Poor inhaler technique

Taking inhalers correctly and the difficulties correcting and maintaining a good technique were identified as important practical barriers.

An adolescent described how at a recent hospital clinic visit the consultant wanted to see how she was taking her inhalers. The consultant said she was using her Turbohaler incorrectly and showed her where she was going wrong. She said she now realised why she was using it sometimes up to 30 times before using her own home nebuliser. Since taking the inhaler correctly, she was now using it less than half the number of times. (Female, adolescent, age not stated, participant N.4)

Forgetting to take medication or to request repeat prescriptions

Forgetting to take preventer inhalers was a recognised common factor affecting adherence. The lack of systems to prompt adolescents of the time when preventer inhalers were due to be taken was a particularly relevant barrier. Forgetting about requesting and collecting repeat prescriptions was also mentioned and the help provided by parents in this context valued.

A parent of an adolescent with asthma wrote that their 15 year old son was not very good at remembering to take his preventer inhaler, though mostly remembered to take his pills because he was using a pill box - one with compartments for each day, divided additionally into morning and evening doses - and this had worked very well. (Male, 15, post written by mother, N.50)

An adolescent with asthma replying to a parent said that forgetfulness was a problem and yes an inhaler taking chart could reduce it. If a chart was being used, prescriptions should be better managed by someone else like a parent to make sure a full new inhaler is available at the right time [as adolescents might fail to refill and collect prescriptions]. The adolescent pointed out that one could tick the chart everyday without taking the inhaler, but unless one was willing to make the effort to spray meds in the air instead of taking them, the amount of drug in the inhaler would not go down [and therefore the parent would realise non-adherence]. (Gender and age not stated, adolescent, participant from hidden username group)

Parents’ help with setting up systems such as charts to promote good adherence was reported.

An adolescent wrote that her mother sorted all her repeats so she knew exactly how quickly she was getting through her supplies of inhalers. If she deemed he/her was going through the blue inhaler (of which she was only allowed one - and was fined if was caught without it) too quickly then he/she had to go and explain to the GP, which he/she knew was likely to increase all regular medication. (Gender and age not stated, adolescent, participant from hidden username group)

As outlined in the PAPA, non-adherence could be the result of a combination of forgetfulness (a practical barrier) and perceptual factors (described more in detail in the next section).

An adolescent with asthma wrote that having busy lives, together with [unspecified] negative connotations concerning inhalers and medications to teens were important causes for forgetting to take them. (Female, age not stated, adolescent with asthma, N.32)

Parents’ involvement in inhaler treatment

Parents not engaging with asthma diagnosis and inhaler treatment was mentioned as a practical barrier. There were reports of parents not believing their child’s asthma diagnosis and therefore not helping with practicalities like reminding preventer doses times and managing prescriptions.

An adolescent wrote that her parents did not believe her asthma diagnosis to be true, so she had to force herself to remember to take her preventer inhaler. She found that it helped putting it next to her toothbrush, so that she had to move it out of the way to get to her toothbrush. After picking it up there was no point in her not taking it. (Female, age not stated, adolescent, N.28)

An adult with asthma thought his/her problem stemmed from when he/she was first diagnosed with exercise-induced asthma in early teens and his/her mother said it was ridiculous how doctors just dish out inhalers carelessly. Unfortunately as the years went on [without proper inhaler treatment] his/her asthma has got progressively worse and she suffered with frequent exacerbations. (Gender and age not stated, adult with asthma, participant from hidden username group)

Characteristics of inhalers and involvement of adolescent in choosing a device

The characteristics of inhalers themselves could affect adherence to treatment because of the mechanism of action (eg, metered-dose inhaler (MDI) vs turbohaler) or their particular design.

Seeking help from general practitioners (GPs) or hospital consultants about treatment adjustments if problems arose was reported as facilitators to adherence.

An adolescent wrote that he/she was diagnosed with asthma when aged 14, and had really poor adherence for her steroid inhaler for the first year. She replied to a parent who was struggling with getting her teenage son to take the preventer inhaler, asking whether she had talked to the GP or asthma nurse about the problem. She said there may be an alternative delivery device that her son could find more acceptable than the one he's got. He/she admitted that for some reasons he/she did found much easier to comply with the turbohaler rather than the MDI. She added that it might be possible to get a stronger inhaler so that he had to take fewer puffs each time, which would take less time and that, if he could choose the delivery device, he might have felt more in control and more willing to take responsibility for his asthma. (Gender and age not stated, adolescent, N.13)

An adolescent commented that a suitable carrier for a turbohaler would be a mini baby sock, similar to mobile phone socks. She said the turbohaler did look a bit like something one could buy in shops selling lingerie among other things [meaning a sex toy]. (Female, age not stated, adolescent, N.21)

Another adolescent replied to this post saying she also felt embarrassed about using her turbohaler in public, for the reason mentioned by the previous user. Her advice was for inhaler designers to make the shape of turbohalers less suggestive. (Female, age not stated, adolescent, N.22)

Asthma treatment cost and exemption certificate bureaucracy

The cost of asthma treatment for adolescents following completion of education was mentioned as a potential obstacle to good adherence, as well as the difficulty in getting prescription exemption documents.

