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\begin{document}

\title{A QUALITATIVE ASSESSMENT OF HIV PATIENTS' ADHERENCE TO TREATMENT AND THEIR NEED FOR PHARMACEUTICAL CARE SERVICES IN JORDAN}



\author[1]{Yara Al Tall}%
\author[1]{Tareq Mukattash}%
\author[1]{Huda Sheikha}%
\author[2]{Anan Jarab}%
\author[2]{Mohammad Nusair}%
\author[3]{Rana Abu Farha}%
\affil[1]{Jordan University of Science and Technology}%
\affil[2]{Affiliation not available}%
\affil[3]{Applied Science Private University}%


\vspace{-1em}



  
  \date{May 02, 2024}


\begingroup
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\selectlanguage{english}
\begin{abstract}
Objectives: The objectives of this study were to assess the barriers to
treatment adherence and need for pharmaceutical care services among HIV
patients in Jordan.

Method: This is a qualitative in-depth interview study. Participants
were recruited with the assistance of a Non-governmental organization
specialized in HIV patients. Fifteen patients were interviewed using a
pre-designed interview guide. Recorded interviews were transcribed
verbatim, and de-identified prior to analysis. Results were then
imported into QSR International's NVivo 11 Software.

Results: Three main themes emerged from the interviews. Those included
patient-related factors, medication-related factors and Healthcare
professional related factors. This study found that a number of barriers
that decreased adherence in HIV patients included stigmatization, fear
from disclosure, dosage form of the drug, adverse events, and poor
cooperation from healthcare professionals. On the other hand, supporting
factors included family and friends support, electronic mobile
reminders, feeling responsible to raising children, religious beliefs,
and feeling improvement while using therapy. Furthermore, the study
illustrated that HIV patients need to have a specialist pharmacist in
their healthcare team who delivers specialized pharmaceutical care
services which may increase patients' adherence.

Conclusion: Adherence to HIV treatment is subjective and related to
various barriers and supporting factors. Participants reported a strong
need for pharmaceutical care services, HIV specialized pharmacists, and
a pharmacist that treats them with empathy and understand what they are
going through. There is still a need to develop educational programs and
implement proper counseling in order to improve Jordanian pharmacist
awareness about HIV disease and treatment options.%
\end{abstract}%



\sloppy


\textbf{Introduction}

HIV is the major cause of AIDS which is a chronic, potentially
life-threatening immunodeficiency disease 1. Thus, making those patients
more susceptible to have opportunistic infections and cancers 2.

According to the Joint United Nations Programmer on HIV/AIDS (UNAIDS)
data, the prevalence of HIV in the global world was estimated 36.9
million people, 940,000 patients of them died of AIDS-related illness in
2017. Adding to that, 66\% of the cases were reported in Sub-Saharan
Africa and the vast majority of the people living with HIV disease were
located in low- and middle-income countries 3. Furthermore, 18,000
patients were living in the Middle East and North Africa 3. Apart from
the international statistics, the total number of HIV/AIDS cases were
registered in Jordan were 1,080 patients since 1986, as reported by a
health ministry official in 2014. Over the last 28 years, 65.29\% of
patients had the disease via sexual intercourse, 22.68\% through blood
transfusion and 2.41\% by drug injection. However, a rising in new
incident cases is noticed; 54 new cases were reported in 2014 4, 92 new
cases were reported in 2015 5, and 103 new cases were reported in 2016
6.

Treatment failure is common among HIV patients 7,8. Poor adherence was
strongly associated with virological failure among patients on ART 9,10.
HIV/AIDS patients should have an adherence level of at least 95\% as a
requirement for optimizing ART and maximizing virological suppression
11.

Several factors were found to affect adherence to ART, including
psychological reactions such as depression, disappointment, hesitation,
forgetfulness, and exhaustion, perceived support, contradictory beliefs,
and environmental barriers. Moreover, medications' side effects were
found to affect HIV patients' adherence 12. Meanwhile, disclosure of HIV
status, social support, use of reminders, life-long projects, counseling
and education, and improved health on ART facilitated medication
adherence and retention in HIV care 13.

