and resonance with their experiences and is an important step to ensure how accurate the
respondent’s realities were represented in the nal account.
34
The full transcription was sent to the participants
through WhatsApp messaging immediately after the transcriptions were done. All the participants acknowledged and
agreed with the transcriptions without giving further comments. In the context of this research, member checking
was only done to get conrmation by participants on the preciseness of what was transcribed. The codes and themes
that were developed during the analysis stage were not shared with them. Several researchers had raised that it may
be an attractive idea to do so but it is arguably not a verication strategy. Methodologists including Hammersley
37
and Morse
38
indicated that if verication is for participants to judge that the analysis is correct, it can actually be
more often a threat to validity.
Figure 1 Flow chart of the interview process, transcription, data analysis (coding and thematic analysis).
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Results
A total of seven participants (P1-P7) with a mean age of 30.57 years were interviewed. They all belonged to the Malay
ethnicity, and were all Muslims. Table 1 describes the background sociodemographic characteristics of the participants.
The participants, when invited to share about themselves or their stories, narrated different opening plots based on
what signies them. We extracted three codes in the opening plots which are job background, the plot of their diagnosis
of HIV, and acknowledging that HIV is their turning point. Table 2 describes the narrative summary of the lived
experiences shared by the participants.
The Themes
Four main themes emerged from the analysis, and they were ambivalence towards the religion, breaking stigma through
self-reection, the need of support for positive guidance and religion and relationship with God as part of coping. Table 3
shows the themes and sub-themes that emerged from the in-depth interviews.
Ambivalence Towards Religion
All participants described their uncertainties and feelings of ambivalence towards religion at some point following their
HIV diagnosis. Although some of the participants have faith that religion plays a role in self-restraint and sexual
abstinence, most agreed that they felt a disengagement between religion and sexual behavior. This is a common
perception for MSMs and is supported by ve of the participants, including Mr. P5,
If you see it roughly, actually it (the religion) aids to improve, meaning self-improvement in the sense of spirituality, for a better
soul. But to be straight, it’s unlikely. [P5]
During the stages of grief of the participants, some of them portrayed uncertainty and feeling doubt towards the religion.
Questioning God, for example, can be part of the cycle before reaching acceptance. Mr. P3 who was doubtful and denied
treatment for three years after being diagnosed stated that,
When we relate to (life) before being diagnosed, we will question why … why me? Why that moment? And many other things.
Because, rst, I am disputing why I was born and suddenly been icked the instinct to like men. Second, to be diagnosed. These
two factors. Once in a while, why aren’t we born as normal human beings?. [P3]
Being ambivalent towards religion also made a participant to reminisce his previous rejection of the religion and it was
a decision that he regretted, Mr. P1 said he would have responded to the “call of religion” earlier if he knew he will
become like this,
Table 1 Sociodemographic Data of Participants (n=7)
Age
(Years)
Sexual
Orientation
Marital
Status
Education
Level
Employment Income
(RM
a
)
COC
b
Duration of
Illness (Years)
HAART
c
P1 30 Homosexual Single Tertiary Private sector 2001–4999 Disclosed (brother) 3 Yes
P2 32 Homosexual Single Tertiary Unemployed <1000 Disclosed (friends) 3 Yes
P3 28 Homosexual Single Tertiary Private sector 2001–4999 Disclosed
(family, friends)
10 Yes
P4 29 Homosexual Single Tertiary Private sector 2001–4999 Disclosed
(sisters, friends)
3 Yes
P5 31 Homosexual Single Tertiary Private sector 2001–4999 Disclosed
(friends, colleagues)
2 Yes
P6 31 Homosexual Single Tertiary Private sector 1001–2000 Disclosed
(family, colleague)
11 Yes
P7 33 Homosexual Single Tertiary Private sector 2001–4999 Not disclosed 2 Yes
Abbreviations:
a
RM, Ringgit Malaysia;
b
COC, Circle of Condentiality;
c
HAART, Highly Active Anti-Retroviral Therapy commenced.
