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Medicine Non-adherence: A New Viewpoint on Adherence Arising From Research in Sub-Saharan Africa

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08 March 2024

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11 March 2024

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Abstract
Adherence is vital for medicine to have an effect, yet adherence is considered to be low. However, research into adherence tends to focus on quantitative analysis of performance, something which fails to perceive how people are adherent in their many different environments. As a contribution to gaining a deeper understanding, interviews were held with 30 individuals in UK, Egypt, Kazakhstan and 6 countries in sub-Saharan Africa to understand their perceptions on adherence for a range of drugs, and these were compared with an existing well-regarded list. New reasons for non-adherence were discovered, and a new viewpoint on adherence derived which considers adherence to be a single act and therefore as an individual opportunity to be adherent, permitting greater focus on the enablers and inhibitors of adherence at a point in time.
Keywords: 
Subject: Medicine and Pharmacology  -   Neuroscience and Neurology

1. Introduction

In his seminal 2003 report for the World Health Organisation (WHO), Sabaté [1] (p.xiii) said, “[Increasing adherence] may have a far greater impact on the health of the population than any improvement in specific medical treatments”. Adherence to instructions for medicine consumption is a fundamental requirement for health. Indeed, McColl-Kennedy et al. [2] refer to it as “Comply[ing] with basics”, yet non-adherence is a significant worldwide issue. For example, it has been estimated that 125,000 people die each year just in the USA as a result of non-adherence [3]; figures for other parts of the world are not known. In the developed world half of patients are not fully compliant with their prescription instructions [1,4,5], and it is thought that the proportion of non-adherence is higher in the developing world [1].
Much practical research has been done into the issue of adherence [1,5]. Peterson et al. [6] found 95 studies on adherence. More recently, a review of reviews [7] identified a total of 38 systematic literature reviews of adherence papers. A recent search of the MEDLINE database for the term “medicine adherence” indicates almost 19,000 such papers have been published. The field of adherence research is therefore continuing to expand.
Sabaté’s World Health Organisation report is a milestone in the field. Building on his work, another empirical report, “Adult Meducation: Improving Medication Adherence in Older Adults”, produced jointly by the American Society on Aging and the American Society of Consultant Pharmacists Foundation [8] categorised 55 causes of non-adherence using the five “dimensions” of Sabaté’s report: health system/HCT, social/economic, therapy-related, patient-related and condition-related factors, see Table 1.
However, there are limitations with the practical research so far performed. Firstly, most research has had a primarily Western focus and may not be completely applicable in the developing world. Secondly, there has been a concentration on age-related issues in the USA and HIV/AIDS-related issues in sub-Saharan Africa. It is therefore likely that further important information on causes of non-adherence, including details which may be specific to particular medicines or be geographically localised, still remains to be captured.
This study investigates people’s experiences of adherence in their lived lives, with the aim of exploring reasons for non-adherence and identifying new causes not so far documented. A series of semi-structured interviews was arranged with people who were willing to talk about their past experience of taking medicines. They were located in various environments ranging from a comfortable urban environment in a developed country through to an impoverished rural environment in a developing country.
It was determined that reasons for non-adherence were remarkably consistent across both developing and developed worlds. Undocumented reasons for non-adherence were discovered. As a result of the learning, a new viewpoint on adherence is proposed.

2. Materials and Methods

Interviewees were selected using purposive sampling [9]. Initial interviews were performed with contacts in UK. Following that, interviews were arranged with contacts in a range of developing countries including Kenya, Tanzania, Kazakhstan and Nigeria. These were intended to explore situations in the developing world, primarily sub-Saharan Africa. A total of 30 interviews were performed over a period of just over 5 months from the end of December 2014 to early June 2015. The questions asked are listed in Table 2.
Each interview was recorded and transcribed. A combination of Nvivo and manual means was used to code the transcripts. The general approach of Systematic Combining [10,11] was used to revise the initial framework based on empirical findings. Codes were analysed and a taxonomy of non-adherence created. Further analysis was performed to compare the reasons for non-adherence discovered in interviews with the list of 55 reasons from the “Adult Meducation” report [8].

3. Results

3.1. Overview

30 interviews were held, face to face or by telephone. Interviews generally lasted for 25-30 minutes. 6 interviewees in UK represented the developed world. 24 interviewees represented the developing world, 22 of whom were in sub-Saharan Africa, 1 in Egypt and 1 in Kazakhstan. Table A1 and Table A2 in Appendix A summarise the interviewees.

3.2. Coding Categories

Table A3 and Table A4 in Appendix B show phrases extracted from interview transcripts and how they were coded, looking separately at the developing and developed worlds.
As examples of coding:
  • Interviewee EG01 said, “…pharmacies in every street… just down the road from our flat”, and this was counted as “Distance, Positive, Close”, while interviewee UG01 said, “It’s 30km to and from, to the pharmacy. $10 [£6.57] transport” which was considered to be “Distance, Negative, Far”
  • Interviewee NG01 said, “Sometimes I’ll take it according to the prescription but sometimes I stop when I feel better”, which was coded as “Stop, Negative, Better”, while interviewee KN03 said “They act like emergency for my family” which was coded “Stop, Negative, Keep”
  • Interviewee KN08 said, “This tablets are in large sizes and so swallowing becomes a problem”, coded as “Size, Negative, Big”.
In this way, all relevant interview statements were captured and coded. Table 3 shows the coding derived from the interviews. As can be seen, not all categories have positive as well as negative attributes, but the focus of the interviews was on non-adherence and so this is to be expected.
As part of this work, surprises were found regarding the overall approach to adherence on the part of some interviewees. For example, some stopped taking medicine when they felt better even if it was an antibiotic; many struggled with tablets being too big to swallow or possessing a bitter taste; one commented on how the pharmaceutical industry was making profits from medicines; several were afraid of rumoured side-effects. There was a wide spread of reasons for why adherence was not achieved.

