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Table 2 Patient reports of modifications to treatment regimens and understanding of illness and treatment

From: “It’s so hard taking pills when you don’t know what they’re for”: a qualitative study of patients’ medicine taking behaviours and conceptualisation of medicines in the context of rheumatoid arthritis

  Reported modifications to treatment regimen Understanding of treatment regimen (how drugs work and/or how to take them) and correlation with medical records Understanding of illness (es) (incl. disease progression, symptomatology) Adherence classification
P1 Self-medicates despite being told not to do so by the doctor; takes an OTC analgesic Poor understanding of how drugs work Limited understanding of illness.
Cartilage is being eaten away, causing joint pain. RA is caused by many years of performing household chores that involve use of water
Intentional non-adherer
P2 Does not use traditional medicines or CAM; self-medicates with previously prescribed pain medicines; increases insulin when sugar levels are too high Poor understanding of regimen; discrepancies in records versus patient description of drugs Cannot link her symptoms to her various chronic conditions
Hard work/chores cause RA
Intentional non-adherer
P3 Scared of mixing medicines Does not know what drugs are for, just takes them Limited understanding of illness
RA is caused by over-exposure to cold temperatures
Adherer
P4 Took ‘bone medicine’ acquired illegally from hospital; deliberately skips evening doses when not in pain Basic understanding of what drugs are for, does not understand how they work Limited understanding of illness
Fluid in the joints has run out, causing pain when cartilage gets worn out. No known cause of RA, you just get it
Intentional non-adherer
P5 Self-medicates with topical mustard and garlic oil; drinks lemon water with honey Did not include all drugs in description of regimen; does not understand how drugs work Limited understanding of illness
Red blood cells are fighting the white blood cells. RA might be genetic
Non-intentional non-adherer
P6 Sometimes feels like taking a break from medicines; scared to mix medicines Takes so many pills, she forgets the names; clear understanding of how to take drugs, which does not match records; good understanding of RA and DM drugs Understands RA and DM best, although vaguely; poor understanding of HT and Ch
Bones are being eaten away. RA caused by over-working yourself.
Intentional non-adherer
P7 Drinks ‘Forever Living’ (a tonic containing aloe vera extract) Poor understanding of HT drugs; knowledgeable about RA drugs Not concerned about HT; poor knowledge of HT, good knowledge of RA
Immune system is attacking the joints and causing inflammation; cartilage gets eaten away. RA might be hereditary but doctors are uncertain.
Intentional non-adherer
P8 Does not take chloroquine because it ruins her eyes; drinks ‘Lavida tea’ (an organic herbal tea) Unable to recall all drugs; not taking everything correctly; uncertain about how drugs work Limited understanding of illness
Nature of disease not explained. RA just happens; not related to hard work or chores.
Intentional non-adherer
P9 Does not self-medicate since proper diagnosis was made Not taking drugs as prescribed; taking drugs that were previously prescribed; does not know names of drugs; does not know what drugs are for Does not understand illness
The gel between the bones is finished causing pain when they rub together.
Cause is unknown, not chores related.
Intentional non-adherer
P10 Does not self-medicate Could not recall all drugs but seems to be taking them correctly; taking triple dosage in error for one drug; does not understand what drugs are for Limited understanding of illness
Exposure to water and cold causes RA
Non-intentional non-adherer
P11 Does not self-medicate or mix medicines due to possible side effects Good understanding of drugs Good understanding of illness
Immune system incorrectly identified something in the body as foreign and has mounted an attack. Cartilage between bones has been eaten away, causing pain. Cause unknown
Adherer
P12 Does not self-medicate because she’s afraid of side effects Describes drug regimen correctly, but does not know which drug is for which condition Less concerned about HT than RA
Cartilage has been eaten way causing pain. No cause
Adherer
P13 Initially self-medicated with NSAIDS; uses aloe (traditional medicine); stops taking medicines sometimes, just to see how her body will feel Could not recall all drugs but seems to know how to take them correctly Limited understanding of illness
Bones and joints swell and cause pain. Cause is still unknown
Non-intentional non-adherer
P14 Understands importance of calcium but does not take it due to taste and side effects; self-medicates with joint support pills and pain killers obtained illegally from pharmacy Understands drugs for each condition; mostly clear on how to take drugs and how they work Limited understanding of illness
RA caused by hard work and exposure to cold. Hereditary
Intentional non-adherer
P15 Overdoses on medicines to help her sleep; sometimes skips HT medicine; self-medicates with ‘phila’ (traditional remedy) for DM Could not remember all drugs; some understanding of what they are for; lack of understanding leads to overdosing Does not fully understand all her conditions
Bones being eaten away by excess acid. RA caused by the cold
Non-intentional non-adherer
P16 If she misses a weekly dose, she waits until the next week as she was told not to switch days Some misconceptions about why she takes certain drugs; recognises drug names and knows how to take them Limited understanding of illness
Bones are rubbing up against each other which causes pain because cartilage is worn out. No real cause; could be a curse
Adherer
P17 Does not self-medicate Seems clear on how to take drugs and what they are for Limited understanding of illness
Fluid between the bones in finished, causing friction between the bones. No cause
Adherer
P18 Was taking OTC medications until they could no longer control pain Understands how to take drugs and has some understanding of what they are for Limited understanding of illness
The joints are being attacked which depletes the gel between them. Causes friction and pain. Might be a result of smoking but the cause is not known
Adherer
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