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Title: Beliefs and practices of complementary and alternativemedicine (CAM) among HIV/AIDS patients: A qualitativeexploration
Author: Syed Imran Ahmed Syed Azhar Syed SulaimanMohammad Azmi Hassali Kaeshaelya Thiruchelvam SyedShahzad Hasan Christopher K.C. Lee
PII: S1876-3820(15)30041-XDOI: http://dx.doi.org/doi:10.1016/j.eujim.2015.09.135Reference: EUJIM 457
To appear in:
Received date: 3-3-2015Revised date: 16-9-2015Accepted date: 16-9-2015
Please cite this article as: Ahmed Syed Imran, Sulaiman Syed Azhar Syed,Hassali Mohammad Azmi, Thiruchelvam Kaeshaelya, Hasan Syed Shahzad, LeeChristopher K.C.Beliefs and practices of complementary and alternative medicine(CAM) among HIV/AIDS patients: A qualitative exploration.European Journal ofIntegrative Medicine http://dx.doi.org/10.1016/j.eujim.2015.09.135
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Original Article
Beliefs and practices of complementary and alternative medicine (CAM) among HIV/AIDS patients: A qualitative exploration
Syed Imran Ahmeda,b, Syed Azhar Syed Sulaimana, Mohammad Azmi Hassalia, Kaeshaelya Thiruchelvamb, Syed Shahzad Hasanc , Christopher KC. Leed
aSchool of Pharmaceutical Sciences, Universiti SainsMalaysia (USM), Malaysia. bSchool of Pharmacy, International Medical University, Malaysia. cSchool of Pharmacy, University of Queensland, Australia. dDepartment of Medicine, Hospital Sungai Buloh, Selangor, Malaysia.
E mail Addresses:
SASS: [email protected]
MAH: [email protected]
SSH: [email protected]
CKCL:[email protected]
Corresponding Author: Syed Imran Ahmed Department of Pharmacy Practice School of Pharmacy International Medical University (IMU) Kuala Lumpur, Malaysia 0060-3-27317295 [email protected]
Abstract
Introduction: Complementary and alternative medicine (CAM) is often used within the
sphere of chronic disease management. Exploring the beliefs and practices of CAM use
among People Living with HIV/AIDS (PLWHA) could be vital, since some of these
therapies may adversely affect the outcomes of the conventional HIV treatment.
Methods: A phenomenological methodology was adopted. In depth patient interviews
were performed with Malaysian patients over the age of 18 diagnosed with HIV/AIDS
using a semi structured topic guide. Prior to each interview both written and verbal
consents were taken. Saturation was reached after the 13th interview, with no further
newly emerging information. All interviews were audio-recorded and subjected to a
thematic content analysis framework.
Results: Beliefs in the effectiveness of CAM, types of CAM and reasons for CAM use
emerged from the data as themes. A majority of the participants had a strong faith in the
effectiveness and safety of CAM due to their natural origin. Perceived immune boosting
effects, devoid of any toxicities and strong cultural influences were found vital driving
forces towards CAM use. Remarkably, participants were generally of the view that CAM
can always be used either with conventional HIV medicines or until one’s CD4 cell counts
drop significantly.
Conclusions: Despite the possible underlying adherence and therapeutic challenges
towards taking ARTs; CAM use in contemporary HIV-care may provide a proactive
means of engaging PLWHA, and generate self-care practises that promote positive health
behaviours, including proper use of ARTs. Therefore, patient-healthcare provider
communications are critical.
