Background. Non-compliance with prescribed anti-asthma medication is considered to be a major problem. The reasons why adolescents may fail to comply with their regimen are poorly understood.
Objectives.This study set out to understand better the reasons for non-compliance in adolescents with asthma.
Methods.In-depth interviews were conducted with a sample of 49 adolescents, aged 14–20 years, diagnosed as asthmatic more than a year previously and attending a hospital asthma clinic in Greater Glasgow. The interviews focused on young people's feelings about their illness and on their illness-related behaviour, including self-management.
Results. Most of the young people interviewed admitted that they had not always complied with their self-care regimens. Reasons given for non-compliance with prescribed medication in the past or at present were: forgetfulness, belief that the medication is ineffective, denial that one is asthmatic, difficulty using inhalers, inconvenience, fear of side effects, embarrassment and laziness.
Conclusion.Most of those interviewed believed that compliance with prescribed medication was extremely important, with many having formed this belief following a negative experience which they attributed to their non-compliance. Nevertheless, barriers exist which mean that optimum self-care is not always achieved. It is suggested that future health care initiatives in this area be designed to provide practical information which aids the surmounting of these barriers and helps children and adolescents to be sufficiently aware of their own vulnerability at an early stage of their career as asthmatics. Peer education initiatives may meet these objectives, and more thought should be given to their development and optimum form.
Buston KM and Wood SF. Non-compliance amongst adolescents with asthma: listening to what they tell us about self-management. Family Practice 2000; 17: 134–138.
Asthma is a substantial health problem among adolescents.1 Optimum drug treatment and good care can convert it from a major handicap to a minor inconvenience,2 yet it continues to be an important cause of morbidity and mortality. It causes much disability due to days lost at school,3 and many of the 60 000 deaths from asthma that occur in western countries each year are in young people.1 Poor self-care is an important contributory factor;4 compliance with prescribed pulmonary medication may be as low as 30% in general practice.5
It is recognized that treatment regimens are often complex, making optimum self-care difficult,6 and that attitudes may mediate against compliance with medical advice.7 Factors that may reduce compliance amongst adolescents, however, remain largely unknown.4
The study reported here used qualitative methods to elicit detailed information from adolescents with asthma regarding their self-management behaviour. Data reported focus on the adolescents' own understandings and explanations of their behaviour and, as such, may be of use as a starting point in designing general practice-based strategies to improve the quality of self-management amongst this group.
Patients aged from 14 to 20 years old attending hospital asthma clinics in Greater Glasgow, and diagnosed as asthmatic more than a year before this study took place were deemed eligible to participate in the study. By recruiting from hospital asthma clinics, we hoped to access those young people with experience of chronic and relatively serious symptoms in order to elicit narratives from those for whom experiences of asthma and ‘being asthmatic’ were likely to have been particularly salient. All of those approached agreed to take part and were interviewed subsequently, though, on the advice of the GP or consultant of particular patients, not all those meeting the eligibility criteria were approached.
The sample studied here is not representative in the statistical sense: the research questions were deemed to be answered more appropriately by an in-depth examination of a small number of respondents accessed as described above than by a more limited examination of the views of larger numbers sampled statistically. In order that readers may be able to generalize conceptually from the results presented, however, it is useful to describe the characteristics of the sample.8 The mean age of the sample was 15.6 years. Twenty-nine patients were female, 20 male. The mean age of diagnosis was 4.9 years, with 38 of the 49 young people diagnosed when aged 7 years or younger. Only three had been diagnosed during the preceding 2 years. Thirty-five of the sample were still at school, seven were in further education, five were unemployed and two were in full-time employment. Twenty were recruited from paediatric asthma services, the remainder from adult asthma services. Twenty-eight respondents had been prescribed oral steroids at their last consultation and 20 had been hospitalized in the previous year. Those young people who were eligible to participate in the study, but who were not approached, were described by their clinicians as having behaviour problems or as being very inarticulate (thus less likely to be able to participate usefully in an in-depth interview) and were all younger adolescents. Hence this hospital clinic-based sample is biased towards adolescents with greater social skills.
