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.
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 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.