Key Words: HIV/AIDS, Qualitative exploration, Complementary and alternative
medicine, Beliefs and practices
Introduction
The World Health Organization (WHO) describes traditional medicine (TM) as the “sum
total of knowledge, skills, and practices” of unique cultural origin that can be used to treat
disease and illness and improve physical and mental wellness. [1] This classification is
often used interchangeably with complementary and alternative medicine (CAM), a term
used to denote TM and includes dietary supplements such as natural compound-based
vitamins, herbal medicines such as gingko and ginseng in addition to therapeutic
practices such as yoga, acupuncture and tai chi. [1] CAM is not native to many
populations, as it has been globally recognised in the past few decades. The vast majority
of people in certain Asian and African countries use CAM as primary care modalities. [2]
Human Immunodeficiency Virus (HIV) is currently a manageable chronic illness [3] and
the life expectancy of infected people in developed countries is comparable to those
without HIV. [4] While HIV/AIDS is widely recognised as a chronic illness, it is often
excluded from wider chronic disease management, focusing on conditions like diabetes
and COPD etc.; however the integrated principles of self-care are also applicable to
HIV/AIDS, similar to other chronic illnesses. [5] Given this context, it is well established
that PLWHA experience physical and psychosocial issues, hence the use of CAM is very
popular among this group of patients [6], both as an alternative or complementary to the
conventional antiretroviral therapies (ARTs). [7]
It is not surprising that CAM use is common among PLWHA with poor access to ARTs,
particularly in many developing Asian and African countries [8–11]. On the contrary, in
developed countries such practices are not as common, because ARTs are readily
accessible. [10] Beside these realities, beliefs and positive attitudes towards the
effectiveness of CAM [12] along with poor/negative understanding of ARTs [13,14] could
also be the strong contributing factors toward widespread use of CAM modalities among
PLWHA.
Self-reported use of any CAM in the general population varies from 10% to 75% globally,
while restricted to visiting a CAM provider, the prevalence of use fluctuates between 2%
and 49%. [15] Hence, despite the proven efficacy of ARTs, approximately 60% of PLWHA
use CAM. [14] A majority of these patients believe that CAM improves general wellbeing,
boosts energy levels and enhances the immune system. They also use it for relaxation,
spiritual wellbeing and healing, in addition to alleviating stress, depression, nausea,
weight loss, relieve pain, and to combat opportunistic infections. [16]
In a Malaysian setting Z.M Siti et al. [17] reported the prevalence of TM/CAM use in a life
time to be 69.4% and 55.6%, respectively. While viewing such practices in people with
chronic illnesses, among three distinct Malaysian ethnic groups, “i.e. Malay, Chinese and
Indians”; CAM use was found to be 22.6%, 32.3% and 43.6%, respectively. As can be
seen, prevalence varies between ethnic groups suggesting that culture may influence
uptake. [18] To the best of our knowledge, no exploratory studies have been conducted
to understand the beliefs and practices of CAM use among the HIV population in
Malaysia. The aim of this study was to explore the perceptions and expectations that
Malaysian PLWHA have with respect to CAM and what practices are involved in their use.
Methods
Design and setting
Although the use of CAM among Malaysian PLWHA is well-known [19], little is known
about the beliefs and practices towards CAM use; a qualitative methodology was
therefore adopted to further understand this issue as it can enable researchers to explore
meanings, examine practices, identify barriers, and discover the reasons for the success
or failure of interventions. [20] We adopted a phenomenological approach since it allows
description and close analysis of lived experience to understand how meaning is created
through embodied perception. [20]
The study was carried out according to the principles expressed in the Helsinki
Declaration, and prior to its commencement approvals by the Medical Research & Ethics
Committee (MREC) and Clinical Research Centre (CRC), Ministry of Health Malaysia
were taken. Finally, it was registered under National Medical Research Registry (NMRR)
database. Hospital Sungai Buloh, the largest referral centre for infectious diseases in the
country was chosen site for data collection. This centre is located near the large urban
area of the federal territory, Kuala Lumpur and the neighbouring state of Selangor,
Malaysia.
The Participants
In Malaysia by the end of 2013, there were an estimated 86,324 PLWHA, ever since the
first cases were reported in 1986 [21], considerable success has been achieved in
controlling HIV/AIDS epidemic. [22] However significant changing trends in disease
epidemics can still be seen as the disease spread pattern progressively shifted towards
increasing infection rates in female with male/female ratio from 9.6 in 2000 to 4.5 in 2010
to 3.7 in 2013. [21] For the present study participants were randomly selected from the
outpatient infectious disease clinics between January and May 2013. Malaysian patients
18 years of age or older, diagnosed with HIV/AIDS attending outpatient clinics at Hospital
Sungai Buloh were approached, when they came for their follow-up visits. Study
information sheets in Malay (National Language) and English languages were provided
while verbal information was also provided as per the need of the participants and finally
both written and verbal consent were obtained prior to data collection. A total of 15
patients were approached for interviews, however a saturation point was reached at 13th
interview and no new information were obtained from subsequent interviews.
