Accepted Manuscript

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:

SIA:sia194@yahoo.com

SASS: sazhar@usm.my

MAH: azmihassali@usm.my

KT: kaeshaelya@hotmail.com

SSH: shahzad_pharmacy@yahoo.com

CKCL:chrislee@sel.moh.gov.my

Corresponding Author: Syed Imran Ahmed Department of Pharmacy Practice School of Pharmacy International Medical University (IMU) Kuala Lumpur, Malaysia 0060-3-27317295 sia194@yahoo.com

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