Forty-nine adolescents were interviewed using the purpose-designed interview schedule. The interviews were conducted in an informal manner by a young female non-clinician. The schedule was designed to gather data on the impact that having asthma had had on all aspects of the young person's life. Topics covered included: ‘day to day limitations’, ‘family life’ and ‘the future’ as well as ‘medication and taking care of yourself’. Participants were encouraged to talk, at length, about their views and experiences regarding asthma in all of these areas. In addition, the Offer Self-Image Questionnaire9 was administered and case notes were accessed. Data collected during the in-depth interview are reported here.
Most of the interviews were conducted in the young person's own home. A small number chose, instead, to come to the University Department in which the work was being carried out. Complete privacy was requested and granted in all but one case where the father insisted on being present throughout the interview. Interviews ranged in length between 20 and 165 min, with a mean length of 48 min.
The interviews were tape-recorded, transcribed in full and analysed qualitatively, following a grounded theory approach and using NUDIST, a computerized package aiding qualitative data analysis. An account of the analytical approach adopted for this particular study has been detailed elsewhere10 and so will not be repeated at great length here. In summary, in all 49 transcripts, each comment or section of dialogue relating to issues of compliance with the self-care regimen was indexed as such, allowing further analysis to focus on this topic. On examination of these data, a further coding frame was developed, designed to explore in greater depth the young people's reasons for complying or not complying with elements of their regimen and in order to generate a theory of adolescents' self-management of asthma medication. In line with Seale and Silverman's11 recommendation, counts of categories and types of comments are presented here where this is to be thought helpful and appropriate in order that readers can gain a sense of how representative and widespread particular instances are within the sample studied.
Of the 49 young people interviewed, only four told the interviewer that they had always, and continued to, take their medication as prescribed. Of the 45 who admitted to instances of non-compliance, either in the past or ongoing, most reported compliance with at least one aspect of their regimen most of the time. Several themes emerged from the analysis of the transcripts relating to instances of non-compliance. Table 1 outlines these, showing the number of interviewees who talked about each (note that a small number of interviewees gave more than one reason). The most common form of non-compliance was failure to take one or more of the prescribed drugs at all for a period of time, although two respondents admitted to using their inhalers more than they knew that they should on a regular basis. Each category will be discussed briefly.
Forgetfulness was common, with over half of those who talked about instances of non-compliance citing this as a reason (see Table 1). Many of these same young people talked about the importance of taking their medication as they should, expressing genuine regret that they did not always remember. Medication to be taken in the morning was a problem for some, as they rushed to get to school. Being away on holiday or another temporary lifestyle change were also reasons given for forgetfulness. The importance of incorporating the medication regimen into the daily routine was stressed in this context. It was when the daily routine or the regimen itself changed that forgetfulness was most likely to occur. For example, one interviewee (No. 12) said:
“At the weekend I’m fairly poor [at remembering] because I go out quite a lot at nights and come in late. I generally forget then, or if I’m up really late in the morning I quite often forget, but during the week I generally remember, ooh I’d say five days, because I’m up, in a set routine.”
The role of relatives and friends in reminding the young people to take their medication as and when they should was, unsurprisingly, important. Although many of the young people talked about being annoyed by such concern, particularly when it came from parents, it appeared to be an effective way of keeping these youngsters on track.
Belief that medication is ineffective
Several of those interviewed believed firmly that particular elements of their regimen were having no effect on their symptoms. These adolescents believed that they knew themselves, their bodies and their illness better than their doctors did, and as such it was ‘safe’ to veer from medical guidance. Their advised regimens were complex, and none abandoned these completely but instead ‘played around’ with selected aspects. For most, time had passed without adverse consequences and they therefore felt justified in their decision:
“I take my inhaler but I’m playing around with the rest of it because I don’t really need to take it. I don’t feel the need to take it because as I am now I can run about fine and everything and just don’t really need to take it”. (No. 11).