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Table 2 The Narrative Summary of the Lived Experiences
Participant Narrative Summary of the Lived Experience
P1 P1 works in a retail body care shop. He was initially worried to work and disclose his status because of the discrimination faced by
PLHIVs. However, the company he works for is considerate and the positive environment has helped with his coping. When PI was
in school, he had liked a girl, however the relationship failed. One of the reasons was he was expected to be more mannish. After
entering boarding school, he was groomed by a trusted teacher who was a school warden, to become homosexual. That was the
point when he started feeling confused of his sexual orientation, got involved with relationships with men and found out it is less
complicated than having relationship with the opposite gender. At present, he accepts his HIV diagnosis as his own mistake and
looks up to his brother who has a normal family structure (wife, kids) and wishes to have one too someday. Even though he admits
that his sexual attraction to men is still strong, he tries to restraint himself and asks guidance from God to have istiqaamah (In
Arabic, it is often translated to mean “uprightness, steadfastness and correctness”). His brother is the main social support, and he
has good health-seeking behavior. He adopts positive religious coping strategies such as improving his ibadah and believing in the
power of prayers.
P2 He graduated with a degree in accounting. P2 thinks he must be successful in his studies and sports as some sort of validation from
his family and society. He has a soft nature since young and that led to bad childhood experiences for him, for instance being teased
by his family. “My uncle once called me “Pon, Pon, Pon” (Malay short form for Pondan = a pejorative term used to refer to gay boys
ie, Faggot/Fag in English slang), because I was considered soft …. So, I did not get the idea, what was wrong with, with the way
I carry myself?”. He lacks male family gure His dad was a weekend husband, and he has no brother, causing him to seek “brotherly-
love” from boys since primary school. He then naturally became attracted to good looking guys and had sexual experience with
them as early as fourteen years old. His acceptance of HIV was easy because he was aware of the risk and believed it as a test from
God. Using life quote “effort will denitely be rewarded, the rest is to believe in yourself”, P2 uses positive reinforcement to cope
with the disease actively and passively. He likes to blend into society rather than just being in the “gay/LGBTQ community” because
he feels that being loud in the LGBT community will portray a bad impression of the Muslim religion. He thinks everyone’s sins
should be kept to themselves.
P3 P3 was diagnosed at the tender age of 18 when he was a nursing student in a university in northeast of Malaysia. He was detected
HIV positive from a blood donation drive, and the result was leaked to the university’s administration. He received external stigma
from all levels (university’s management, friends), hence he voluntarily stopped studying and was struggling by himself, alone in Klang
Valley with neither families nor friends near him. He suffered from depression and at one time, tried to cut his wrist, drank alcohol
and drove swiftly in attempt to end his life. After three years, his parents came from the village offering social support and became
his main social support now. His mom even accompanies him for doctor visits. Albeit receiving support from his families, sometimes
he has doubts about the families’ acceptance “ … but the interval was long enough, from 2011 until 2015 or 16, for me to accept
wholeheartedly, because even though my family knows, but then again, I was still like, are they really, ok?”. P3 took roughly ve years
before he reached acceptance phase and underwent ups and downs in his life through stages of grief including denial and social
isolation. The experience has encouraged him to currently works with a religious-based NGO to get religious guidance and offering
support to those at risk of HIV.
P4 HIV is a major turning point for P4. He has soft character, with dyed hair and metrosexual dressing style. He was tearful throughout
nearly 80% of the interview, especially when speaking about how he was diagnosed, how he lost his future and dreams, how he
searches for God, and how his sister genuinely supports him. Being diagnosed with HIV was shocking and shameful for him, and he
copes by venting his emotions. He had a hard time to let go of his dream to pursue nursing school, considering he does not come
from a well-to-do family and as the rst son, it was his father’s hope for him. He suffered from severe depression as well but luckily,
he has his sister as the main emotional social support till now. He sought the meaning of this test from God and perceives that he
gets guidance from Allah. Currently, he is involved in a religious-based NGO to help others with the disease, and he believes doing
good deeds can help him cope with the illness. He said, “praise be to God, maybe with Allah’s help, my sister’s, my friends who
always give me support, I can stand on my own feet again, and to help other people who are prepared to take heed”.
(Continued)
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Table 2 (Continued).
Participant Narrative Summary of the Lived Experience
P5 P5 admitted that he was too young when he committed the mistakes that ended with him contracting HIV. He was very particular
about having protected sex and always wear condom and being vigilant about risk of infections he can get without it. It was on one
occasion during his holiday to Bali, Indonesia when he became so thrilled and forgot to wear the protection. He felt down initially
after being diagnosed, but not long after that he gained his motivation to actively cope with the illness and got treatment. He is
currently residing in a protection home/shelter to recuperate, “I am grooming myself spiritually and religiously”. The protection
home is built by an NGO to protect those with HIV, to help them turn to religion and restraint from sexual activities. P5 also has an
interesting way of coping in which he feels spiritually lifted by looking at greeneries. Being with the trees and breathing in the fresh
air can give him serenity without needing inspiration from things other than nature. In fact, right after he was detected to have HIV,
he wept, walked to the clinic and on the way was able to calm himself with the trees!