Study Tool
A semi-structured interview guide was developed for the purpose of data collection with
the help of an extensive literature review and expert discussions, where list of possible
questions to assess the patients’ beliefs, expectations, understandings and practices
towards CAM were identified. Open ended question were preferred so as to provide
interviewees with a maximum opportunity to express their views and help in gaining
deeper understanding of issues. [23,24] The initial version of the draft questionnaire was
discussed among the authors; and was modified after a few rounds of discussions. In
addition to checking whether a particular given set of questions were useful in the retrieval
of objective information, pilot interviews were conducted with HIV/AIDS patients.
However, data from these pilot interviews were not included in our analysis. Finally,
specific probes identified during pilot interviews were added to the interview guide prior
to its use on study samples.
Procedure and Interview process
In-depth interviews are helpful in exploring the experiences of participants and the
meanings they attribute to them, where research often uses open-ended questions [24].
Therefore, in view of the sensitivity of the subject and socio-cultural context in-depth-
interviews were adopted for data collection. We found that Malaysian PLWHA were
sensitive in discussing their disease status even in the presence of other HIV/AIDS
patients. Interviews were conducted in the English language as the majority of
participants were comfortable with it; however the Malay language was also used for
patients who preferred it. Individual interviews lasted for approximately 25-65 minutes. All
interviews were audio-recorded and the principal investigator attended all the interviews
with the research assistant to take field notes and facilitate the interview process. The
interviews were mainly focused on study objectives while probing questions were also
used where necessary to get a more thorough understanding of the issue involved. Each
transcribed interview verbatim was then sent to the study participants for their approval.
Patient demographics along with relevant disease and treatment related data were also
obtained prior to interviews. All transcribed interviews were later subjected to thematic
content analysis and the transcripts were analysed for relevant content to identify the
emerging categories (themes). [25] In this process, we first transcribed the tape-recorded
data, and carefully read this, line by line and separated them into meaningful analytical
data. Each of these was then coded with keywords to identify key themes and patterns in
the data. All themes, initially identified by the principle investigator were subjected to an
independent review by an experienced qualitative researcher.
Results
A total of thirteen patients (PT1-PT13) with a mean age of 34.4 years were interviewed
for data collection, where the majority (46.15%) were from age group 18-30 years. Among
them, 92.31% were male, Malay (61.54%) and unmarried (84.62%). Table 1 provides
detailed socio-demographic characteristics of study participants.
Beliefs and use of CAM
1. Beliefs in effectiveness of CAM
1.1. Plausible role of CAM
Given the context of an Asian society where people strongly believe in CAM for various
reasons, many of the Malaysian HIV/AIDS patients had a strong belief in the role of CAM
in managing their overall well-being. Although most of the participants were of the opinion
that CAM can play some role in HIV/AIDS management, some denied any possible role
as they never heard of any evidence of that. This may highlight the fact that within CAM
believers and users, some people who look for evidence and sources of information or
they often discuss CAM use with their care providers. This shows the importance of
patient empowerment in the care process as well as patient-provider discussions to
understand the patient behaviour and challenges.
“I think traditional therapies do help in terms of just keeping a person healthy. Whether
you’re positive or not, it keeps a person healthy. And I think for a positive person, then of
course being healthy is really important….” (PT1)
The above quote shows PT1 clearly believes that traditional therapies can promote
health, in people living with HIV or not, and identifies that healthy living can be even more
important for those who are HIV positive.
“…it’s good. Yeah. As long as it can suppress the virus…in my body, as long as I am
healthy….For me it’s good.” (PT5)
In addition to healthy living, PT5 demonstrates his/her belief that CAM can suppress HIV
but that virus suppression is more important to him/her than just using the therapies.
“Traditional medication, I didn’t hear anything, and I didn’t believe about the traditional
medication.” (PT6)
As for PT6, there is no role what so ever of using traditional modalities in managing
HIV/AIDS, highlighting the perspective of those infected patients who strongly view ARTs
as the only available option, and not even considering CAM for symptomatic relief.
“….there isn’t, a specific evidence that is clear, that can prove that traditional treatment
can treat HIV, so for now we just follow what the doctor says…”(PT8)
Again the PT8 perspective highlighted an important aspect of greater involvement of
patient in the disease management. It also highlights the fact that most of the HIV patients
are keeping themselves updated with a hope that one day there will be a cure for this
disease.