Forming a good patient-provider relationship can enhance adherence 14.
It has been proved in the literature that there is a paradigm shift from
a `detached paternalistic relationship towards a more empathetic,
patient-centered model of care' 15. The patient-centered model of care
is the cornerstone of pharmaceutical care 16. Pharmaceutical care is
defined as'' the responsible provision of drug therapy for the purpose
of achieving definite outcomes that improve a patient's quality of
life'' 16.

A new pharmaceutical care model, known as Ability-Motivation-Opportunity
(AMO) has been developed 17. In this model, healthcare providers should
have the ability to provide individualized pharmaceutical care to each
patient, as well as they should be able to motivate the patients to
reach goals with drug therapy. Finally, they should have the proper
opportunity to provide pharmaceutical care with personal consultations,
through information, communication, and learning technologies. With this
approach the results were satisfying and assisted patients to take
better care of themselves, following their treatment, determining goals
to control their disease 17. Based on the above evidence, this research
aimed to find the barriers and facilitators of adherence to ART among
HIV positive patients in Jordan and to assess their need to
pharmaceutical care servides.

\textbf{Methods}

Study Design and Setting

This study is an exploratory qualitative study that aimed to describe
pharmaceutical care needs for HIV patients in Jordan using in-depth
interviews. The study was conducted at Forearms of Change Center over 8
months period starting from March 2019 to September 2019. The Forearms
of Change Center encourage HIV/AIDS patients in Jordan to cohabit with
their disease and give them positive support and help. The study's
protocol was approved by the Institutional Review Board (IRB) at Jordan
University of Science and Technology (reference number: 7/124/2019).

Study Participants

HIV patients attending the Forearms of Change Center were invited to
participate in this study. One researcher identified potential
participants that met the inclusion/exclusion criteria and explained the
study objectives and procedure. The inclusion criteria were: patient's
[?]18 years old, HIV positive and receiving ART. Patients who were on ART
for less than six months and non-Jordanian residents/citizens were
excluded from the study. Written informed consent was obtained from all
participants and they were informed that their participation is
voluntary, and they can withdraw at any time. Participants were given
alphanumeric code to refer to interviewees' identification and ensure
anonymity in the study. For example, the alphanumeric code P1F35
indicates that the participant number 1 is a 35 years old female.

In-depth interviews

Participants were offered to conduct the interview over the phone or
face to face. Each session took between half an hour to one hour,
utilizing a semi-structured questionnaire, so open and semi-structured
questions were used in the interviews. Face to face interviews were
conducted in private rooms to avoid any interruptions or distractions
and to make participants comfortable. All interviews were conducted in
Arabic to ensure participants' understanding of interview questions and
expressing themselves in their native language. All interviews were
audio-recorded and later transcribed.

The interview questions were developed after reviewing pervious
literature 12,13,18,19, followed by rounds of reviews and discussions by
all authors. The interviews started with questions to elicit
socio-demographic information and history of illness followed to a set
of questions that explored: 1) HIV patients' compliance to medication
therapy, 2) HIV patients' perception and needs of patient care provided
to them.

Analysis

Recorded interviews were transcribed verbatim. Transcripts were reviewed
to explore: HIV patients' facilitators and barriers to ART compliance
and HIV patients' perception and needs of patient care provided to them.
Thematic analysis was performed on the transcripts by two authors.
Discrepancies were resolved by consensus. Transcripts was stored and
organized using QSR International's NVivo 11 Software. Descriptive
statistics were used to analyze quantitative data, and the results are
presented as percentages and frequencies using the Statistical Package
for Social Sciences (SPSS) version 25.

\textbf{Results}

A total of 18 HIV patients participated in this study. However, three
participants withdrew from the study. The mean age of the remaining 15
participants was 37.53\selectlanguage{ngerman}± 7.67 years and 60.0\% (n=9) were males (Table1).
Participants had a mean duration of cohabitation of 10.2 years and have
on medication therapy for 8.7 years. Nearly all participants were taking
Stribild\selectlanguage{english}? (elvitegravir, cobicistat, emtricitabine and tenofovir) with a
mean of 806.4 +- 313.2 CD4 cell count (Table 1).

\textbf{Thematic Analysis}

\textbf{Compliance to ART}

Two overarching themes described factors related to participants'
compliance to ART: patient-related, and medication-related (Table 2).
These factors were not always a motivator or a facilitator for a better
compliance, some of these factors were reported as a barrier as well.