P6 P6 was in denial after being diagnosed because he was unaware of his risks to get HIV. This was due to his ignorance and lack of
knowledge about the illness. He had a social life back then. Like P3, P6 was diagnosed after joining a blood donation campaign in his
college. He was called to the nearest hospital for a conrmatory test. However, because he was then in denial stage, he denied
treatment and used avoidance and distractions as passive coping during the early years of the diagnosis. Throughout the eight years
after being diagnosed with HIV, he kept himself preoccupied with pursuing his study, working, and doing business. Eventually in
2018, he was admitted for an opportunistic infection which was pulmonary tuberculosis and was started on HAART. His family
became the main social support since then. Consistent with views from other participants, P6 feels difcult to remove his attraction
towards men, but he wants to improve himself. His wishes to start anew with his responsibility towards his health, sharing his
experience with his HIV clients and colleagues at the NGO where he works.
P7 P7 found out his diagnosis of HIV after being admitted for pulmonary tuberculosis, an opportunistic infection akin to P6.
A counsellor at the ward provided him with information and knowledge about the disease and he decided to start treatment
without hesitation. For him, even though the diagnosis was unexpected, he felt that being infected by HIV is not much of an issue.
He perceives the disease just like any other chronic disease that needs lifetime treatment and follow-up. He feels more comfortable
not telling anyone about his status and doing well just by keeping himself positive and looking after his health. He copes better by
being secretive about his illness, “so as long as others do not know my status, I am ne at this point”.
Table 3 Themes and Sub-Themes of R/S Coping of Participants
Themes Sub-Themes
1.Ambivalence towards religion a)Disengagement between religion and sexual behaviour
b)Confuse of sexual orientation
c)Questioning God
d)Previous rejection to religion
e)Everyone sin and being tested differently
2.Breaking stigma through self-reection a)A test from God
b)Consequence of own mistakes
c)Religion is not to be blamed
d)Fear of God’s punishment
e)Remembering death or hereafter
f)Respecting religion/culture
3.Support for positive guidance a)Unstigmatized religious guidance
4.Religion and relationship with God as part of coping a)Searching for God
b)Role if ibadah (religious rituals)
c)Prayer (Du’a) as guidance
d)To do good deeds
e)Using nature to heal
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My mom has gone for Hajj, to umrah. She asked me to come along, to go together, saying it’s okay, I am paying for everything.
But at that time, I was not ready yet. Now that I have gotten this, I regret not going afore. [P1]
However, another participant has a dissimilar opinion about religious practice. Mr. P2 for instance, who has support from
the LGBT community has some doubts toward religious rituals, believing that worshipping is not the only part of the
conduct of the religion.
I don’t go, like, let’s go for prayer, do sunnah prayer or anything. I’m not that level yet … at the moment Allah has provided that
realization, is also, a sustenance. [P2]
He feels that conforming with others who were more liberal in gender expression and sexual practice became the medium
to reduce the anxiety of having done a great sin.
Mr. P2 has a strong opinion that everyone is a sinner and being a PLHIV did not make him any different or a worse
sinner, he is just being tested differently.
We are all tested with our difculties. If you look at the list of major sins, right, it’s not just homosexuality. For instance, you
take orphans’ properties. So, like we are all sinner. [P2]
Breaking Stigma Through Self-Reection
Most participants believed that being aware of themselves and looking back at their life can be a form of self-reection to
alleviate internal stigma. As with other participants, Mr. P2 who faced various difculties during his childhood and has
many uncertainties about religion however, reected that getting HIV is a form of test from God. “First, Allah does not
charge a soul except within its capacity, and second, everything happens for a reason” (P2).