1.2. CAM to replace ARTs
Interestingly, despite a strong belief in the potential role of CAM, many participants
viewed it to be complementary to the conventional ARTs; indicating a belief in the
efficacy of ARTs and not in using CAM alone. Participants also believed that even
those who have not yet started on ARTs and have been using CAM, will have to start
ARTs sooner or later as the disease progresses, which further highlights their positive
attitude towards ARTs.
“……if people go for alternative alone, they will eventually come back to the
conventional method, because they find no improvement, no solution. So eventually
they might think “Ok, I think I better listen to my doctor”.” (PT2)
PT2, although not totally sceptical about the potential role of CAM, still believed that
ARTs would still stay as the main course of treatment.
“….not an option. Using them together, yes it may help. It may help to burst up back
your immune system…..My perception says,….we take it as a supplementary..”(PT4)
PT4 views clearly represent what most of HIV patients believe. In his view CAM cannot
be used as an alternative to conventional ARTs, however they may be used as
complementary to perhaps provide an immune boosting effect. It does highlight the
importance of patient-provider discussion on CAM use, to keep them safe and
effective for the patients.
“..no, the doctor does not encourage; when we stop the ART medication, the doctor
doesn’t advise us to take village medication…” (PT13)
In view of PT13, the doctors never encourage them to use CAM, definitely as an
alternative. However it may also highlight important aspect of physicians
misunderstanding and non-willingness towards CAM use.
“Complementary, yeah. Because, let’s say that virgin coconut oil can cure HIV, but
I’ve friends who’s taking virgin coconut oil daily and… healthy lifestyle, but, CD4 still
drop. And he has to start the medication.”(PT4)
PT4 highlighted the fact that a variety of modalities (sometimes native to a population)
are being often used by PLWHA. This again highlights the importance of
communication between the patient and provider.
1.3. Time to use CAM
A few of the participants were of the view that CAM should be used when one’s CD4
cell counts are high or hasn’t started ARTs. However, they believed that once the CD4
cell count drops ARTs would be the best option, which displays their understanding of
how this disease works, and when should they use ARTs as the best treatment option.
This positive aspect of treatment awareness is important in dealing issues pertaining
to medication adherence.
“My CD4 counts are high, then I will use their traditional therapies…….But if my CD4
counts go down, I would definitely go on to ART.” (PT1)
PT1 was of view that the best time to perhaps use a CAM, is when the CD4 cell counts
are high or perhaps an infected individual is yet to be a candidate of contemporary
ARTs. This view may also be a reality to many HIV patients who some time delay in
commencing ARTs due to initial CAM use.
“When the time for you to start medication, you have to start with what the doctor
prescribe you. But if you haven’t start with the medication, you are free to try the…
alternative medication….”(PT5)
PT5 clearly echoed as what has been viewed by PT1. Once the doctor commence a
patient on ARTs, it is advisable for them to be compliant on these medications.
However it also highlights an important aspect that CAM use during the course of
ARTs treatment must be disclosed to the doctors.
2. Commonly used CAM
2.1. Types of CAM
HIV/AIDS patients were using or have used various types of CAM; including virgin
coconut oil, bitter gourds, pink guava, goat’s milk etc. during their course of disease.
Many of these patients were also using Ayurvedic and traditional Chinese medications
and practicing yoga as part of HIV/AIDS management. As for the reasons, the
perceived immune boosting effect was the most common reason for such practices.
“….i took this virgin coconut oil, you know they say that it is very helpful and can boost
your immune system… I heard about you know like what i said about the virgin
coconut oil… some people talk about camel’s milk or goat’s milk… also honey.” (PT2)
As mentioned before, many CAM modalities are native to certain populations,
therefore beside patients’ belief a strong cultural influence often results towards CAM
use.
“I mean I’ve heard of people doing all kinds of other treatment- Ayurvedic treatment,
Chinese treatment, I think in my case these, the two things I would do personally.”
(PT1)
In contrast to above, PT1 believed more in established health care systems including
Chinese and Ayurvedic medicines. It clearly highlights, that in the use of CAM many
of the HIV infected patients only believe in using established medicinal systems.
“….but the yoga is very good, for me, yeah, it’s not only medication, but the yoga is
…..working very well, for the people because, based on my knowledge…, HIV is…
dealing with our feelings, so once you have the yoga knowledge, your mind is very
free, and then err you can live longer…(PT6)
PT6 perspective shows an importance of overall wellbeing in managing HIV, which
include both physical and mental aspects. Therefore, HIV patients often use various
meditation techniques, beside medication use.
