Participant characteristics are included in tables 1 and 2. Sixteen PLHIV were interviewed – 8 from Bo and 8 from Freetown. The majority were female (11), adherent to ART (9) and employed (9). Four health workers were interviewed with two from each study site. Three health workers were female.
Table 1
characteristics of PLHIV in the interviews
More female in Bo population than in Freetown and more employed participants in Freetown than Bo and more female among the Bo participants than in Freetown.
Study site
|
Adherence to ART
|
Gender
|
Age (years)
|
Work
|
Total
|
|
Adherent
|
Non-adherent
|
Female
|
Male
|
24-35
|
>35-45
|
>45
|
employed
|
Unemployed
|
|
Bo
|
5
|
3
|
7
|
1
|
3
|
3
|
2
|
3
|
5
|
8
|
Freetown
|
4
|
4
|
4
|
4
|
4
|
3
|
1
|
6
|
2
|
8
|
Total
|
9
|
7
|
11
|
5
|
7
|
6
|
3
|
9
|
7
|
16
|
Table 2
characteristics of health workers in the interviews
Study site
|
Type of health worker
|
Gender
|
Age (years)
|
Total
|
|
Clinician
|
Counsellor
|
Female
|
Male
|
20-30
|
30-40
|
|
Bo
|
1
|
1
|
2
|
-
|
1
|
1
|
2
|
Freetown
|
1
|
1
|
1
|
1
|
-
|
2
|
2
|
Total
|
2
|
2
|
3
|
1
|
1
|
3
|
4
|
Facilitators and barriers to adherence to ART
The study revealed several facilitators and barriers to ART adherence at person, community and health system levels (Figure 2).
Person level
Perceived benefits of ART
Most participants were positive about the effects of ART especially when they were able to take the medication as prescribed and had regular appointments for follow-up. They explained that HIV care had improved their quality of life and health status.
“I felt very good when I started taking the medicine at the time I was confirmed HIV positive. Currently, I’m not feeling good and I am losing weight[...] I was informed at the treatment centre that my blood is low and I believe it happened because I missed my appointment for medicine pick up. Now I have started treatment and I’m beginning to feel great again”. (Non-adherent Female, Bo)
Family Support
Support from family members is essential in providing hope for survival of PLHIV as highlighted by a healthcare worker:
“so if there is strong support from the family, it will be very good. We need to pass the message to the family and relatives so that they will be able to support these people. If you stigmatize PLHIV, they will lose hope for survival. That’s why family is more important because they spend about 90-95 percent of their time with them” (Male Health worker, Freetown).
A patient also noted that it was important to have a treatment partner that will provide additional support for adherence to ART medication.
“I informed my small sister that the medication am using is for prevention and she must remember me in the morning and at night to take my medicine. She has been informing me on a daily basis.”
Denial and non-disclosure of HIV status
Many PLHIV reported that they were frightened of disclosing their HIV status to their partners for fear of their relationship ending. One woman explained that her husband gave her money and sent her back to her village:
“My husband is a soldier so I was taken to the hospital where he works. He received the test and informed me that I am HIV positive. I did not believe him initially. He said we cannot continue the relationship. He informed me that it is possible that I may have contracted the disease from my work as a hairdresser (used needle and comb). He therefore asked me to return to Bo and gave me Le150,000 (£15 or $19) as hospital cost. At the hospital, I was tested and confirmed again to be HIV positive. I was encouraged to commence medication and advised to meet the requirement of monthly appointment”
(Adherent Female living with HIV, Bo).
Many PLHIV reported not disclosing their status to other members in their family. Others spoke about being told not to speak about their HIV status with anyone as this would result in being harassed or ostracized.
“you know as for our own health condition people normally hide it. It’s not like headache that you will easily disclose. It has to be kept secret. We were advised not to disclose it to anyone because if you disclose it to people they will start pointing fingers at you that you are HIV positive. That’s why we are always advised not to disclose our status and to continue taking our medications” (Adherent Female living with HIV, Bo)
Health workers also reported that many PLHIV do not disclose their status in families, and some go to the extent of losing all their medication to keep their status a secret from their partner.
“Most of our patients do not give us the correct information about their partner […] they usually say, my husband is not here, my husband has travelled[...]someone who is married and does not disclose their status to their partner […] when it is time for that person to take their medication it becomes a problem” (Female Health worker, Freetown).
Medication issues
Some PLHIV reported that the taste and size of the medicines deterred them from keeping to the treatment regime. Healthcare workers expressed concerns about the frequency of ART leading to difficulties in adherence to the regime.
“it’s difficult to take a drug every day of your life especially with the kind of pills and the daily intake that is required coupled with other additional blood medicines” (Female Health worker, Bo).
“For me it is the big tablet […] when I started taken the medicine at first, because of the taste I usually vomit” (Adherent Female living with HIV, Bo)
Use of herbal medicines
Some PLHIV reported feeling better and stopped taking their ART with the belief that traditional herbal medications will help provide long-lasting solution but eventually became seriously ill.
“It was last year that I stopped taking the medication. This year I was asked to take HIV test again when I started feeling sick. I informed the healthcare professionals that I was using herbal medication to treat HIV” (Non-adherent Male living with HIV, Freetown).
Money for food and transport
Many PLHIV reported that they found it difficult to continue working and earning money when they were ill. This impacted on their ability to buy food which they need when they take ART and pay for transport to get to the health facilities. They relied on friends or relatives to provide food and help with transport, but often felt embarrassed to ask for help.