3.3. Taxonomy

However, it proved possible to consolidate these reasons. Further analysis was performed to create a taxonomy of non-adherence categories, identifying five entities relating to non-adherence. Table 4 summarises this.
This taxonomy shows that motivation is just one cause of non-adherence, despite being the one which receives strong focus. In fact, there are more reasons for non-adherence relating to the medicine than there are to the patient, while the consumption context is critical to adherence. Summarising this, it can be seen that there are three factors at play in adherence: patient, medicine and context.

3.4. Reasons for Non-Adherence

As well as identifying these three factors, the reasons given for non-adherence were assessed against the list of 55 in the “Adult Meducation” report [8]. Ten causes in the report were not mentioned in the research. These were of the type where the interviewee would have to expose themselves to what may be considered an unacceptable degree or which needed to be inferred by the interviewer in a face-to-face situation. Examples are “Mental retardation” or “Alcohol or substance abuse”.
However, Table 5 shows the 19 reasons for non-adherence discovered in interviews which were not mentioned in the report [8]. While some of these might be obvious and anecdotally known, they have not been documented in formal research to date.
Similar causes of non-adherence were seen in both the developed and developing worlds. For example, a lack of food and water for taking tablets was referenced in both yet this was not mentioned in the list of 55 causes. This suggests that interviews are of significant importance both to understand non-adherence reasons in detail and also to expand the list of known reasons.

4. Discussion

It seems evident that the qualitative research results have indeed provided a rich view of adherence as part of people’s lived lives in a range of environments from extreme poverty to relative comfort, across both developed and developing worlds. The results have extended our understanding of the phenomenon of non-adherence and given insights into the range of causes beyond prior knowledge.

4.1. Broadening the Scope of Adherence Research

The categories derived from the interviews provide a valuable picture of the broad spectrum of factors which make up adherence in context. The taxonomy of entities leads to the conclusion that to understand adherence we must consider the three aspects of patient, medicine and context.
For example, it is clear that motivation is an important part of adherence, yet it is just one factor among very many. The focus on increasing motivation in much adherence intervention is potentially missing the wider perspective. Even simply considering patient agency and beliefs broadens the scope of intervention. Based on this research, considering agency as relevant to adherence would bring into view the topics of the length of a course, the imposition of the regimen on the patient’s routine, and the causes of stopping. Would it be possible to shorten the course or to reduce the number of doses per day? This would be an intervention on the product side which reduces the need for patient agency, so facilitating adherence.
Taking context and medicine into account could make an even more significant impact. Consumption context is a potential major area of investigation. This research identified seven categories of causes of non-adherence under the heading of context: people, utensils, reminder, water, food, storage and norms. Norms is a large area, raising questions of culture that then includes the effects of stigma on medicine consumption. But the issue of utensils, for example, could simply be addressed by providing a suitable spoon with the medicine.
The medicine itself is perhaps the area that could generate the largest potential improvement to adherence. Product affordance was a factor in 13 categories of non-adherence including taste, size and smell. These could be addressed relatively simply by manufacturers if they were to take the issues seriously. Others might be more challenging but taking them seriously as causes of non-adherence could pay dividends.

4.2. Non-Adherence Reasons

The “Adult Meducation” report [8] documented 55 causes of non-adherence. This research uncovered 19 further reasons. The reasons were seen in both developing and developed worlds, indicating that although root causes of non-adherence might be different in some cases their manifestations are the same, for example a lack of water.
Having said that, it is interesting that some reasons for non-adherence would not routinely be considered in the developed world, for example a dislike of supporting the pharmaceutical industry’s profits, or concern that a medicine is foreign.
Nevertheless, it makes sense to consider those causes which might be shared, because interventions might be globally valuable or make a particular contribution in poorer areas, such as keeping medicine for future use and for family need. This implies that price and availability are relevant, but also, in consideration of generally “feeling better”, a lack of understanding that some medicines must be consumed until the prescription is complete. As well as patient education, this implies the importance of providing clear instructions in a language that the patient understands and that is consistent in both written and verbal forms.
Taking a different perspective, it may be seen that some of the factors of non-adherence are interrelated and can actually be traded off against each other. For example, if the affordance of the medicine is perceived by the patient as being inadequate in itself to permit adherence to take place they may be able to call on other resources from context and agency to overcome such inadequacy. If the medicine is bitter then the patient may be able to use their agency to bring sugar into context to sweeten it. If it requires food to be eaten at the point of consumption and there is none available then support may be obtained from an alternative source. These simple examples demonstrate the potentially complex interactions between adherence factors.
Building on these thoughts, it has become clear from the research that some adherence factors are effectively “mirror images” of each other. For example, a patient’s context may not be contributing sufficient resources to permit adherence, but if the medicine’s affordance were to be enhanced then consumption might still be able to occur. Perhaps a patient’s context cannot provide food or water, but if these could be incorporated into the medicine in some way then the patient may still be able to be adherent. Similarly, the patient’s agency may be limited – perhaps not being able to open the bottle or to swallow large pills – but enhancements to the medicine might address such limitations.

4.3. Unit of Analysis of Adherence

One important facet of this research is the focus on adherence as an individual act rather than an average of all adherence events for a single patient or even a cohort of patients. This approach has highlighted reasons for non-adherence rather than just measured it.
Much research on intervention highlights the limited impact which interventions achieve. For example, when van Dulmen et al. [7] reviewed 38 systematic reviews, they discovered that that only 45% of interventions resulted in improved adherence, and only 33% in improved outcomes. Many papers discuss the need for, or evaluation of, multiple forms of intervention to improve adherence rates. This is discussed in two reviews of reviews [12,13]. Kardas et al. [13] suggested in their review that “multifaceted interventions may be the most effective answer”, but at the same time they found that many of the reviewed papers reported mixed or limited success (for example [14,15,16]). Without an understanding of adherence enablers and inhibitors in patients’ lived lives, it is not surprising that interventions have limited impact.

4.4. Intention and Reality

When adherence research incorporates a theoretical perspective, it tends to use expectancy-value models, usually the Theory of Planned Behaviour [17,18], for example [19,20]. The limitation of such theories is that they reach only as far as the intention to act. They hold an implicit assumption that intention leads directly to behaviour, overlooking the possibility that it is not always true. In fact, this research has demonstrated that motivation – the intention to act – is just one element of adherence and that there are many factors that can prevent it, including those relating to the medicine and operating within the consumption context. A new theory of medicine adherence is required which recognises this in order to make progress towards higher adherence levels.