Only one of these seven respondents (No. 44), by the time of the interview, had been hospitalized. She blamed this on her failure to comply with medical advice, reporting that she had learnt from this experience:
“I stopped taking my inhalers for a while [laughs] cos I thought I didnae need them so I just stopped taking them. I never told anyone but I just stopped taking them. I'd been all right for a wee while but then I was in hospital. I was in hospital at the end of the year and I think it's because I stopped taking them for a wee while and then it just built-up”.
Amongst the sample interviewed for this study, denial was articulated as a phase that a small number (see Table 1) had gone through. It may be that denial tends to occur more in childhood years, with youngsters having ‘grown-out’ of this phase by the time they reach adolescence—certainly those interviewed tended to express their denial in such terms. Alternatively, it may simply be that no one in denial was recruited to participate in this study. It may also be that denial tends to occur for a period immediately or shortly after diagnosis—again, amongst those interviewed here there is evidence of this. Only one interviewee (No. 2) appeared still to be in a state of denial at the time of the interview. She continued to boycott her medication, despite having spent time in hospital which she acknowledged was a direct result of her refusing to follow her regimen. This interviewee had been diagnosed with asthma relatively recently. She told us:
“when I first got diagnosed, maybe about three months after, I went through the stage of ‘I haven't got asthma, that's it’, and I ended up having a massive attack from not taking the medication. I suppose I still think a bit like that—I hate the asthma, I don't want to have it. I take it [the medication] on and off sort of thing”.
The other respondents, however, talked of ‘learning from their mistakes’. As one told the interviewer:
“When I was younger you feel ‘I don't need that’ and you want to go out and play. There's a young age, say about nine to ten, you're too busy playing football, going out on your bike. You just forget about it deliberately, deny it to yourself . . . you just wished I never had asthma cos it's stupid”.
He talked about how he has gradually learnt to follow his regimen:
“cos I've realised if I don't take it [medication] it's just going to get worse. I say I don't need it, but I do”. (No. 1).
Similarly, one young woman told us:
“they asked me to talk to this person at school who had asthma, sit and explain to him how I felt about it . . . I don't mind doing that because when I was diagnosed I had nobody doing that for me and it made it harder for me to come to reality and say ‘I've got asthma now’. I denied I had asthma, totally denied it. I just pictured my gran lying in bed, gasping for breath and I thought ‘that's going to be me’”.
She talked about how this refusal to admit to herself she had asthma meant she failed to follow her regimen, until she was hospitalized:
“I just wanted to forget about it [the asthma] and get rid of it and I didn’t take my inhalers properly but I got a fright in hospital and now I take them just like that” (No. 9).
Difficulty using inhaler
Four of those interviewed described how they had not been able to master the correct usage of inhalers in the past. This was something that was eventually learned.
One young woman described how her spacer was too big to carry around with her (No. 49), another (No. 13) described how she did not always have time to change the discs in her inhaler device, a third (No. 8) reported her difficulty in finding time to use her nebulizer:
“When I was on my nebuliser I tried to take it every morning and every night but it's like 20 minutes at a time. You don't like to tell doctors that because they might think you're ungrateful for the machine because it is quite expensive”.
Three respondents mentioned embarrassment as a reason for non-compliance. All of these young women talked about having grown out of this.
Fear of side effects
In general, the young people felt they were aware of the potential side effects of various drugs, but stressed that their own symptoms needed to be treated and were being treated in the best way possible. Only two of those interviewed told us they did not take their medication as they should because of side effects—one (No. 5) described experiencing such effects, another feared he may do so in the future (No. 12).
Finally, one girl (No. 23) told us she simply “could not be bothered” following her regimen and did not do so unless her symptoms made her uncomfortable. This can be seen in the context of the discussion above headed ‘belief that the medication is ineffective’. Perhaps if she truly believed that her medication would prevent symptoms from emerging, she would be more likely to find the energy to follow the prescribed regimen more closely at all times.