“…Bitter gourd can burst up your immune system….just takes when
necessaries....”(PT4)
In PT4’s view bitter gourd is a good immune boosting agent, which can be used any
time, when needed. It further highlights that immune boosting effects remained one of
the most common reasons for CAM use among PLWHA.
2.2. CAM use with ARTs
A few of the participants using CAM believed that any of its forms can be used together
with conventional ARTs and have recommended that for disease such as HIV/AIDS
one has to go for as many possible treatment modalities as possible, in order to cure
this. Also limiting such options for patients is not deemed fair by a few participants
from patients’ perspectives.
“I think they should go for both. Because I think, for people who have,….HIV, it is
better to have, not just one treatment, better go for one, two, three treatments so that
it will cure better.”(PT3)
PT3 views show the fact that PLWHA often use many treatment modalities, beside
ARTs. In their views some time using more modalities is better than relying on one.
“We cannot always give you know, one option to our patient, and we cannot persuade
or push our patient for certain treatment, it’s not right for them, as it’s not fair for them.
But still, you know, we can offer. If they… want to…, also be on other treatment, if they
opt for another treatment, so as long as there is no evidence of harm of that alternative,
so i can say…can be used together.” (PT2)
PT2 in an arguable way represented the majority of HIV patients and has raised a
concern towards greater patient empowerment and engagement in managing
HIV/AIDS. Though he viewed that it is patients’ right to decide how many treatment
options he want to use, interestingly the safety and effectiveness of modalities chosen
by the patient remained important.
3. Reasons for CAM use
3.1. To boost the immune system
The majority (8 out of 13) of the patients ranked “immune boosting effects” among the
most common reasons for CAM use. A few of them also believed that traditional
medications can even increase their CD4 cell counts.
“They are thinking that they are getting better, cause they can control, you know, their
CD4 and all that,…” (PT3)
PT3 viewed that while most PLWHA use CAM in anticipating an immune boosting
effect, many believe that with the help of CAM modalities they can control CD4 drop.
“….it really boosts their immune system; they feel really getting better with it” (PT5)
“I thought if I go to the traditional err medication, then it can increase my CD4. So, I
don’t think so…” (PT10)
PT5 and PT10 views again confirmed the very fact that immune boosting effect
remained among primary reasons for seeking help from CAM, for HIV patients.
3.2. Cultural and belief influence
Interestingly, some participants believed that HIV/AIDS patients often use CAM due
to their strong cultural or other traditional beliefs. They quoted that this practice is
common among Asians, as most Asians believes in self use of traditional medications.
“I don’t think there is traditional therapy that can cure…never heard of it…But they
might be using themselves…., it’s based on their culture as well, you know….. most
of the Asians, we all like to use self-medications and all those things…”(PT3)
PT3, though understands that CAM cannot cure HIV, believed that many Asian
PLWHA use CAM as they are being influenced by their culture of self-medication.
“….traditional treatment, it depends on the religious also lah. But then, that one is
considered a supplementary compared to that medicine being used for the HIV and
AIDS….” (PT11)
In addition to the cultural influence, PT11 also viewed that religious belief does play
an important role in seeking cure for diseases and illnesses, including HIV/AIDS. This
perhaps highlights a possible important role of religious leaders and scholars in many
societies for curbing HIV/AIDS
3.3. To curb disease symptoms
Although not many, a few participants highlighted symptomatic reliefs of HIV/AIDS
related complications as the possible reason for CAM use. This could be true as with
the disease progression, AIDS defining symptoms increases, which some time could
be perceived as the side effects due to antiretroviral treatment.
“….ART is hot……traditional medication is either very make you, your body is very
cold, and calm.” (PT6)
PT6, viewed ARTs as “Hot” medication, a general thought among people in
developing countries towards modern allopathic medicines. Hence they often require
some traditional medicines to negate this effect.
“if you feel like you might get fever,…….you need to drink barley in order for you to
reduce the…hot temperature in your body…. if you drink pink guava also can increase
your CD4….”(PT11)
PT11, clearly echoed what was highlighted by PT6, and viewed barley and pink guava
as relievers to the ARTs effects on the body. This further highlights that symptomatic
relief is another important reason for seeking help from CAM among PLWHA.