5. Conclusions

5.1. The Triad of Adherence

It is normal in adherence research to consider dyads. There is the dyad of prescriber and patient, for example. But this research has brought out the importance of considering the whole picture of the triad of the patient and medicine in consumption context. Looking at all three aspects allows the full picture of adherence to be seen. Understanding the three aspects and how they interact with each other as a system provides insights into reasons for non-adherence that cannot otherwise be discerned. This approach has uncovered new reasons for non-adherence.

5.2. Reasons for Non-Adherence

19 new reasons for non-adherence were documented as a result of this qualitative research. At a time when much adherence research is quantitative, assessing adherence by percentage compliance with instructions, it is important to understand that people have multiple reasons for their non-adherence which cannot be captured quantitatively. If we are to help people to become more adherent, we need to understand their circumstances. Putting all non-adherence down to a lack of motivation misses the point that this is just one of many facets. A deeper understanding of people’s lived lives can identify interventions which might make a difference to compliance.
It was found that reasons for non-adherence were remarkably consistent across the developing and developed worlds. Though caused differently, the outcomes were the same. For example, a lack of water at the time of consumption was identified in both sub-Saharan Africa and UK as a cause of non-adherence.

5.3. Adherence as a Point-in-Time Opportunity

Considering all this, it can be seen that adherence is not a percentage figure but is achieved or otherwise at each time consumption is due. It is either 100% or 0%. Understanding the point-in-time reasons for non-adherence will permit actions to be taken which increase the number of times when adherence is achieved, so enhancing the effectiveness of interventions.
For example, sometimes water is not available and adherence cannot be achieved. Reformulating the medicine so that water is not a corequisite will address this cause of non-adherence. It may only be effective 1 time in 10 but for that time it makes a 100% difference in adherence. Viewing adherence as a percentage of all consumption opportunities may overlook this point.

5.4. Learning for the Pharmaceutical Industry

Taking the above forward, it suggests that medicine formulations might be more intelligently designed, and that this might be of worldwide benefit. A lack of water to consume a tablet in Kenya might be due to there being no water in the well, but a lack of water in UK could be that the patient is a passenger in a car. Whatever the cause, non-adherence is the result. What can be done to remove the requirement for water from the consumption context? Can the medicine be provided in another formulation, perhaps? Can water be provided with the medicine? The first question relates to the manufacturer, while the second could be answered at the pharmacy. They could be long-term and short-term answers, or could depend on the medicine.
Considering some of the other reasons for non-adherence, we might bring the same thinking to the subject:
Lack of food: Can food be provided with the medicine? Can the active ingredients be incorporated within some form of food?
Bad taste: Can the medicine be sweetened in some way? Can the taste be masked?
Large size: Can the tablet size be reduced? Can the formulation be changed?
Bad smell: Can the formulation be changed? Can the smell be masked?
Considering the other categories identified, it seems reasonable to explore what the pharmaceutical industry can do to address medicine affordances in all the identified areas of content, branding, effects, taste, formulation, size, smell, instructions, regimen, distance, access, cost and diagnosis. It may also be able to contribute to some of the contextual categories of people, utensils, reminder, water, food, storage and norms. In particular, medicines which more completely address contextual challenges could be more successful in raising adherence than those which at present might be perceived as “one size fits all” or even “lowest common denominator”. Some factors will prove to be out of manufacturers’ scope and perhaps more related to healthcare providers and pharmacies, but others might be easily tackled once they become the subject of some analysis.
Patient centricity is a goal for many in the industry and taking this approach could enhance that focus. Exploiting the insights gained from in-depth qualitative research could deliver new ways of supporting patients to be adherent, moving towards the goals of increased adherence and higher quality of life.

5.5. Research Limitation

The research was performed remotely. A more ethnographic approach might have both confirmed the remaining 10 causes of non-adherence present in the “Adult Meducation” report [8] that were not found in the research, and potentially uncovered additional causes through observation and interviews with family members, medical staff, etc.

5.6. Opportunities for Further Research

It would potentially be useful to perform further qualitative research face to face with interviewees in their contexts. This should reveal greater depth of insight and add further understanding of non-adherence in sub-Saharan Africa to that which has been gained in this research.
The same approach could be taken to explore adherence to products other than medicine. For example, a fitness regime or a stop-smoking course also require adherence. Considering adherence as a point-in-time opportunity would allow research to study the triad of the patient and the “product” in context to understand non-adherence in more detail.
Theoretical work on the development of a theory of adherence could pay dividends in increasing adherence. It would start from the position of recognising the complex dynamics operating between the elements of the triad of adherence, and go beyond the focus on motivation to consider the holistic picture. Viewing adherence as a (complex) process where patient agency and medicine affordances come together into a consumption context would permit a deeper understanding of the interactions of the non-adherence categories in enabling or preventing adherence. Ideas for this can be found in [21].

Funding

This research was funded by the UK EPSRC as part of its funding of PhD students.

Institutional Review Board Statement

The study was conducted in accordance with the Declaration of Helsinki, and approved by the Biomedical and Scientific Research Ethics Sub-Committee of the University of Warwick Medical School on 26th January 2016.

