Themes saturation was reached at 16 participants. Of the sixteen participants, ages ranged between 21 and 64 years (mean age=45.5 ; SD=11.14 years), had primary-level education (n=11, 68.75%), were self-employed (n=9, 56.25%), and were taking ART for more than 6 years (n=11, 68.75%). Additionally, half of participants were female and lived less than 11 kilometers from their CTC (Table 1).
Table 1: Characteristics of Qualitative Interview Participants
|
Participants (N=16)
|
Demographics
|
|
Age (N, %)a
|
|
18-25
|
2 (12.50)
|
26-35
|
0 (0.00)
|
36-45
|
5 (31.25)
|
46-55
|
6 (37.50)
|
56-65
|
2 (12.50)
|
≥66
|
1 (6.25)
|
Sex (N, %)
|
|
Female
|
8 (50.00)
|
Male
|
8 (50.00)
|
Marital status (N, %)b
|
|
Married
|
4 (25.00)
|
Previously married
|
7 (43.75)
|
Never married
|
5 (31.25)
|
Education (N, %)
|
|
Primary
|
11 (68.75)
|
Secondary
|
5 (31.25)
|
Occupation (N, %)
|
|
Employed
|
3 (18.75)
|
Self-employed
|
9 (56.25)
|
Unemployed
|
4 (25.00)
|
Distance to clinic (N, %)c
|
|
0.0-10.9 km
|
8 (50.00)
|
11.0-20.9 km
|
3 (18.75)
|
21.0-30.9 km
|
2 (12.50)
|
31.0-40.9 km
|
1 (6.20)
|
≥41.0 km
|
2 (12.50)
|
Clinical Characteristics
|
|
ART duration (N, %)
|
|
1-2 years
|
2 (12.50)
|
3-5 years
|
3 (18.75)
|
≥6 years
|
11 (68.75)
|
Viral load suppressiond
|
|
Achieved suppression
|
11 (68.75)
|
Failure to achieve suppression
|
1 (6.25)
|
Missing
|
4 (25.00)
|
Abbreviations: ART, antiretroviral therapy; km, kilometers
Demographic and clinical characteristics were self-reported or pulled from medical records.
a Age is an estimate based on participants’ recollection of their date of birth.
b The Married category includes participants that reported being married or cohabitating and the Previously Married category includes participants that reported being separated, divorced, or widowed.
c Distance to clinic is defined as the travel distance from the participant’s residence to the HIV care and treatment center (CTC).
d Failure to achieve viral load suppression is defined as HIV RNA level ≥400 copies/mL.
Common themes identified included the reasons for self-repackaging, perceived benefits and challenges of current ART packaging, and recommendations for improving ART packaging moving forward (Table 2).
Table 2: Summary of Qualitative Themes Related to Self-Repackaging, Current Benefits of Antiretroviral Therapy (ART) Packaging, and Proposed Modifications to ART Packaging
Themes and Sub-themes
|
Participants
|
Illustrative Quotes
|
Reasons for self-repackaging
|
14
|
|
Challenges with current packaging
|
14
|
|
Size/bulkiness
|
11
|
I throw away the box because I think it’s too big and my handbag is small. If I put the medicines with the box there won’t be sufficient space in my handbag.
|
Easily identifiable
|
14
|
I put them [ARTs] in the plastic bag before putting them in the handbag…because I am worried everybody knows the medicines.
|
Rattling noise
|
10
|
The only problem I see with the container is the noise made by the medicines, which everyone can hear. It makes me feel uncomfortable.
|
Influenced by others
|
2
|
I usually remove the box and go with the bottle just like the way I see other people doing.
|
Relationship between self-repackaging and perceived adherence
|
7
|
|
No relationship
|
4
|
There is no connection, because there is a special time to take the medicines. Carrying is different from taking them, plus you take the medicines when you reach home.