“The little money I had is no more and there is nothing left at the moment […] if they will help with supply or money […]so that when I regain my health i will be able to start my business and support my children” (Non-Adherent Female living with HIV, Freetown).
Healthcare workers also indicated that many PLHIV did not continue their treatment because of lack of food or money for transportation. They also reported that food was only provided for PLHIV who were underweight.
“I’m not taking the medications because I do not have food […] others will say i do not have transport […] we have a system for providing food for people with low body mass index and that is all at the moment” (Female Health worker, Freetown).
Community level
Treatment partner
Many PLHIV and healthcare workers recognized the importance of having a treatment partner to help with adherence to ART: “it is good for someone living with HIV to have a treatment partner” (Female Health worker, Freetown).
Health workers and PLHIV also recognized the importance of acceptance of partner status and prescription refill by the treatment partner.
“imagine the man is negative and the wife is positive but yet still he is here to collect the medication for the wife” (Female Health worker, Bo)
“so my daughter normally comes for my medication” (Female Health worker, Bo)
Stigma and discrimination
Many PLHIV reported experiencing stigma and discrimination because of their HIV status from family, friends and community members. They explained that HIV/AIDs is still regarded as a taboo subject, that stopped them disclosing their status, discussing care and treatment and getting help.
“Yes, initially I was staying with my husband’s relatives[...]when they discovered that I had the virus […] they started laughing at me […] they started throwing provocative words at me, they don’t even give me food to eat and they finally asked me out of the house (crying) […] Just look at me, my hair is not even neat because I don’t have someone to do it for me”. (Adherent Female living with HIV, Bo).
Some PLHIV stated that frequent ailments and weight loss is associated with HIV by their community, and when they start ART and put weight on they are accepted, as one person explains here:
“Initially when I got the disease, my friends were not talking to me properly because I was constantly losing weight but now they feel free to talk to me and they come closer to me. Thanks to God for that […] I didn’t inform them about my condition […] they would have been afraid of me if I had informed them earlier of my status.” (Adherent female living with HIV, Bo).
PLHIV also reported fear of discrimination in the workplace, and therefore did not disclose their HIV status to their employer or colleagues, and changed their times for medication:
“initially I was taking my medication at 9 O’clock but then I noticed that it will give me problem at my work place […] I decided to take it before leaving my house.” (Non-adherent Female living with HIV, Freetown).
Health care workers also reported many examples of PLHIV experiencing stigma and discrimination such as lack of support, fear of death and not sharing toilets and items such as cups and cutlery. This influenced how PLHIV were able to access and adhere to ART, as well as having profound effects on their mental health.
“Look at this lady for example she came this morning crying […] she is staying with her mother. This is what she said, my mum said I’m going to die soon. She came crying and I told her to wait for me for a while and all these days she has been coming here saying that her mum hasn’t been supportive to her […] She said If my mum is not ready to support me how will I survive?” (Female Health worker, Freetown).
Work barriers
Most participants reported improvement in their health when they were taking their medication. However, many found it difficult to take the drugs regularly when they were working and often missed their medication during work hours.
“well the medication is good because if you are on medication for a certain illness and you see improvement then it’s good [….] I miss my medication when I go out for work “(Adherent Female living with HIV, Bo).
PLHIV faced discrimination in the workforce (as described above) and a woman spoke about losing her job because her employer observed her taking medication at the same time every day.
“when I am taking the drug, they are watching me […] I was informed that If I know that I have a disease and I am taking a drug let me be careful […]so when it’s time to take the drug, I would think of my life and my only daughter […] So, I would usually take the drug. Later I was then dismissed from my duty” (Non-adherent female living with HIV, Freetown)
Health system
Free medicines
Healthcare workers emphasized received ART free and also mentioned the importance of ensuring that ART continue to be free for PLHIV in LMIC, as the high cost of these drug would prohibit uptake by PLHIV.
“I think when it comes to the fight of HIV, I think the medication should be free. So, if the medication is free it will help most of our clients[...]the cost of their medication is too high” (Female Health worker, Freetown).
Good relationships with health workers
PLHIV reported the existence of good interaction with healthcare workers involved in their treatment. They mentioned that health workers encourage them to take their medications attend clinic and reassure them to take their medication to maintain good health and wellbeing.
“They treat me well and they also encourage me. The first day that I came to the hospital I was so discouraged but the nurse talked to me and really encouraged me” (Adherent Female living with HIV, Bo)
Limited numbers of skilled health workers
Healthcare workers expressed concerns about the burden created by the small number of health staff working with PLHIV. They mentioned that this will allow them to spend more time in reviewing the wellbeing of patient, while allowing other staff to focus on drug-therapy related issues.
“I will love to have another staff that would help us to assess patient (Female Health worker Bo).
Lack of medicines and tests
Healthcare workers reported a lack of ART medicines and test kits that are used in caring for PLHIV. They explained that drugs and test kits are provided by donor organizations, and that there are frequent delays in procurement.
“…in terms of HIV care you go anywhere there is the issue of drug stock out and [….]test kits shortage are all the problems we encounter” (Female Health worker, Bo).
Distance to health facilities
PLHIV reported that they had long distances to travel to the ART clinics. In Bo, people would travel at least 30 minutes, and this would cost about £1. In Freetown, people would travel for an hour to reach the clinic, which would cost them about £2. The average weekly wage in Freetown is about £3.4 for workers that participated in this study or nothing for those without a job. They requested for ART services to be closer to their homes.
“They need to bring the health facility closer to my community, if it is possible because there is no health facility where I live” (Adherent Female living with HIV, Freetown).