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Conflicts of Interest

The author declares no conflicts of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

Appendix A. List and Summary of Interviewees

Local costs were converted to UK pounds in December 2015.
Table A1. Interviewee details.
Table A1. Interviewee details.
Ref. Sex Age Country Medicine Cost Location Distance
EG01 F 20-40 Egypt Cough medicine City Close
KN01 M 20-40 Kenya Antibiotics £0.03 Village
KN03 M 40-60 Kenya Amoxycilin Village 1km
KN04 M 20-40 Kenya Malaria tablets £3.23 Village 5km/£2.59
KN05 M 60+ Kenya Coartem £0.13 City Close
KN06 F 20-40 Kenya Malaria tablets Town Close
KN07 M 20-40 Kenya Pain killer, curatives £0.66 Village Close
KN08 M 40-60 Kenya Malaria (AL) £0.97 Village 2km
KN09 M 20-40 Kenya Panadol £0.84 Village 2km
KN10 M 40-60 Kenya Chrotin B £1.29 Village 6km
KN11 F 20-40 Kenya Quinine £2.91 Village 2km
KN12 F 20-40 Kenya Flugone £1.29 Village 3km/£1.94
KN13 M 40-60 Kenya Cold Cups £0.32 Village 1km
KN15 M 20-40 Kenya Ibuprofen £1.62 Village 2km
KS01 F 20-40 Kazakhstan Repronact £2.09 Village 3.5km
NG01 M 40-60 Nigeria Artesunate £1.49 Town Close
TZ01 M 40-60 Tanzania Coartem Village 4 hours
TZ02 M 60+ Tanzania Paladrin £1.53 Town Close
TZ03 M 60+ Tanzania for Stomach Abscess £0.31 Town Close
TZ04 F 40-60 Tanzania Malafin, Panadol, Maleratab £1.53 Town 10-15 mins
UG01 M 40-60 Uganda Quinine £3.95 Village 30km/£6.59
UK01 F <20 UK Roacutane, Erythromycin Free Village 5km
UK02 M 40-60 UK multiple Free Town 1km
UK03 F >60 UK Metformin Free Town 1km
UK04 M >60 UK Antibiotics £8.20 City 5km
UK05 M >60 UK for Angina Free Town 2km
UK06 F >60 UK Sulfasalazine,Methotrexate Free Town 2km
ZI01 F 20-40 Zimbabwe Amoxycilin Village
ZM01 M 40-60 Zambia Coartem Free Village Close
Table A2. Interviewee summary.
Table A2. Interviewee summary.
Category Value Number of interviewees
Sex Male
Female
11
19
Age range <20
20-40
40-60
>60
1
12
10
7
World - developing Total
Of which:
  • Egypt
  • Kenya
  • Kazakhstan
  • Nigeria
  • Tanzania
  • Uganda
  • Zambia
  • Zimbabwe
24

1
14
1
1
4
1
1
1
World – developed UK 6
Type of location City
Town
Village
3
9
18
Medicine Antibiotics
Cough medicine
Malaria medicine
Painkillers
Other
5
2
11
4
8
Medicine cost Free
<£1
£1-£2
£2-£3
>£3
Unstated
6
8
6
2
3
5
Distance to obtain <1km
1-2km
3-4km
5-6km
>7km
Unstated
8
11
3
4
2
2

Appendix B. Interview Coding

Table B1 lists coding with sample interview content and reference for the developing world. Table B2 lists the same for the developed world.
Table A3. Interview coding, developing world.
Table A3. Interview coding, developing world.
Transcription code Interview example Ref.
Distance, positive, close …pharmacies in every street… just down the road from our flat
But if I need to get it from a pharmacy it’s a km
I walk, I take one minute to get to the health centre
Not very far. Just walk to get them
It was 2km away
2km from my home
2km from my home
2km from home
About 1km
Pharmacy isn’t far, about 10-minute walk from my house
Just nearby. Two minutes
Just a few meters… two minutes’ walk
Not too far
Only 10 minutes’ walk to the [small] pharmacy…
when you want to go to the big pharmacy it takes about 15 minutes
EG01
KN03
KN05
KN06
KN08
KN09
KN11
KN15
KN14
KZ01
NG01
TZ02
TZ03
TZ04
Instructions, negative, foreign language, verbal I don’t understand colloquial Arabic EG01
Instructions, negative, foreign language, written I think we figured out the written instructions
…you really don’t understand the reading
…people who can’t even read
EG01
EG01
EG01
Utensils, negative, missing I don’t think there was a spoon. I think we had to buy it separately EG01
People, positive, present Probably my husband was there sometimes
Mum and my younger sisters were there
It’s better for someone to make sure you get the full dose
Mother and brothers were there
Grandmother was there with me as I have no parents
I was with the physician only
Family members
With a friend
My parents
My wife is the one who was always reminding me to take it
EG01
KN04
KN06
KN09
KN11
KN13
KN14
KN15
KZ01
TZ03
Content, negative, unknown …you really don’t have a clue what’s in it... [it’s] at the back of your head that it could be anything
I don’t like taking medicine…because of the idea that it’s chemicals… natural ones are better than synthetic
EG01

NG01
Branding, positive, known I suppose the branding just makes you trust it more EG01
Motivation, negative, last resort I think I sort of used it as a last resort
Just like when I’m really sick, I’m like distressed for getting better… makes me take the pills
Urge to get healed
I was physically weak and mentally disturbed… I felt desperate
Totally disturbed… Eager to know its [effect]
Felt hard to use since I don’t like medicines
I’d have taken anything
EG01
KN03

KN07
KN08
KN10
KN15
KZ01
Diagnosis, negative, foreign language, verbal …would have helped if the person that we saw could speak English EG01
Taste, negative, bad Sometimes obviously the taste of the medicine
…the taste of the drugs
I don’t like it. I don’t like taking medicine because of the taste
They don’t taste well when you swallow them. Bad taste
[not completing the full dosage] is primarily caused by… difficulty in taking the medicine due to… taste…
I took one but couldn’t take more because of the nasty taste
EG01
KN03
NG01
TZ03
ZI01

ZM01
Effects, negative, bad …it’s not good for you…
Sometimes it can harm the body
…if I take the medicine it weakens my body for some time
…in fact the body constitution was changed…
The medicine itself was reactive…
…the Coartem seems to be a bit too much for me
I hear about these doctors saying about how conventional medicines affect the liver
EG01
KN10
KN15
TZ02
TZ02
ZM01
ZM01
Effects, negative, side, general …there’s all these side effects…
I don’t like taking medicine because… there’s side effects
…taking tablets irritates them
EG01
NG01
TZ01
Beliefs, negative, others, too dependent …“Paracetamol doesn’t work for you because you keep taking it”
…so I’ll have to bargain for half a tablet of Paracetamol if my temperature is high as a kid, they didn’t believe in medicine much
EG01
KZ01
Beliefs, negative, profit, pharma …this thing about the pharmaceutical industry and how they’re making profit EG01
Beliefs, negative, profit, herbal …the natural remedy people are also making their profit as well EG01
Stop, negative, better I wouldn’t even [complete the course] if the GP said “make sure you finish the course”
…after 3 days you feel like you’re ok. You’re like, “No I don’t need to get more medicines then”
Many people [stop when they feel better]
Sometimes I’ll take it according to the prescription but sometimes I stop when I feel better
Sometimes I feel that I’m feeling better
When they see they’re a little better they stop taking the tabs
…then I got well… feeling well before finishing the dose
When one takes the medicine and gets better maybe he feels fine, so it’s difficult for him to finish the dose
And some, when they feel better, then drop the medicine
[not completing the full dosage] is primarily caused by early signs of healing…
For some, I think the moment they feel better they choose not to take any more
EG01