Patient-related factors

In this overarching theme, participants reported factors related to
their own self-motivation and self-efficacy that ultimately describe
their compliance to ART. These factors included the following three
sub-themes: \emph{psychological reactions, family and friends, and
routines \& reminders.}

\emph{Psychological reactions} : Participants reported a wide range of
emotions that positively or negatively affected their compliance to ART.
Stigmatization was frequently mentioned by participants as a factor that
negatively affected their compliance as they avoid taking their
medications in front of others. The fear of being judged by others led
some participants to hide their medications and only take their
medication when they were alone.

In one extreme case, participant reported that HIV patients can fear for
their own lives if they were ever caught taking ART. However, fear was
not always an emotion that negatively influences compliance. Some
participants reported that their fear of transmitting the disease to
others was a motivator for a better compliance.

Participants also reported positive emotions that contributed to their
ART compliance. Self-confidence was among these emotions. Some
participants reported that their self-confidence positively influenced
their coexistence with HIV infection, and the willingness to be strong
which ultimately increased their adherence to ART. Participants'
self-consciousness of their well-being also motivated them to regularly
take their medications\emph{.} One participant expressed his happiness
for being HIV positive because he became more interested in taking care
of himself and his own health.

\emph{Family and friends:} Getting support from family or friends
motivated participants to regularly take their medications. Families'
support was not limited to reminding participant to take their
medications, it also influenced participants' compliance to follow up
visits to their physicians and lab tests. Children were another source
of motivation for participants who have children. Participants with
children reported they are always thinking about their children and
their constantly remind themselves that they have to live longer to be
there for their children. Two participants were concerned about
transmitting the infection to their children if they did not adhere to
therapy.

Despite that some participants did not inform their families about their
infection, some chose to share it with their friends. Friends support
appeared to influence participants' attitudes toward their infection and
ultimately their compliance to therapy.

\emph{Routines \& reminders} : A few participants reported that they
rely on a daily routine to remind themselves to take their medications.
Another participant reported. Other participants chose to put their
medication in a place where it is always checked or use a phone alarm.

Medication-related factors

This overarching theme included three sub-themes: \emph{adverse events,
medication benefits,} and \emph{inconvenience} .

\emph{Adverse events:} Nearly half of the participants were complaining
about the side effects of the drugs (e.g., vomiting, diarrhea, and
vertigo)\emph{.} Some patients suffered from hallucinations and insomnia
forced them to stop their medication. One participant reported that he
suffered from drowsiness and after taking his medication falls asleep.
Other patients refused to take their medications because of fat
deposition in the abdomen area and the extremities become lean, this
leads bodybuilding patients to keep away from taking drugs and the price
was their life.

\emph{Medication benefits} . Living a long healthy life with no fear of
suffering from the complications of HIV infection was a one factor that
encouraged participants to be compliant with ART therapy. Participants
reported that their CD4 cell count and viral load improved after taking
their therapy and their body weight becoming better. All of these
benefits motivated participants to adhere to their therapy.

\emph{Inconvenience} . The majority of participants reported the
inconvenience of taking bills every day. Some patients had to take
numerous pills every day which influenced their attitudes toward
adherence. Similarly, participants who were taking one tablet daily
reported inconvenience.

\textbf{HIV patients' perception and needs of patient care}

The second part of the interview resulted in three main themes that
describe participants' perceptions of the level of patient care provided
to them and their needs for a higher level of patient care. These themes
are: \emph{Inappropriate care, the need for pharmaceutical care and
specialist HIV pharmacist} (Table 3)

Inappropriate care

Participants reported that their HIV health care team are not
cooperative and sometimes they often feel neglected. Some participants
believe that their healthcare professionals do not have sufficient
knowledge to manage and follow up with HIV patients

Participants also reported that they often stigmatized by health care
professionals. It is difficult for patients' to accept their illness and
adhere to therapy if they do not get proper care from their healthcare
proffesionals. Some participants reported that some healthcare providers
fear treating them. This rejection by healthcare professionals pushed
some participants not to inform healthcare professionals about their
infection

The need for pharmaceutical care

Almost none of the participants were familiar with pharmaceutical care
prior to the interview. The majority of participants reported that they
did not have a pharmacist in their healthcare team.