Other participants self-reected by blaming their own mistakes. Mr. P7 has good active coping whereby he proceeded
with HIV treatment without delay after he was admitted for pulmonary tuberculosis. He stated, “seriously, I don’t know
who to blame. So, I blame myself because I created the problem” (P7). The participants mostly believed that no one
should be responsible for what had happened to them, and they hold themselves accountable regardless of their religious
beliefs. Religion is not something to be blamed and this is advocated by a participant,
I don’t want to be a tnah to religion. So, what I did, it’s because of me. It’s not because of Islam. Islam has its framework. It
was my fault, I did it because I wanted to. [P2]
Furthermore, from the perspective of some of the participants, religion can help them to avoid doing more sin and
functions as self-restraint. They can do that by remembering death or hereafter and fear of God’s punishment. “This
world is not a place for us to live, but a place for us to die. The eternal place for us is the akhirah” (P4). Moreover, Mr. P6
who joined an NGO as a form of charity to help other MSMs confessed that it is a challenging task when some of the
homosexual men that he helps request to have sexual contact with him. However, he can reject them, “It means that it is
sinful … it means homosexuality is a great sin, hence I avoid it” (P6)
Finally, Mr. P2 albeit having acquaintances from the LGBT community, he opposes the opinion of openly promoting
the lifestyle. He agrees that respecting the religion is also necessary as a part of being Muslim,
well, because you are loud, so people think, the rest is like you. No. I hate that kind of people. Like if you’re ghting for human rights
outside Malaysia, go ahead. This is Malaysia, you have to respect the foundation of Malaysia- we have religion, and the culture. [P2]
Support for Positive Guidance
The participants expressed having positive guidance and support as important, such as family members, friends, and
religious teachers. When seeking help from another person for religious guidance, the participants highlighted that
sincere help without bias, prejudice, or stigma from the religious person is more acceptable and fullling. For example,
Mr. P3 who suffered from depression for three years confessed that positive guidance depends on the person who
advocates them. He has found professional help to discuss religious and spiritual issues in the religious-based-NGO
where he works,
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The teachers who understand us are there too, so … any questions that we ask, they will help to answer. We feel reassured …
Good because the responses are not discriminating of stigmatize us. [P3]
Other participants sought support from their family members to guide them in practicing more positive lifestyles and
religious coping. For example, Mr. P1 was fully supported by his brother who encouraged him to have good health-
seeking behavior and adopt positive religious coping strategies such as improving his ibadah and believing in the
power of prayers. Similarly, Mr. P4 has his sister while others have friends and colleagues as their trusted condants.
It was during fasting month, I remember I read Qur’an and all, I was looking for peace but I was not peaceful at the time. Even
though I prayed. Maybe at the time, I didn’t have anyone to talk to.
For Mr P4, having someone to conde in and to receive that guidance is important.
Seeking peace and tranquility while struggling with HIV comes also from their involvement with non-governmental
organizations (NGOs). For P3, the support from NGO with religious guidance is important, he said “The ustaz who understand
us is there like … whatever question, so with me, when we ask, the ustaz can help give answers. So, we feel relieved.”
Religion as Part of Coping
Many of the participants believed that an important aspect of religious coping is the relationship with God. While
describing their relationship with God, a few of the participants described that the search for God came in many ways. It
was either by their effort to get near Him or by getting guidance from another person. A few who felt guilty for practicing
homosexuality perceived that having been diagnosed with HIV became the main turning point to be a more religious
person. For example, the early life narratives of being guilty as MSMs who was against religious teaching had turned into
using religion as part of routine ways to nd comfort in their lives.
This was described by Mr. P4, a nurse who described a closer relationship with God after he was rst diagnosed with
HIV. He described,
After I was diagnosed, I was indeed looking for God in my life. Aa … I guess, I searched for it for quite a while, I was looking
for what I really want in my life. [P4]
He is currently working with a religious-based NGO and that has assisted him in his quest to get closer to God.