KN03

KN06
NG01

TZ01
TZ01
TZ03
TZ04

TZ04
ZI01

ZM01
Cost, positive, low At the hospital sometimes we don’t pay
About 100 Tz Shillings [£0.03, $0.05]
Ksh20 [£0.13, $0.20]
Ksh70 [£0.47, $0.72]
Ksh50 [£0.33, $0.52]
Tsh1000 [£0.30, $0.46]
We go to the hospitals. They give out malaria tablets for free
For things like Coartem… they don’t really charge
KN03
KN01
KN05
KN12
KN14
TZ03
TZ04
ZM01
Reminder, positive, alarm I use an alarm for night
Some medicines I have to put alarm on reminding myself not to forget this
KN01
KZ01
Taste, negative, bitter It’s… bitter
I think there should be much… reduce the bitterness
Some medicines are bitter this makes it hard to consume
too… bitter
Bitterness of the medicine… it is so bitter
I hate medicine. They are bitter
Reduce the bitterness… of the tabs
It becomes easier to take if medicine is tasty…
[Make them] a bit sweet
Better something that is sweet
Some are very, very… some are not sweet, you know. They’re so sour. I think if maybe sweeter, then somebody can swallow it easier
And some, because the medicine is soooo bitter, drop it from taking the whole dose
KN01
KN01
KN07
KN09
KN11
KN12
KN04
KN07
KN09
NG01
TZ04

TZ04
Size, negative, big It’s big…
One is like the size of the pill
This tablets are in large sizes and so swallowing becomes a problem
The size is too big
Size of this medicine is so big
…at least the size of it should be moderate to make easier swallowing
Reduce… the largeness of the tabs
A bit… small[er]
[not completing the full dosage] is primarily caused by… difficulty in taking the medicine due to… size…
…you swallow them and it feels like you haven’t swallowed them and you wonder how you’re going to take the next tablets…
KN01
KN03
KN08
KN09
KN11
KN01

KN04
KN09
ZI01


ZM01
Formulation, negative, injection I fear injections!
I prefer medicines than the injection
I prefer oral
KN01
KN03
KN07
Effects, negative, side, specific I’ve read about side effects like your digestive system…
Some people develop boils, others get sick, get weak, sweat a lot
…now vomit…
…I feel like vomiting
…I could feel dizziness in me
…they take medicines and end up vomiting
…you become very tired
It makes me feel so dizzy, a lot of noise in the ears, chilling of the body, loss of appetite, sometimes vomiting. This makes [me] feel bad, dodge the dosage
…even produce a smell when urinating or on the skin or in sweat…
Sick for a whole week and all that, the headaches, stomach stuff, the pains. I thought not to go through all that [by consuming the medicine]
EG01
KN01
KN03
KN06
TZ02
TZ02
TZ04
UG01


ZI01
ZM01
Taste, positive, sweet The ones we have around here are very sugary so very easy for someone to take
I liked it
KN03

KN14
Distance, negative, far If I need to get from the hospital I have to go 4km away
5km from home. Travelled by Nissan at a cost of ksh400 [$3.95, £3]
…good pharmacy shops are not available in the rural areas
Almost 6km
4km from home
3km from home. Used a motorbike which costed ksh200 [£1.33, $2.06]
The problem is the pharmacy doesn’t open on Monday so we had to drive to her home about 3.5km away
4 hours [travel time]
It’s 30km to and from, to the pharmacy. $10 [£6.57] transport
KN03
KN04
KN07
KN10
KN12
KN13

KZ01

TZ01
UG01
Beliefs, negative, others, stigma …when I’m there I’m not feeling comfortable to take the pills… so stigma itself can cause or make someone not to take the medicines… stigma is a major issue
I sometimes I never just wanted to take medicine, because that I feared for stigma… sometimes when I wanted to take that medicine I could just hide
People are afraid of that stigma… when people have HIV and AIDS they always try to hide it from people
KN03


TZ02


TZ02

Food, positive, present

Use of porridge
Porridge
I had eaten
My mum was cooking
Yes [I have food]. Normally you have to eat for medicine
I do take it with… porridge

KN11
KN12
KN15
KZ01
NG01
TZ04
Food, negative, absent If you don’t have something to eat you won’t take the drug… you have nothing to eat
…take them after every meal. This was not possible due to poorness. We cannot afford 3 meals a day so it was hard to take the tabs in the afternoon…
I did not take it at that time because I was hungry and tired
No [I did not consume] I was hungry
I wasn’t getting enough food… I really felt that drug if I hadn’t eaten
It’s difficult to have enough food to visit the prescription
We Africans take some medicines with not enough food
They require a lot of drinks and eating well but we are poor we can’t afford most of the requirements. Sometimes we have a single meal a day
KN03

KN04


KN04
KN11
KZ01
TZ01
TZ01
UG01
Beliefs, negative, foreign origin I don’t like taking medicine because… it’s foreign NG01
Beliefs, negative, lack of faith …if you don’t have that [faith to be healed] then you’ll have to take medicine TZ02
Course, negative, long …sometimes prescriptions take long time, many days for you to finish the dose
I wished I could consume them once and over… I thought I would be given medicine to consume once and over… In general medicines are difficult for me to take. The dosage may be long
It becomes easier to take medicine… does not taking too long
To get relieved at once
Others they are not following the information [from the doctor]
They take long to heal, it’s a long dosage of 3-6 days
KN03

