Participants offered rich in-depth narratives of their experiences with medication, particularly in regards to side-effects. In general, there was a clear knowledge about the names, dosages and uses of their medications including those for other medical conditions. Medication was an important aspect of the participants' lives and they took advantage of the focus groups to share their experiences and reflect upon these in an open way. They showed interest in the medication of other participants and used the group to normalise their own experiences. Participants had both positive and negative conflicting attitudes towards their medication. The main emerging themes centred on their acceptance and perceived necessity of their medication, the fears and concerns held towards their medication, the perceived impact, actual or potential, that their illness and symptoms had on their lives and willingness to self-manage. The ways in which patients used and self-managed their medicines were determined by an ever-changing balance between their beliefs about their medication and the impact of the illness. The perceived need for pain relief or corticosteroid treatment, for example, can be an important crisis trigger for seeking health care when the necessity of the medication outweighs the barriers to seeking care or the concerns about side-effects, particularly when the perceived impact of the symptoms is felt to be high. Figure illustrates how the category of medicine taking and other associated health behaviours relates to the beliefs about the acceptance and perceived necessity of medication, the balance of fears and concerns and the perceived impact of symptoms. Experience of the illness, knowledge and the relationship with the health care provider can also be influential in this process. This is followed by a more in-depth explanation of the elements within the model.
Model of relationship between categories.
Acceptance and perceived necessity of medication
For the majority of participants, medication was seen as necessary in controlling symptoms or flare-ups despite being seen as a nuisance, concerns for side-effects (mainly steroids) and anti-drug feelings. Acceptance of the necessity to take medication was something that was seen to happen over time and was linked to acceptance of the illness (see table ).
Acceptance of medication taking
Despite general anti-drug feelings, taking medication for IBD had became a normal part of everyday life in the same way that living with the consequences of IBD symptoms had. Moreover, it also allowed the maintenance of what was considered to be a "normal life" in that controlling the symptoms with medication meant decreasing the impact of actual or potential distressing symptoms and embarrassment associated with the illness. "It (taking medication) is something that I do everyday now. So it is nothing out of the ordinary really." (female with ulcerative colitis, 36 years). Nonetheless, for some participants, due to the nature of the disease, being "ill" was sometimes seen as a periodical rather than a continual state and referred to times of flare-up. In these instances, medication taking only occurred during times of "illness". "I only take it (medication) when I need to take it. I wouldn't like to be permanently on medication I suppose, only if I had a really good reason to be.., I mean I will take it when I am ill..." (male with ulcerative colitis, 38 years). Similarly, a participant in the male focus group described his feelings regarding colifoam enemas, which he had been instructed to take regardless of whether he was feeling well. More importance was placed on his negative feelings towards the treatment during remission when the perceived necessity decreased. "In the end I got sick of doing it because it's not natural to want to,.. I am not being crude but sticking something like that up your backside regardless if you are well or not." (male with ulcerative colitis, 54 years).
Individual perceptions of the effects of medications were important in determining perceived necessity. For instance, a few participants described how they had "tested the water" by coming off maintenance medication. Worsening symptoms strengthened their beliefs about the necessity of continued usage. Those participants unable to identify such a direct link reported more inconsistency in their medication taking (see table ).
Although there was awareness of the need to monitor the bowel for the development of cancer, for those patients with ulcerative colitis on 5-ASA therapy, the prophylactic effect of their maintenance medication against colorectal cancer was not mentioned in either the focus groups or the interviews. Due to ethical considerations, being aware of this particular benefit of the medication was not asked as a direct question to groups or during interviews as the researchers did not wish to instil concerns of cancer risk in individuals who were not already aware.
Medication fears and concerns
There was a clear distinction made between steroids and other preparations. Steroids were viewed a lot more negatively than the other "regular" medication taken for IBD and the fear of dependency was greater. Participants talked about both long and short-term side-effects. "It's (taking medication) a fact of life... It is something you have to do to make life bearable; it doesn't bother me at all... They (steroids) bother me... I wouldn't like to be on steroids long-term." (female with ulcerative colitis, 65 years). "That's what's given me the osteoporosis." (male with crohn's disease, 31 years). In general the short-term effects were non-gender specific and verbalised as: "I got mood swings", "it just wasn't me", "you feel euphoric", "I could have eaten the bricks on the wall". Fear of being prescribed steroids could in some cases result in a delay in seeking health care. Experience of the effects of the treatment could, nevertheless, counteract some of the negative attitudes. One woman with ulcerative colitis, for example, described her fear of dependency on steroids after a serious flare-up when her "normal" medication "had stopped working". She had been surprised that her course of steroids had only lasted one week before an improvement in symptoms was evident and this experience had alleviated her fear of further courses, despite her continuing concerns about side-effects (see table ).