3.4. Free of side effects
Most of participants believing in the effectiveness of CAM were also living with the
belief that CAM and other form of traditional medications are generally free of any
harmful effects and hence there is nothing wrong using them with ARTs.
“I think can, because for the herbal medicine, is actually good for health. And, I think
herbal medicine is not many side effects. ART treatment is actually have many side
effect. (PT9)
PT9 highlighted a very significant aspect of poor or negative understanding towards
ARTs among PLWHA, which may be a contributing towards improper use and non-
adherence. It also signifies that fact that debilitating side effects due to ARTs, require
a constant evaluation and monitoring as well as strategies to improve overall quality
of life among PLWHA.
Discussion
The National Center of Complementary and Alternative medications (NCCAM) defines
CAM as “a group of diverse medical and healthcare systems, practices, and products
that are not presently considered to be part of conventional medicine, while some
scientific evidence exists regarding some CAM therapies”. [26] It has been widely
used among patients with chronic diseases [18,27,28], including HIV/AIDS. [19,29,30]
This study investigated the beliefs and practices of CAM among Malaysian
PLWHA. Our findings revealed a strong belief in the possible role of CAM for HIV
management, consistent with an earlier Malaysian study by Hasan et al. reported
30%-100% use of CAM among PLWHA. [19] This substantial prevalence of CAM use
among HIV population has also been reported elsewhere [15,29,31–35], including the
developed countries. [16] Remarkably, most participants believed in CAM use to
complement conventional ARTs but not to replace it, and were of the opinion that the
best time to use CAM is when ARTs are yet to be initiated. This confirms the findings
of a South African study that reported a decreased pattern with CAM use after starting
to use ARTs. [36] It is also equally important to note that participants viewed no harm
in using CAM with conventional ARTs and believed that one should use as many
therapies as possible, provided there are benefits of it. This particular aspect was
further supported by a review of published literature on CAM use among HIV
population, which reported popular adjunct use of CAM with ARTs. [37] These findings
essentially highlight a strong need towards patient-healthcare providers’
communication on the subject. Healthcare providers have to be aware of the problem
and to ensure that patients are adequately informed and educated on the right use of
CAM [38], since such communications are often found to be infrequent. [35]
In the present findings pink guava, bitter gourd, coconut, goat’s milk, Ayurvedic
medications, and practices such as yoga were found as the most commonly used
modalities. However in an earlier Malaysian study vitamin and supplements, herbal
remedies and massage therapies were reported as the most commonly used CAM
therapies. [19] Similarly, in studies elsewhere vitamins/minerals, garlic, marijuana,
herbal supplements, yoga, massage along with visits to the acupuncturist, nutritionist
and psychotherapist were found to be the frequently used CAM among these groups
of individuals. [39,40] Since a variety of traditional medications, approaches and
processes are regarded as CAM, there is no explicit list of such modalities [26];
moreover CAM practices greatly depends upon peoples’ beliefs, cultures and other
psychosocial factors. [23] Even though the recent data on CAM use among PLWHA
is promising [12], there are still issues where oral CAM can cause potential safety
issues through interactions with conventional ARTs. [11] Therefore an important
lesson to be learnt is the fact that healthcare providers should actively discuss CAM
with their patients as it may encourage valuable self-management and ensure patient
safety. [11,12] This may also highlights towards the importance of the current
knowledge on CAM among healthcare providers. [12]
Although a variety of CAM modalities are being practiced among PLWHA, certain
similarities can be found when evaluating the reasons for such practices. The findings
helped in learning the common motives associated with CAM use, where participants
generally reported alleviation of symptoms, counteracting ARTs side effects as well
as boosting immunity to complement ARTs as the most common reasons. However,
they also viewed peer influence, cultural and social beliefs and a belief that CAM is
harmless as the common factors leading towards CAM use. Interestingly, most of
these influencing aspects are similar to what has been reported in other parts of the
world. Social, cultural and governmental factors [32], alleviating daily discomforts and
side effects of ARTs [30,32], pain, symptom and stress relieves [33] as well as immune
boosting effects [41] were often regarded as the main driving forces to CAM use
among PLWHA. In this context, it is important to understand that many of these driven
factors are often aligned, with strong cultural and/or religious beliefs. [30] This makes
a strong justification as to why CAM use among PLWHA must be evaluated in the
local context where it can help strategising policies which are more applicable and
realistic to the local population.