KN04


KN07
KN09
TZ04
UG01
Stop, negative, replaced by other …maybe going for other drugs to see if they treat quicker… I end up not taking the other dose… KN03
Stop, negative, keep They act like emergency for my family
I keep it just in case I get a re-occurrence of same symptom. Then I take the leftover when I cannot get to buy another
Here in Africa, many people… keeping a dose…
KN03
NG01

TZ01
Motivation, positive, stay well I don’t want to feel sick again tomorrow so I must complete the medicine
If maybe I could default then I could have been maybe in danger
In general I think it’s good for taking all malaria tabs because if you don’t… then you can feel worse when malaria attacks again
KN06

TZ02

TZ04
Motivation, positive, get well Hopes came with the medicine… I used my illnesses as a reason to take it right away
I knew soon I will be well
KN13

KN14
Effects, positive, others Also, experience from other people. If maybe my [family] used the same drug and she got well, definitely that helps me to finish… KN03
Regimen, negative, unacceptable You realise it’s hard for me to wake up in the midnight to take pills
Personally I go for prescription guidelines [as cause of failure]. They easily make me not to finish the prescription
And with the tablets, they feel like there’s too many
KN03
KN03

ZM01
Cost, negative, high Ksh500 [$4.95, $3.75] was the cost of the medicine
Ksh150 [£1, $1.53]
Ksh130 [£0.87, $1.33]
Ksh200 [£1.34, $2.05]
Ksh450 [£3.01, $4.60]
Ksh300 [£2, $3.09] to buy the medicine
Ksh250 [£1.67, $2.57]
Fairly expensive for Kazakhstan…about £3-4… they tend to look at how you’re dressed
450 Nira [£1.49, $2.27]
…malaria medicine is not affordable to a lot of people…
Tsh2000, 5000 [£0.58, $0.91; £1.46, $2.27] depending on the quantity
… but mainly in hospitals there are less malaria tabs so most people go to buy them in the pharmacy… there are some tablets from India, there are some tabs from Western countries and then there are some tablets from the local, from within the country. So within the country you can find them at tsh1000 [£0.29, $0.45]. And then tabs from outside the country goes to tsh3000 [£0.88, $1.36] to tsh5000 [£1.47, $2.27]
…some cannot afford the full dose
$6 [£3.94] medicine
KN04
KN08
KN09
KN10
KN11
KN13
KN15
KZ01

NG01
NG01
TZ02
TZ04





TZ04
UG01
Instructions, negative, misunderstood I know how to take Coartem… we take two tabs, two times a day KN05
Instructions, positive, clear, verbal They explained it clearly how to take it
I knew… by listening
My teacher told me to follow the doctor’s prescription
…the doctor showed me the correct way
I just listened to a doctor so that I can follow what he has told me
I followed the instruction given to me by the doctor
I realised its importance… after being taught the effects of that medics when taken wrongly
KN05
KN07
KN11
KN14
TZ01
TZ03
UG01
Course, positive, acceptable I take it up to the last one
I take it until I use all the tablets
I do follow the information
KN05
NG01
TZ04
Effects, negative, others I just see them, they want to go vomit KN06
Stop, negative, discarded They throw it away, because you can’t go on taking the medicine KN06
Access, negative, hard …with curative I found after going to various pharmacy shops
I did not obtain the medicine [until]… the third shop
KN07
KN08
Formulation, positive, liquid Personally I would go for liquid
People around here with children they like syrups
If they can convert this tabs into syrup… the better
KN03
KN07
KN08
Regimen, negative, unexpected I could not actually imagine there will be a prescription or directive on how to take the medicine… I thought I could just… consume regardless…
I thought I will get better at that moment
I get a medicine to drink once and get cured
I had planned to take large amounts
It was not in my plan to consumer it according to the prescriptions…
KN08


KN11
KN13
KN14
UG01
Water, negative, absent The medicine was to be consumed… with a lot of water which I did not have sufficient of… I lacked water… I was thinking of taking the medicine without water KN08
People, negative, absent There was no body… No [I did not consume]
On my own… No, I stopped
[not completing the full dosage] is primarily caused by… difficulty in taking the medicine due to… lack of monitoring of the sick by fit family members
KN08
TZ04
ZI01
Smell, negative, bad This medicine has a smell and this smell surely disturbs me a lot when taking the medicine
Some medicines do emit a pungent smell that will cause nausea and vomiting… [Is the smell sufficient to stop taking?] Yes bro absolutely! As soon as you open the package you actually feel the strong smell
KN08

ZI01
Beliefs, positive, confidence I had confidence that it will relieve my pain KN09
Water, positive, present Water helped me to consume
Water… helped
Water
…with a lot of water. Yes, I have enough water
I do take it with tea…
Yes, yes. I have access
Yes, my eldest sister, they take their medicine with Coca-Cola
KN09
KN11
KN12
TZ03
TZ04
ZM01
ZM01
Formulation, positive, injection [Easier] through syringe
I prefer the injection before because I don’t like the taste of medicine
…in the east region [of Africa] there are some people… the majority… who prefer injections…
The other [sister], they prefer the injections to tablets
KN09
NG01
TZ02

ZM01
Beliefs, positive, others I had been informed about its advantages KN10
Instructions, negative, unclear, written So even though the packaging said something else, the doctor specified “something something 3 times”. I had to ask my parents to decode the curvier writing. [without that] it would have been a bit of a guess KZ01
Regimen, positive, acceptable I didn’t mind for instance at night-time to wake up KZ01
Regimen, negative, complex [Prefer] once per day
[Prefer to] take many dosage for a quick recovery
I would like to take it whenever I go to bed
I had to make sure that they eat in the morning… the first two tablets of the day were regular and then not
When I go to the clinic, I just get the diagnosis and I go for other medications… there were too many tablets. So I took my pawpaws and I was ok in 2 days. The malaria was all gone
KN12
KN14
KN15