It is interesting to note that most of the young people who talked about failing to comply with their medication believed that their physician(s) were not, or had not, been aware of this. For the extreme cases, when hospitalization had occurred as a result of poor self-care, discussion with clinicians regarding improved compliance had ensued, but others reported that it was a relative, usually the mother, who had insight into failure to take medication as one should and who attempted to ‘police’ compliance with the regimen. This policing was often successful, particularly in cases where non-compliance was due to forgetfulness rather than to any deliberate decision on the part of the adolescent not to comply.
It should be acknowledged when considering these findings that this sample is comprised of those young people motivated enough to participate in such a study as this; they were recruited as a result of having complied with at least one request to attend a hospital asthma clinic and they were judged by their clinicians as suitable candidates for collecting useful in-depth data through interview. They did, however, comprise the majority of 14–20 years olds with chronic asthma attending hospital asthma clinics in Greater Glasgow at the time of this study.
It is noteworthy that the overwhelming majority of these young people expressed a firm belief that taking one's medication as one should was extremely important, with even those who expressed a belief in the ineffectiveness of some components of their regimen believing, generally, that compliance was crucial. This attitude was accompanied by a high level of knowledge about medication and self-care measures amongst nearly all of those interviewed.
However, this belief in the importance of good self-care and this high level of knowledge did not necessarily lead to optimum self-care. Many of the reasons given by the young people for non-compliance can be conceptualized as barriers that adolescents do not always manage to surmount in their attempts to take their medication when and as they have been advised.
It is also noteworthy that negative experiences have often been the necessary precursor to the adoption of these largely ‘sensible’ views. Many of those interviewed acknowledged that a particularly bad attack or series of attacks, sometimes resulting in hospitalization, had resulted directly in them reassessing their views and behaviour. In a small number of cases, the young people interviewed described experiencing what appeared to be near-fatal attacks (these incidents were verified using case notes). Perhaps others of their contemporaries were not so fortunate in the outcome of such attacks.
In the light of these findings, it seems that current health care provision may not always succeed in effectively providing practical information, as opposed to factual information about the illness and the medication, designed to help young asthmatics to surmount the barriers to compliance that they experience; and/or effectively provide information which makes children and adolescents sufficiently aware of their own vulnerability. Although only a minority of the respondents interviewed here talked about denial of having asthma, a greater number appeared to have been in denial at some stage with regard to the potential seriousness of the illness. Believing that “it's only asthma”—a phrase that appears often in the transcripts—may be beneficial in avoiding scare-mongering and stigma and ensuring that the illness is not central to the young people's lives, but it may also result in a failure to confront the possibility that serious consequences may result if self-care is not a priority. It may be that asthma education should seek, in greater part than it appears to have done thus far, to provide the kind of knowledge and information that at present appears to be coming primarily from negative personal experiences. GPs may have an important role to play in mediating such practical advice.
Clinic-based peer education initiatives, in the general practice or hospital setting, may be a low-cost strategy worthy of further development in this context. Although the authors are not aware of any such schemes operating in this country, peer counselling has been seen as a valuable strategy in the management of adolescents with a variety of health problems in Canada.12 Findings reported here suggest that the advice of other young sufferers may provide a credible supplement to the advice of doctors and others, who were highly respected by the young people interviewed here, but often regarded as unable to understand properly what it is like to be young and asthmatic, and who often, according to these young people, fail to realize and/or acknowledge that medication is not being taken as advised. Hearing, or reading about, someone like themselves who has ‘survived’ his or her teenage years as an asthmatic and who faces similar issues to them may be beneficial to these youngsters who are themselves doing their best to learn to live with the illness. The appropriateness and feasibility of such an intervention are research questions which merit further attention.
|Reason||No. of respondents|
|Difficulty using inhaler||4|
|Fear of side effects||2|
|Reason||No. of respondents|
|Difficulty using inhaler||4|
|Fear of side effects||2|
We thank the young people who participated in the study and their doctors who facilitated this. The study was funded by the Scottish Higher Education Funding Council (SHEFC).