The majority of the participants had poor knowledge about pharmacists'
role in the health care team. Most of the participants believed that
pharmacists' role is limited to dispensing medications. One participant
seemed to have adequate knowledge of pharmacists' role All participants
agreed that do not receive adequate patient care and empathy from their
pharmacists. Moreover, participants reported that pharmacists hardly go
over directions on how to take medications and do not discuss any
follow-up plans with them.

Specialist HIV pharmacist

Participants had positive attitudes and agreed to have a specialist HIV
pharmacist part of their healthcare team. Participants highlighted the
importance of having a pharmacist with knowledge and expertise in HIV
therapy to ensure safe and effective therapies

A few partipicants reported that they are not receiving adequate
pharmaceutical care from their pharmacists which negtively influenced
their views on pharmacists' role in patient care

According to the participants, the presence of a specialist HIV
pharmacist in their health care team and implementation of PhC may
positively influence the adherence of the patients to their
treatment\emph{.}

\textbf{Discussion}

This study explored HIV patients' facilitators and barriers to ART
compliance in addition to their views, perceptions and needs of patient
care provided to them. The thematic analysis results identified key
barriers for HIV patients' compliance and suggest inappropriate
patient-care and discrimination against HIV patients in Jordan.

Two major themes related to patients' compliance to ART have emerged
from the obtained data: patient-related, and medication-related. Each
theme branches to sub-themes, either facilitate or obstruct the
medication adherence. Patient-related factor that contains sub-themes
such as psychological reactions, family and friends support, and
reminders. In which, stigmatization, fear, happiness, strong beliefs and
self-confidence are the main factor identified among psychological
reactions sub-theme. Stigmatization creates a great challenge for HIV
patient, arise from the perception that HIV persons are scared to be
asked about ART medications or they fear if someone has knowledge about
these therapies. This was agreed by many different studies, where
patients fear to take the bill in front of other people such as their
work colleague to avoid being expelled from their job20,21. People
living with a high level of stigma are 3.3 times more likely to be
non-adherent to ART therapy than from people with a low level of
stigma22. Whilst stigmatization was frequently mentioned as a complex
phenomenon to decrease medication adherence, happiness, strong beliefs
and self-confidence were reported as facilitators for adherence.
Surprisingly happiness, which was mentioned by a few participants is
that the infection making them more caring for their health status.
Moreover, being one of the infected persons gives him/ her the chance to
help other HIV persons\emph{.}

As been observed from this study having family and friend support adds
on to patient satisfaction and can invoke participant adherence. The
participants highlight the importance of the friend's support since its
difficult most of the time to tell the family about their infection.
Having support from their friends helped them to rise again and being
stronger; which is illustrated in other literature23,24.

Apart from family and friend support, reminders are identified as an
important facilitator for adherence. Having the advantage from
associating ART therapy with a repeated habit such as lunch or putting
the drugs on a place where is always checked for assuring the drug had
been taken enhance their adherence; which in fact generally consistent
with the findings of Bezabhe \emph{et al.} a qualitative study conducted
in Ethiopia on twenty-four patients, where the use of electronic devices
such as mobile phone and alarms, helped AIDS patients to take their
drugs without the need of others reminding 13.

Medication-related factors were found to have a contrasting effect on
adherence. Regarding the side effects; suffering from a number of side
effects such as vomiting, diarrhea, vertigo, fat deposition,
hallucinations, insomnia, and drowsiness negatively affects patients'
medication adherence. This was in line with a previous study where 27\%
of AIDS patients afraid from the side effects of the drugs25. Also,
another study recruited 3414 antiretroviral-naive HAART patients
revealed that 628 patients (18.4\%) have discontinued their regimen
because of drug toxicity26.

Living a long healthy life, away from relapses of the health status or
suffering from other diseases that may occur because deterioration in
the immunity, was a critical factor that encourages the patient to keep
on with ART therapy. The patients noticed that their CD4 cell count and
viral load improved after taking their therapy and most of the patient
body weight relatively increased. All these improvements motivate the
patients to continue their therapy. This was also found in previous
studies27,28.