KZ01

ZM01
Regimen, negative, forgot And then once I forgot, I misplaced it, so I missed it
The time I forgot to take it. I repeated the dose that I did not take
KZ01
TZ03
Instructions, negative, unclear, verbal So it was a very vague direction so I didn’t assume that it was critical KZ01
Routine, negative, absent …if your day gets mixed up with night and you’re really not sure any more what to stick to
That occurs so much in Africa! Maybe you can miss in that case in the evening, or forget in the morning and then take in the afternoon then miss in the evening, or someone can take 6 at once!
…some people I know only take them in the night
KZ01

TZ04


TZ04
Routine, positive, present I tend to be pedantic about those things… I’ve been given a task… I’m going to do this… I might as well do it properly
I try as much as possible to get it at home. After my meal, my breakfast, and when I return from work
I make sure that I am in the house
I just started following the prescription strictly… I was at home
I remember if I want to eat I have to take medicine
[Are you always at home?] Yes, it is
KZ01

NG01

TZ01
TZ02
TZ03
TZ04
Cost, negative, herbal, low …the herbal [malaria medicines] are very cheap
…medicines from China… food supplement… cheaper
Or if you don’t have money you just can take some local medicine
NG01
NG01
TZ04
Beliefs, negative, value Sometimes they say that the tablets are weak TZ01
Stop, negative, busy I was occupied maybe from work
Because maybe they’re occupied
TZ03
TZ03
Storage, negative, unsafe …maybe the people being lazy can just put them where children are reaching and then the children can consume them… it can be more dangerous TZ04
Stop, negative, run out …some cannot afford the full dose TZ04
Table A4. Interview coding, developed world.
Table A4. Interview coding, developed world.
Transcription code Interview example Ref.
Distance, positive, close Walk…
We don’t live too far away, about half a mile
10 yards. The doctor’s and the chemist’s are together
About a quarter of a mile
About a mile
UK02
UK03
UK04
UK05
UK06
People, positive, present [What made applying it possible?] Someone else did it
Obviously have breakfast together and dinner…
…with the family
I took the responsibility on so she didn’t have to think about it
Yes. “Have you taken your tablets?”
UK01
UK02
UK04
UK04
UK05
Content, negative, unknown I wouldn’t want to be putting a lot of stuff into my body that I didn’t know what it was doing UK06
Motivation, negative, last resort I never want to take drugs… only because he said to take them I took them
I was sad that I was prescribed it for the illness I was said to have, but I took it
UK04

UK05
Stop, negative, better I don’t take the prescribed dose every day… I can go a fortnight without taking them… when I haven’t got the symptoms I’ll knock them…
I’ll take them for several days until I notice it’s subsided and then I’ll stop
UK05

UK05
Cost, positive, low [They’re all free?] Yes
[It didn’t cost you anything?] No
Fortunately [wife] had an exemption…
Free
[You don’t have to pay?] No
UK01
UK03
UK04
UK05
UK06
Instructions, positive, clear, written [Easy to understand?] Yes
It was written on the doctor’s prescription. And a copy on the packet
I think the label on the tablet bottle said that
…it has a little leaflet inside
Because it was on the box that the tablets came in
UK01
UK03
UK04
UK05
UK06
Size, negative, big The Sulfasalazine are quite large and hard but no, no problem… just the size, but as long as my tea is not too hot UK06
Food, negative, absent Sometimes when I remembered there wasn’t another chance to eat UK01
Stop, negative, keep I don’t feel any ill effects by not taking them… I’ve got those in stock that I can draw on if I need UK05
Motivation, positive, stay well I don’t want to have any problem coming up because I’ve forgotten to take them or decided not to take the medicine he’s prescribed. That would be foolish
And from starting to take those tablets I have had no swelling and no pain. I still take them
I was extremely grateful that there was something I was being given to keep down the… pain, and it did
I don’t want to risk a return to the swelling and pain… I would not risk stopping taking them
UK02


UK06

UK06

UK06
Motivation, positive, get well [Positive results encouraged you to carry on?] Yes
I was happy because it would take away a lot of the pain
The results were absolutely magical, marvellous, a miracle
UK03
UK04
UK06
Regimen, negative, unacceptable I didn’t put it on my back very often because it was hard to get to… I had to clean it before, so that was annoying as well UK01
Cost, negative, high Yes, £7 or whatever UK04
Instructions, negative, misunderstood It said take 2 twice a day but I didn’t know what that meant UK01
Instructions, positive, clear, verbal I think he must have said “take one per day”, which I did every morning
I was told how to take them
UK03

UK05
Course, positive, acceptable [Take in accordance with the prescription?] Yes UK01
Water, negative, absent Sometimes. Not always UK01
People, negative, absent [And when you didn’t apply it you were on your own?] Yes UK01
Water, positive, present […take them all with water?] Yes
I took it with a drink
…with a cup of tea
Water
..with a cup of tea
UK02
UK03
UK04
UK05
UK06
Regimen, positive, acceptable …breakfast time is set and teatime is set so twice a day fits in quite happily with that
I didn’t need to take one 3 times a day. I could take the 3 at breakfast time
UK04

UK06
Regimen, negative, complex I had to take it with food 8 hours apart, an hour before I ate…I had to take it during the gap between my lessons before lunch but that’s actually 50 minutes… and then on the bus as soon as I got on, for tea… there were a lot of times I actually forgot
[If you had a choice of how to take...?] I’d say not with food
Especially the hour before food, you don’t know when you’re next going to have food
…it was a real concoction of working out what she needed at each time so I devised a spreadsheet
It was something that sounds simple but was such an onerous task day after day
You might have run out of 50s but you’ve got 25s so you give three 25s or combinations of… it was an absolute logistical nightmare
UK01



UK01
UK01


UK04

UK04

UK04
Regimen, negative, forgot Perhaps very very occasionally if we’ve been out to a late dinner… I might have forgotten
Well very rarely
UK02

UK03
Instructions, negative, unclear, verbal …and the pharmacist might have grunted that at me as he passed it over
Initially, yes, but everything was so fluid… that it became evident that it didn’t really matter too much
UK04

UK04
Routine, negative, absent …change in routine, like on a weekend… or I was staying in someone’s house, I’d forget to take it
…but if we ate upstairs or in a different room I wouldn’t take it
UK01