An adult with asthma wrote that when one gets to University there will be a place where one gets advice on medical exemption certificates. In his/her experience, to claim this there was a fairly comprehensive booklet to fill. He/she said it was so complicated that she gave up after a couple of pages and just paid the full charge and avoided going to the doctors or getting prescriptions when his/her funds had run low. This however contributed to intermittent adherence and getting pleurisy and cracking a rib through excessive coughing, which he/she never actually went to the doctors about. Retrospectively he/she thought that if he/she had gone to the doctors, they might have seen the signs of an asthma flare up. (Gender and age not stated, adult with asthma, participant from hidden username group)

These results suggest that the online forum represented a source of practical information and support for adolescents’ users.

Illness and treatment representation in adolescents

Putting into discussion the diagnosis of asthma was mentioned in several posts, a view that precipitated deliberate non-adherence.

An adolescent stated she was a teenager and her adherence to inhalers was really bad. She reflected she was getting into a pattern of taking them and then feeling ok and so started thinking she did not really need them and that she had been ‘over-diagnosed with asthma’. She then decided to prove she did not need to take them – to prove she did not have asthma. She admitted she knew she shouldn’t but at the same time she did not want the inhalers, if that was making sense. (Female, adolescent, N.28)

An adolescent wrote that she was not sure scare tactics by parents work as a general rule as adolescents tend to believe that they are immortal and a severe asthma attack will not happen to them. (Adolescent, age and gender not stated, N.13)

Directly observed treatment was considered a facilitator to adherence in this respect.

A woman with asthma replied to a parent worried about his son not taking inhalers, saying through her non-compliance as a teenager, she ended up with appalling lungs. When she was a teenager she just had a blue and brown inhaler, and didn't take either of them. She could not explain why and added that it might be down to teenager needing a reason to rebel. As an adult, she reflected that, at the time, she wasn’t mature enough to make those decisions, and didn’t really understand the implications. Telling an adolescent they have asthma doesn’t necessarily mean they accept / internalise the diagnosis - it’s not the same as experiencing an asthma attack which makes one end up almost ventilated in ITU, so reinforcing the diagnosis through experience. Being told to take inhalers can be just words, and go in one ear and out the other. She stated she was not convinced any adolescent has the capacity to weigh up the risks and benefits long term of those kinds of decisions. Hence, she would not take it on trust that any child was taking their medications and would stand and watch them, tantrums or not. (Female, 40 years, participant from hidden username group)

Experiencing the consequences of non-adherence as a driver of necessity beliefs

Adolescents described that suffering severe asthma attacks or experiencing deterioration of asthma symptoms due to lack of adherence to preventer inhalers was an important signal of the high value of preventer treatment and triggered improved inhaler taking behaviour.

An adolescent wrote that she was keeping a diary of the exercise she could do (something she also did when she was diagnosed) and used this to show to herself that if she did not use her preventer for a few days, she went down 4 times on the number of minutes she could exercise for, and if she missed it for a week then she could manage just few minutes. This type of self-monitoring worked to remind her of how much of an impact taking the preventer inhaler can have, and made her think that taking her inhaler was far less hassle than having to stay inside all day and having to use the lift all of the time. (Female, age not stated, adolescent, N.28)

Parents did play a role in the process of changing inhaler taking behaviour in adolescents.

A parent of a 19 year old who has moderate asthma wrote that having once had to get up at 3am to drive several miles to take the son to A&E because of a severe asthma attack gave a huge wake up call. The parent admitted that every now and then they still had to remind him to take his preventer and his technique was poor if he was in a hurry but at least he was getting some of it. (Male, 19 years, post written by parent, N.53)

Parents could in fact be instrumental in creating a sense of responsibility for asthma adherence by, for example, properly discussing the need of regular preventer inhaler treatment.