Well, people say the power of God is enormous. That was when I got closer to Allah, all along. Praise to Him, it’s right when people
say Allah helps us a lot. If you ask me, in terms of spiritual, denitely Allah helps us a lot. In this world, there is nothing we can be
proud of. Even if we have a position, or whatever it is, when we are unwell like this nothing can aid us other than Allah’s mercy. [P4]
Relationship with God is strengthened by religious practice. Religious practices were considered by all participants to be part
of their spiritual needs. The rituals can be in any form, for instance in this study the participants described more towards the
role of mandatory prayer itself or by reciting prayers as their guidance. Mr. P1 who found substantial emotional social support
from his brother, also concluded that ibadah plays a role in his religious coping. “Prayers, you fast, recite Quran, ha all those
things … to be honest when I started to do that, maybe it is one thing that makes me feel stronger” (P1). Meanwhile, Mr. P4
who acquired emotional social support from his sister, seeks enduring guidance from God through his prayers,
If we take even minimal wrong step, we can return to the previous path. That’s why, I pray Oh Allah, my lord, give me your
light and your guidance, Oh Allah, please change me. [P4]
A few of the participants also suggested that doing good deeds can be part of their religious coping. Participation in
active philanthropy and charity work instilled satisfaction and positive evaluation in oneself. It can help them to be closer
to God or enhance their spirituality. For example, Mr. P6 who had lived a social life until he was faced with the
repercussion of contracting HIV, suggested that
By doing this job (working with an NGO), I help people. It means, I feel satised with that I have helped and now some of my
clients are already on treatment, and they get education from me. [P6]
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Most of them who work with the NGOs believe that helping another person who is at risk of contracting HIV is
rewarding, while others believe in charity or donation, “And now that I am like this, I like to … even if I have only one
ringgit, I like to give sadaqah” (P4)
Interestingly, one of the participants, Mr. P5 he used a symbolic meaning of getting himself closer to God through
nature. Right after being, he was told that he was HIV positive, he cried for a while before putting himself back together
by getting inspired by the trees. He said, “I can be calm. When I cry and I think of the One who made the trees, and this
is what gives me peace.” Direct preaching about religion would not go into his heart, but he will look at the trees to make
sense of what has been told to him. “Hence, I interact with the trees. Trees are my source of inspiration for me to
motivate myself” (P5). “To help me, Allah eases me with the greeneries” (P5).
Discussion
In this study, we extracted the perceptions related to spirituality and religion faced by Malay, Muslim MSMs as coping
strategies after being diagnosed with HIV. The four themes identied gives a better understanding on how spirituality and
religion can provide a positive coping mechanism among PLHIV.
The narrative of the Malay, Muslim MSMs from this study emphasized that the ambivalence of religion exists at the
beginning of their lived experiences as MSMs. Hence, this reaction is normal and part of the early phase of grief and
handling the diagnosis of HIV. Those who received religious support would eventually adopt religion as a coping
mechanism. On the other hand, those who sought and receive support from NGOs with liberal and gender equality
background would maintain ambivalence towards religion. The support system given to those MSMs and PLHIV
determines the outcome of the spectrum of acceptance in adopting religious coping.
Among PLHIV, stigma can lead to denial of HIV diagnosis and poor medication adherence.
18
Internalized stigma
with regard to being HIV positive can make a person feel “dirty” or “worthless”.
16
Therefore, breaking the stigma
through self-reection is an important aspect of coping. In this study, the participants had good self-reection and even
though some believed that HIV is a “test from God” and that “they have no one to blame but themselves”. Some even
considered it a punishment from God. It is difcult to differentiate between a test from God or a divine judgement
29
and
is all based on the perception of the individual. However, to self-reect is one of the spiritual foundations and an
important aspect to break stigmatization.
22
The majority of PLHIV in the present study received support either from family members, friends, or religious-based
organizations that focus on supporting those with HIV. In Malaysia, the Malaysian AIDS Council (MAC) was established
to represent and strengthen the NGOs who are directly involved with HIV/AIDS issues. Under the umbrella of MAC,
there are many partner organizations from the medical industry, religious-based communities, and also legal
foundations.
39
Our study has shown the signicant impact of religious-based NGOs on the participant’s religious coping.
The participants who worked with the NGOs have positive religious coping, hence the good acceptance of the illness.
This nding is supported by studies that demonstrated a better quality of life through the roles of NGOs and how
religious coping positively relates to acceptance.
18,40
This is because they have good ART adherence to have a near-
normal life expectancy and can contribute more to society.
Positive religious coping skills identied from this study include self-reection, support, building a strong relationship
with God via contemplation and religious practices. It is demonstrated by the participants that religious coping can be
a positive coping mechanism in their lives. However, in Malaysia, a question arises whether PLHIV receives the guidance for
positive religious coping. Although a training manual for “HIV and Islam”
41
was developed for use among religious and
medical personnel, there is still a query on how much training has been conducted and implemented in medical settings. In
terms of medical care, even though the rst line of HIV treatment is given for free at government hospitals and clinics, only
50% of the PLHIV seek treatment. This is due to multiple factors, not only due to shame and fear of social stigma but some
do not have stable jobs and frequent hospital visits can affect them nancially.