Finally, participants complained about the number of bills that were
taken, the continuity on therapy for long life and taking the drug
daily, the pharmaceutical form of the drug and the need for special
storage conditions for certain forms such as the jell. All of which make
the patients feel disturbed. In fact unfortunately not mentioned or
highlighted in the literature previously.

Notably, no study was conducted to assess awareness and knowledge
regarding pharmaceutical care among such population in Jordan.
Consequently, this study was implemented to better understand the type
of pharmaceutical services HIV patients received. Sadly, the vast
majority of the participants said that they didn't have a pharmacist in
their healthcare team, while in fact there is a pharmacist in their
healthcare teams. Unfortunately, according to the participants the only
services the pharmacist provides are just dispensing medication and the
vast majority didn't know what the pharmacist roles are. All of the
participants agreed that there are insufficient pharmaceutical services
provided, with little or even sometimes no respect for those patients,
which is actually contrasts the ultimate goal of the application of
pharmaceutical care 29.

The present study illustrated that when the participants were asked ``Do
you need an experienced pharmacist and expert medication to follow your
treatment, medications, and doses?'' the participants demonstrated a
positive attitude and overall agreement which was observed when they
were provided a suggestion about the presence of the specialist
pharmacist in HIV. According to the participants, the presence of a
specialist pharmacist in their health care team and the implementation
of pharmaceutical care may positively influence the adherence of the
patients to their treatment. This was consistent with other studies
which concluded that applying pharmaceutical care services shown
positive outcomes with improving medication use, adherence, and
surrogate outcome30-32. Pharmaceutical care services were found to give
the pharmacists the opportunity to improve HIV patients adherence rate
and to enhance treatment response with higher CD4 percentage 32.

Among the strengths of this study, is that it was the first study
comprehensively examine the effect of several factors that affect ART
therapy adherence among HIV Jordanian patients. However, there are some
methodological limitations. One of the limitations of this study was the
fact that most of the HIV/AIDS patients were unwilling to take part in
the interviews due to fear of their disease being revealed and its
consequences like stigma and being boycotted due to the country's
cultural attitudes, whilst when the participants were assured that their
data would be kept confidential in all stages of this research and that
they were free to withdraw from the interviews whenever they decided not
to continue, this limitation was resolved to some extent. Moreover, we
were challenged with a small sample size, firstly this is a qualitative
study and it is known that usually, a small sample is recruited,
secondly, our tradition and fear from disclosure decrease the
participant's motivation to be one of the volunteers.

\textbf{Conclusions}

In conclusion, the results of this study provide preliminary data about
the factors affecting medication adherence among HIV Jordanian patients
and their level of awareness and perception toward pharmaceutical care.
From the collected results we noticed that adherence to the treatment of
HIV is not constant and mono-dimensional but is a function of different
factors. Hence, the infected individual may show feeble adherence in a
specific time and under specific circumstances having desirable
adherence under a different circumstance. Thus, the treatment of people
living with HIV needs psychological supports in addition to ART therapy.
Nevertheless, there is still a need to develop educational programs and
implement proper counseling in order to improve Jordanian pharmacist
awareness about HIV disease and treatment options.

\textbf{Conflict of interest}

None of the authors have any conflict of interest.

\textbf{Funding}

None

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\textbf{Hosted file}

\verb`Table 1. Socio-demographic characteristic of the participants.docx`  available at \url{https://authorea.com/users/287165/articles/411790-a-qualitative-assessment-of-hiv-patients-adherence-to-treatment-and-their-need-for-pharmaceutical-care-services-in-jordan}

\textbf{Hosted file}

\verb`Table 2. List of themes and sub-themes in relation to compliance to ART.docx`  available at \url{https://authorea.com/users/287165/articles/411790-a-qualitative-assessment-of-hiv-patients-adherence-to-treatment-and-their-need-for-pharmaceutical-care-services-in-jordan}

\textbf{Hosted file}

\verb`Table 3. List of themes and sub-themes in relation to HIV patients\selectlanguage{english}' perception and needs of patient care.docx`  available at \url{https://authorea.com/users/287165/articles/411790-a-qualitative-assessment-of-hiv-patients-adherence-to-treatment-and-their-need-for-pharmaceutical-care-services-in-jordan}

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