UK01
Routine, positive, present …one in the morning and one at night. Getting up and going to bed. Part of the routine…
Just sort of when getting up or going to bed it jogged my memory
I put it in the dining room because I had to take it with a meal
I take certain ones with a drink with my breakfast or before my breakfast, and I have some… in the evening also before I take a drink
I fill the containers… for 7 days… [then] I don’t forget them… I’m capable of remembering what should be in each
I always took the packet out and took it with my breakfast
So it was quite easy as long as I’d got them with me
In the morning with breakfast with a cup of tea… evening meal again with a cup of tea
In a morning [At breakfast?] Yes
[Do you have them in a box with flaps?] Yes. [Does that help?] Very much so
I got a little box with a week of separated compartments… I don’t have to think about it in a morning
At the breakfast table
UK01

UK01
UK01
UK02

UK02

UK03
UK03
UK04

UK05
UK05

UK06

UK06
Stop, negative, run out We had to eke them out instead of having like 2 tablets twice a day we had to have 1… UK04
Access, positive, easy Mum picked it up
Walk, or perhaps drive in if I’m going to town… it’s a standing order… it’s very simple
Collected from Boots… they have an arrangement by which you collect regular medicines
[It wasn’t inconvenient?] No
We just go and pick it up from the chemist
It could be delivered to me but I’m usually out… so I call
UK01
UK02

UK03

UK03
UK05
UK06
Motivation, negative, tired [When you didn’t apply it, you were…?] Tired UK01
Beliefs, negative, pointless There didn’t seem to be a lot of point [in consuming]…
I don’t know really what I’m taking tablets for… I doubt his diagnosis actually… If I’ve no pain then I don’t need it preventing
UK01
UK05
Reminder, positive, general Some kind of reminder, especially when I’m staying over UK01
Instructions, positive, compliant I have been advised by my doctor to take these… and therefore I’m quite happy to take whatever he has prescribed…
I just do as I’m asked to do
UK02

UK06
Formulation, positive, tablet No it was very simple as it is, in foil
In my case, no. They’re just tablets
[wife] was always very good at swallowing tablets
I find tablets pretty easy
[What you’ve got is fine?] Yes
UK03
UK04
UK04
UK05
UK06
Size, positive, small [Any problems?] No. [Small enough?] Swallow them down UK05
Effects, positive, side, none [Any side effects?] Not to my knowledge UK06

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Table 1. The 55 causes reported to affect adherence [8].
Table 1. The 55 causes reported to affect adherence [8].
Preprints 100919 i001
Table 2. Semi-structured interview questions.
Table 2. Semi-structured interview questions.
Number Question
1 What medicine do you wish to share your experiences of?
2 Is this your first time with this medicine or is it a repeat prescription?
3 How far was it to a pharmacy?
4 How much did it cost you to buy the medicine?
5 Did you obtain the medicine?
6 If you obtained the medicine, how did you feel about it at the time?
7 Did you actually plan to consume it in line with the prescription?
8 Did you know how to take this medicine? How do you know?
9 Please describe your physical surroundings on various occasions when the prescription said you should consume? Who and what was there and not there?
10 What were you thinking and feeling?
11 How were your physical and mental health?
12 Did you actually consume at that time?
13 What helped you to consume or prevented you from consuming?
14 Is there anything about the medicine that makes it hard for you to take it? What would make it easier for you?
15 If you had the choice, how would you like to take this medicine?
16 Anything else you want to say about what makes it easy or difficult to take medicines for you personally?
Table 3. Coding of interviews grouped by category.
Table 3. Coding of interviews grouped by category.
Category Positive attributes Negative attributes
Distance Close Far
Access Easy Hard
Cost Low High
Herbal, low
Diagnosis Foreign language, verbal
Instructions

Clear, verbal
Clear, written
Foreign language, verbal
Foreign language, written
Unclear, verbal
Unclear, written
Misunderstood
Utensils Missing
People Present Absent
Content Unknown
Norms Others, stigma
Branding Known
Beliefs Others
Confidence
Others, too dependent
Lack of faith
Foreign origin
Profit, pharma
Profit, herbal
Value
Pointless
Motivation Last resort
Stay well
Get well



Tired


Stop


Keep
Replaced by other
Discarded
Better
Busy
Run out
Effects Others
Side, none
Others
Side, general
Side, specific
Bad
Taste
Sweet
Bad
Bitter
Formulation Tablet
Liquid
Injection


Injection
Regimen
Acceptable
Unexpected
Unacceptable
Complex
Forgot
Reminder General
Alarm
Water Present Absent
Food Present Absent
Size Small Big
Smell Bad
Course Acceptable
Long
Routine Present Absent
Storage Unsafe
Table 4. Taxonomy of categories of non-adherence.
Table 4. Taxonomy of categories of non-adherence.
Taxonomic entity Categories
Patient motivation Motivation
Patient agency Course, Routine, Stop
Patient beliefs Beliefs
Consumption context People, Utensils, Reminder, Water, Food, Storage, Norms
Product affordance Content, Branding, Effects, Taste, Formulation, Size, Smell, Instructions, Regimen, Distance, Access, Cost, Diagnosis
Table 5. Reasons for non-adherence beyond those documented in “Adult Meducation” [8].
Table 5. Reasons for non-adherence beyond those documented in “Adult Meducation” [8].
Reason Seen in interview
Concern with medicine content EG01
Verbal instructions in foreign language EG01
Written instructions in foreign language EG01
Pharmaceutical industry profits EG01
Herbal medicine industry profits EG01
Feeling better KN03 UK05 TZ01
Lack of food KN03 KN04 TZ01
Lack of water KN08 UK01
Concern that medicine is of foreign origin NG01
Lack of faith leading to need for medicine TZ02
One medicine being replaced by another KN03
Medicine kept for future occasions KN03 NG01 TZ01 UK05
Medicine kept for family need KN03 NG01 TZ01
Instructions misunderstood UK01 KN05
Difference between written and verbal instructions KZ01
Lack of routine UK01
Lack of safe storage TZ04
Forgetfulness KZ01 TZ03
Run out of medicine UK04
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