42,43
While only approximately half of the
PLHIVs come forward for medical care and seeing healthcare professionals (HCP) regularly, many of the HCPs however are
not condent to incorporate S/R coping as a more holistic patient-centered care.
44
Draman
24,45
has suggested
a multidisciplinary approach from educational, medical and religious elds to attend to the needs of those stigmatized
such as transexual in this country. From this study, we conclude that more training is needed to approach, and include
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marginalized communities such as MSMs and PLHIV to give them better knowledge and access to healthcare. There is
a need for more support and collaboration between religious-based organizations, NGOs with our healthcare system.
Strengths and Limitations
The main limitation of this study is that due to the Covid-19 pandemic, recruitment was done among PLHIV who were
stable and on treatment. They were recruited from NGOs, hence, may already have good coping skills. Therefore, the
views and experiences of MSMs with HIV in other community settings may differ and limits the generalization of the
ndings of this study. Secondly, there may be some biases in undertaking this interview as the main interviewer (ANI) is
a female, Malay, and Muslim health practitioner and may have underlying preconceptions. Finally, the Covid-19
pandemic also restricted the data collection. Despite these limitations, this study provides an important insight into the
S/R coping among Malay Muslim MSMs in Malaysia.
Trustworthiness
Based on four criteria: credibility, transferability, dependability, and conrmability, a few measures were taken to
enhance the rigor of this study. First, to attain credibility or condence in the research, the interviewer ensured adequate
engagement with the participants. The verbatim transcripts were read and reread to vividly describe their experiences
with associated quotations and data were discussed with research team. To achieve transferability and dependability, the
analysis of each case was done in-depth using above-mentioned qualitative software. Audit trails were maintained,
including the original recordings and questionnaires as well as verbatim transcripts. Finally, recruitment and interviews
were conducted by the same investigator, who was a postgraduate family medicine student with knowledge about HIV
who had undergone special training in qualitative methods and in-depth interview skills from a PhD-trained co-
supervisor with expertise in qualitative studies. Regular discussions of the details of the study process were held to
ensure the conrmability of the ndings.
Conclusion
Positive religious and spiritual coping have benecial effects on PLHIV among Malay Muslim MSMs. The spectrum of
spiritual and religious coping is determined by the guidance and support they receive from family members, friends and
religious based NGOs or the LGBT community. Those who practiced religion had both problem-focused and emotion-
focused coping strategies, specically withdrawal from previous high-risk behavior, better self-control, and positive
reappraisal. Therefore, considering this study’s results, there is a need to collaborate between religious-based organiza-
tions and health care professionals to improve care towards PLHIV.
Another interesting nding from this study is the struggle that MSMs face to restrain themselves from high-risk
behaviors even after they have embraced religious coping. Islamic scholars have described “Iman”, or faith as “a
knowledge in the heart, a voicing with the tongue, and an activity with the limbs”. It means, submitting the heart to
Islamic faith is insufcient without expressing them by tongue and activities. Further research should explore the
justication and reasons behind disengagement between religion and sexual behavior.
Ethical Considerations
This study attained ethical approval from the UiTM Research Ethics Committee (REC/670/19) and Medical Research
and Ethics Committee (NMRR-19-4027-51484 (IIR)).
Acknowledgments
We would like to thank all participants involved in this study and shared their precious time and experiences with us.
Author Contributions
All authors made a signicant contribution to the work reported. ANI, FA, SFB, and SR were involved in the conception,
study design and execution. ANI conducted the interview ie, acquisition of data. ANI, FA, SFB, and SR were involved in
analysis and interpretation. ANI drafted the manuscript. FA, SFB and SR substantially revised and critically reviewed the
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article. ANI, FA, SFB, and SR have agreed on the journal to which the article will be submitted, reviewed and agreed on
all versions of the article before submission, during revision, the nal version accepted for publication, and any
signicant changes introduced at the proong stage. ANI, FA, SFB, and SR agree to take responsibility and be
accountable for the contents of the article.
Funding
This study was supported by grant from the Geran Penyelidikan Khas (GPK) (600-RMC/GPK 5/3 (200/2020)). The
funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Disclosure
Dr Siti Fatimah Badlishah-Sham reports grants from Universiti Teknologi MARA, during the conduct of the study. The
author reports no other conicts of interest in this work.
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