While various lessons can be drawn from this study, the most important is the
evidence supporting CAM use. Some of these modalities are not substantiated by
scientific evidence [40,42], while many have proven beneficial in dealing particular
aspects of the disease. [12,43] In addition, a high number of HIV individuals using
various forms of CAM remained unreported to the healthcare providers and physician
in particular. [19] This puts greater emphasis on healthcare providers to engage HIV
patients in their discussion on treatment from various aspects including CAM use.
Undisclosed CAM use is known to be associated with poor adherence resulting in
inconsistent use of ARTs which may lead to issues of ART resistance [41], and
detrimental effects on viral suppression. [19] The risks of CAM use are particularly
relevant in communities with significant barriers to ARTs (e.g., stigma, transportation,
lack of medical infrastructure or medicines, HIV myths or misconceptions, etc.), and
where traditional medicines are unregulated, or herbal remedies are commonly used.
[13]
Lastly, from a therapeutic perspective, there are standing concerns of adverse drug
reactions (ADRs) between the conventional ARTs and type of CAM used [38,11,44],
especially when most studies reported an adjunct use of CAM with ARTs. [31,45] This
should also be a concern as the safety and risk factors of possible drug interactions
are frequently ignored by PLWHA, as they are much focused on various expected
benefits [42] as well as lack of knowledge on safety aspects. [46] Hasan et al. in their
study among Malaysian PLWHA reported ADRs associated with CAM use, which
warranted greater healthcare providers’ knowledge regarding the subject. [47] In order
to address this issue and to make ARTs use safer, a routine screening at the
commencement of ARTs and during follow-ups is inevitable. [33] For this pharmacists
as the drug experts could have a potential role and responsibility [48]; because
patients’ perceived lack of physicians knowledge and interests are the often found
reasons for CAM non-disclosure [49]. In addition, interventions involving both
physicians and patients may enhance communication of CAM use, avoid potential
adverse events and drug interactions as well as could enhance ARTs adherence. [50]
Study limitations:
The fact that data gathered at a clinical facility may have also influenced participants’
views towards CAM use since they were receiving care from a conventional provider
who may or may not appreciate CAM use. In addition the present study involved
PLWHA under healthcare which may not truly or entirely reflected those infected
individuals not receiving any care or living with a status of denial.
Conclusions
Evaluation of patients’ understanding and practices of CAM must be a focus on the
management of chronic diseases, including HIV/AIDS, since many treatment related
and psychosocial factors motivates CAM use among these individuals. Such
assessments at the commencements and follow-ups could play a vital role in dealing
challenges like adherence, drug toxicities and drug interactions, often affecting
adversely on the treatment outcomes.
Implications to Practice:
In view of these findings, there is a greater need of patient-healthcare providers’ routine
discussions on CAM use in context of disclosure, safety and evidence. Also the
chronicity of the disease puts greater emphasis on contextual researches on various
aspects of CAM use among PLWHA.
Authors’ Contribution:
SIA is the scientific coordinator of this study and has developed the concept and made
substantive intellectual contributions to the manuscript. All authors contributed to the
study concept and design, manuscript revision for intellectual concepts and final
approval for manuscript submission.
Financial Disclosure:
The study has no financial support or funding.
Conflict of Interest:
The authors declare no conflict of interest.
Acknowledgement:
We would like to thank to the Director General of Health Malaysia for permission to
publish this paper.
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Table 1: Socio-demographics of the study participants (N = 13)
Variables N %
Age (Mean=34.4) 18 – 30
6
46.15
31 – 40 4 30.77 41 – 50 2 15.38 > 50 1 7.69 Gender Male 12 92.31 Female 1 7.69 Ethnicity Malay 8 61.54 Chinese 1 7.69 Indian 3 23.08 Others 1 7.69 Marital Status Married 2 15.38 Unmarried 11 84.62 Education level Secondary education Diploma
5 4
38.46 30.76
Graduate 3 23.08 Postgraduate 1 7.69 Occupation Unemployed 3 23.08 Self employed 2 15.38 Private 7 53.85
Government 1 7.69 On HIV Treatment Yes 10 76.92 No 3 23.08