|
Relationship
|
6
|
If someone is repacking the medicine, they might forget to take them because they might not remember where they kept the medicine, or they might be afraid of taking them when they are with other people.
|
Benefits of current packaging
|
13
|
|
Instructions/information
|
2
|
I like to take the medicines in their original box, because I am interested to know about the expiry date.
|
Maintain effectiveness
|
13
|
…the bottle is sealed; this means the medicines are well-packed and no water or air can go inside. Thus, they [ARTs] cannot be easily damaged.
|
Influence medication taking
|
1
|
I think when the medicines are in the bottle it becomes easy to remember taking them.
|
Recommendations for patient-centered packaging
|
13
|
|
Keep current packaging
|
4
|
I think they [ARTs] are well-packed; there is no need to change [the packaging].
|
Modify current packaging
|
9
|
If it’s possible, can they put something like cotton [in the bottle] so the medicines will not make noise.
|
Alternative packaging
|
6
|
I believe if the medicines were blister packed it could make it much easier to take the medicines…it would help those who have no pouch; you can just take them home holding them in your hands.
|
Abbreviations: ART, antiretroviral therapy
a Participants often provided scenarios where self-repackaging could or could not be related to ART adherence (e.g., self-determined patients could be adherent, but other patients may get confused by or forget to take repackaged ART).
Perceived Challenges with ART Packaging and Self-Repackaging
Participants universally acknowledged that repackaging of ART was a common practice among PLWH, and that many individuals would immediately pause outside of the clinic to transfer their medication to other containers. The most commonly cited reasons for repackaging were to hide the medication or make them visually unidentifiable as ART. Participants stated that the manufacturer’s packaging was too visually distinctive and easily recognizable. As a 47-year-old female participant shared, “It is easy for people to recognize the ARTs when they are in their boxes. Even a child can recognize them.”
Aside from concerns about others visually identifying the medication as ART, some participants noted that the packaging was too bulky, so they would transfer the pills to a smaller pouch (e.g., handbag) that they could carry without drawing attention to them. Some participants stated that they used plastic bags to reduce the noise produced from rattling pills inside the manufacturer-provided bottles. For example, as a 75-year-old male participant shared, “if the medicines are in the bottle, it’s a normal thing to produce some kind of noise and this is not for ARTs only, it’s for all other types of medicines.”
Participants readily attached the practice of repackaging to internalized stigma associated with their HIV, as well as anticipated stigma from others. One 75-year-old male participant shared, “Some of us stigmatize ourselves, thinking that if people will see us carrying the medicines in the box, they will know that we have HIV.” Another 60-year-old female participant spoke about her concerns regarding stigma from others, “If people see [the pills], they will not respect the person who takes the medicines because they will know your status.” The necessity of repackaging was also commonly described as being dependent on the context of the patients’ lives and their perceptions of whether others would be accepting of their HIV status. As one 47-year-old female participant commented, “Maybe they are afraid to be stigmatized. You know people live in different circumstances, so it depends on the community that the person lives in, and how they perceive the problem.”
Anticipated stigma may be stronger among PLWH who were recently diagnosed and who have not yet disclosed their HIV status. “There are some patients who don’t like to be seen by others; they hide themselves even while at the clinic. They hide because they are afraid to be seen by the people they know, especially if it’s their first time” (42-year-old female participant).
Perceived Benefits of Current ART Packaging
When asked whether the manufacturer-provided packaging was advantageous, a majority of participants felt that the packaging maintained the integrity of the medication and its effectiveness. Participants commonly noted that the manufacturer-provided bottles sealed tightly, preventing the pills from being exposed to moisture or contaminants. As one 75-year-old male participant stated, repackaging “can affect the quality of the medicines and the health of the person who takes the medicines, because if the medicines have been repacked and are not kept in a proper bottle, that can allow water or air to come into contact with the medicines.”
In addition, some participants felt that the bottle kept the pills secure and prevented them from getting lost or damaged. A small number of participants also indicated that they liked that the current packaging had clearly printed expiration dates and usage instructions, and that the pill bottle acted as a visual reminder to take their medication.