Negative attitudes to drugs, therefore, seemed to be related to general anti-drug feelings and to specific concerns regarding steroids, although some severe reactions to azathioprine were also described. 5-ASA therapies did not seem to present any specific concerns in the same way as other medications could: "Asacol is OK", "they've put me on Asacol. They're like a normal tablet", "I take the Asacol 3 times a day. If it's bad, I increase it to 4 or 5 times a day, the enemas I keep down because of the cortisone as much as I can ... the codeine phosphate I keep off if I can", " I have a feeling the Asacol is like a calming gel or something like that". Interestingly the fear of surgery or the need for more "serious" drugs could act as a reinforcer for the need to take medication regularly and seek health care at the first sign of a relapse. "I know how serious it is now you see. At first I didn't, at first I thought it was just a little thing that was passing through and now I know what the other results could be if I delayed. It could be a bag (colostomy) or more drugs more serious drugs." (male with crohn's disease, 26 years).
A range of other drugs were taken by participants, including analgesics, loperamide, prochlorperazine, betablockers, tranquilisers and antibiotics. Medication management became increasingly more complex when medication for other conditions was necessary. There were concerns that medicines may interact with each other, that the body becomes immune after long-term use and a reluctance to be prescribed further medication. These concerns were not always expressed to the doctor and could be influential in delaying seeking care (see table ).
Concerns over long-term and multiple medication use
Perceived impact of actual or potential symptoms
Balancing the concerns of taking medication and the concerns of what might happen without medication was part and parcel of everyday life for those living with IBD. Uncontrolled symptoms could mean pain, embarrassment, faecal incontinence, interference with everyday activities and potential surgery. Just as the acceptance of medication develops over time, concerns over the consequences of living with their illness could also alter with experience, in particular with the severity and frequency of relapses and ongoing symptoms. For many participants, the fear of the impact of actual or potential symptoms is in fine balance with how necessary they perceive their medication to be (see table ).
Impact of actual or potential symptoms on attitudes to medication
Willingness to self-manage
Almost two thirds of participants reported they were keen to self-manage their medication. Around a third had a supply of steroids available to take in case of relapse. This saved them "bothering the doctor", waiting unnecessarily for an appointment or having to get to the surgery when fear of faecal incontinence made travel difficult. "so every time I'm really ill, I take them (supply of steroids at home) .. I don't mind doing that. I mean it's better than keep running to the doctors all the time isn't it? You know I think he'd like me to go more. I'm alright managing it myself to be honest". (male with ulcerative colitis, 40 years). As mentioned above, medication management became increasingly complex when medication for other conditions was involved. Participants provided detailed accounts of the numbers of tablets they took and when they had to be taken. Most of them were keen to self-manage their medication and many felt confident in increasing or decreasing their daily dosage according to the course of their illness. The inability to self-manage a flare-up or usual symptoms such as pain or bleeding and thus the perceived need for steroids or pain relief were the most important factors in seeking health care. Responsibility for medication taking belonged to the patient, albeit in certain cases after "permission" from the doctor (see table ).
Although some participants reported satisfactory relationships with their doctor based on a negotiated approach, directly challenging a doctors decision was felt to be inappropriate. "my doctor is fully supportive of me.. so he tends to say okay what do you want to do with this and I say give me my steroid enemas." (female with ulcerative colitis, 42 years). "I feel azathioprine is the drug that gets me right and he (doctor) always prescribes me steroids... you can't say anything, you feel like you should. My consultant gets me right as soon as I am on the azathioprine." (male with crohn's disease, 30 years). Although the doctor was often seen solely as a "medication provider", the importance of good communication and information is evidenced by the following quote from one female participant from the focus group. "maybe there was some misinterpretation of what I was supposed to do, but I didn't really feel I had enough knowledge to actually handle my own problems.. I would take the tablets and as soon as the symptoms stopped I just stopped taking the tablets... I wasn't really sure what I was supposed to do and it's been pointed out to me quite recently that I wasn't really using the medication in the way that it was supposed to be used." (female with ulcerative colitis, 36 years).