Several participants noted that clinic staff had specifically warned them against repackaging, which led them to discontinue the practice: “The health workers advise us not to repack the medicines because, if we do so, we will make the medicines be less efficient” (50-year-old male participant). However, despite these warnings from healthcare providers, most participants stated the practice of repackaging remained common and ultimately was the patient’s choice. For example, one 60-year-old female participant shared, “You know we are human beings and we are all different. People do different things for different reasons, but we are all adults. We were told the disadvantages of repacking the medicines and we understand them, but still people repack. What can be done then?”
Relationship Between Self-Repackaging and Perceptions of ART Adherence
When asked whether self-repackaging of medications might influence adherence, several participants agreed that the two might be related. For example, one 25-year-old male participant cited that for patients who take more than one medication, repackaging may lead to mislabeling of or confusion about the pills: “There are patients who are supposed to take two drugs in a day, morning and evening. So, if you repack, how are you going to remember which ones to take?”
Many participants minimized the possible connections between self-repackaging and adherence, instead emphasizing the patient’s self-determination as the key factor to adherence. A 47-year-old male participant shared, “There is not any relationship between the way the medicines are packed and taking them. If someone commits to taking the medicines as prescribed, it doesn’t matter how the medicines are packed.”
However, several participants felt there was a strong connection among the concepts of stigma, repackaging, and adherence, indicating that the same stigma that leads to self-repackaging may also influence the participant’s adherence: “If the person is repacking the medicines because he is afraid that other people will know that he is having HIV, this can affect the way he takes the medicines. Because if, for example, it’s time to take the medicines and there are people present, this person will be afraid to take them because he will be thinking the people, he is sitting with will know that he has HIV. In this way he will not be taking the medicines as prescribed” (75-year-old male participant).
Recommendations for Patient-Centered ART Packaging
Participants were asked how the manufacturer’s packaging should be changed to meet their needs. Nearly all participants indicated that they would prefer to receive the pill bottle only, because the box is bulky and easily identifiable. One 50-year-old male participant stated, “I think they should remove the box because of its size. If they remove the box, the bottle will not be easily seen, especially for men who like to put the medicines in their trouser pockets.” Aside from removing the box entirely, participants often indicated the box should be smaller and more nondescript so that others cannot easily identify the medication at first sight.
Participants shared that many PLWH immediately discarded the box in the trash bin upon leaving the clinic. Several noted that they started this practice after observing others at the clinic doing the same: “When I came here the first time, I saw other people removing the box and I decided to do the same” (47-year-old male participant). By contrast, some participants described the inconvenience of having to discard the box once they reached home. For example, one 25-year-old male participant described having to burn the box and keeping the pill bottle after his clinic appointment so that others in his family would not see it.
Although perceived as more acceptable than the box, several participants also disliked the pill bottle, saying it was were too large, noisy, and conspicuous: “I think the major reason is the size of the bottle. Sometimes when you walk the medicines will make noise, so you will be afraid because you haven’t accepted your [HIV diagnosis]” (44-year-old male participant). Due to these concerns, participants suggested either packaging ART in smaller containers or including material in the pill bottles (e.g., cotton) to stifle or prevent the rattling noise.
Some participants felt it would be ideal if the pills were given in a “small pouch” which would be easy to carry in a pocket or handbag without rattling. One 37-year-old female participant raised the possibility of monthly ART injections, stating this would allow them to receive their medication at the clinic and eliminate the risk of unwanted disclosures in their daily lives. Many participants had encountered blister packaging when taking other types of medication and felt that this type of packaging would be much more desirable than the current bottles. As a 44-year-old male participant noted, “I would suggest the medicines be given in blister packs. Blister packs are transparent, but they are well packed. This will make them easy to carry and patients will feel comfortable to put them in their bag because they do not make noise.”