An adolescent suggested to a parent to have a serious chat with his teenage son about the need of taking his preventer inhaler regularly, preferably at a time when both were feeling calm and not likely to be interrupted. He/she added that being late, stressed and in a rush to leave the house makes it the worst time to be getting into a discussion about inhaler treatment. He/she reflected back that some of the worst discussion she ever had with his/her parents on the subject used to be in that situation, when they were all stressed anyway. (Adolescent, age and gender not stated, N.13)

Suffering side effects of treatment (eg, weight gain, spots)

An adolescent was asking whether anybody could tell him/her whether there were any preventers that did not contain steroids. He/she had a weight problem at the best of times but felt even worse since being started on steroid inhalers months earlier. He/she was also getting spots on the face and neck, something that they never had before, and slight puffiness in left leg/ankle. He/she believed all of these were potential side effects of the steroid inhaler and said these were really getting him/her down. (Age and gender not stated, adolescent, N.1)

An adolescent commented that the physical side effects of asthma drugs were ‘a tough one’. She commented that, in contrast with what was happening with most severe asthmatics, for some reason she could not keep the weight on. She was actually losing weight on prednisolone and for her it was a constant battle not to be too underweight. She was getting no end of grief from her boyfriend, friends, family etc. about being too skinny. (Female, age not stated, adolescent, participant from hidden username group)

Uncommon side effects like shaking hands after preventer inhalers were reported.

Finding ways to deal with such side effects was a potential facilitator of adherence to inhaler treatment.

An adult with asthma commented about the hand tremor linked to steroid inhaler use mentioned in the forum by an adolescent and the ability to play instruments. He said that he was taking 4 puffs of steroid inhaler in the morning and night amongst other medications, and it gave him serious tremors in the hands. These went away after a couple of hours, so he was suggesting that if one can get in the habit of taking inhalers regularly early in the morning, one would probably find that they would be able to play an instrument when needed. He was suggesting that if one can get asthma well under control, one would then need little or no reliever, minimising the risk of additional tremors caused by the salbutamol inhaler during the day. (Gender not stated, 44 years, adult with asthma, N.49)

There was evidence of users complaining of suffering from new side effects since being switched to a different inhaler by their GP practice due to cost-saving prescribing policies rather than on clinical grounds.

An adolescent commented that he/she too felt that his/her preventer inhaler was changed rather quickly. From a preventer which was probably the one controlling better his/her breathing, to a new one. He/she was quite bewildered at the time. From the very start of using the new preventer his/her breathing worsened, and he/she suffered from heart palpitations that have got steadily worse to the point that he/she could not lie down. He/she finally found out symptoms were probably down to the new preventer. A quick search on internet revealed quite a lot of people with a similar story. This was making him/her wonder whether the side effects of this inhaler have been played down or under reported and about the apparent over keenness of GPs to prescribe it. (Gender and age not stated, adolescent, participant from hidden username group)

Social representation of asthma and inhaler treatment

Asthma and inhaler taking was perceived as characterising weakness or a neurotic personality.

Adolescents with asthma often talked about feelings of embarrassment about the asthma diagnosis and taking inhalers, which could indirectly impact on the acceptance of the diagnosis and the need for taking preventer inhalers when patients feel well. Being seen taking an inhaler caused embarrassment and the people around them were felt as not approving of it (see relevance of the word ‘people’ in online supplementary figure 1). Although not overtly mentioned, the stigma that prevents inhaler use in public seemed likely to also impact on private preventer adherence. Interestingly, social norm words like ‘people’ were absent from posts written by parents (see online supplementary figure 1).

An adolescent wrote that he could not fully understand why he had insecurities (with asthma and inhaler treatment). He reflected that part of it was to do with not wanting to be treated differently or as an ill person. He said that he still was getting offended when asked whether he was ok! He thought the other part of it had to do with the general stigma attached to being an asthmatic and using an inhaler. It was so regularly portrayed in films as being more of an emotional/psychological problem suffered by over anxious people, which was then magically fixed by a quick squirt of the blue inhaler and all is well again. He added that until there is a greater public understanding of the different types of asthma and how they affect people, sufferers will continue to feel embarrassed. (Male, age not stated, adolescent, N.15)

An adolescent wrote that he/she felt still quite embarrassed when needing to take her reliever inhaler. Even more since recently he/she had put on lot of weight due to an underactive thyroid and people generally would think he/she was wheezing because he/she was fat not because of asthma. (Gender and age not stated, adolescent, participant from hidden username group)

An adolescent wrote that he/she was using inhalers in private and never talking about his/her illness. This user commented that there were not many people who knew he/she had asthma, unless he/she had an attack in front of them. In that case he/she could not hide it and would use a [normalising] statement like saying that he/she thought that many people suffer with asthma. He/she added that generally people see asthma as a weakness and some people are just ignorant and could become quite scared when a severe attack comes and perhaps, depending on how bad one’s asthma attacks could be, would be better if others knew so that they could help, hopefully, and not with a paper bag [as one would do for a panic attack], as that one for sure would kill him/her. (Age and gender not stated, adolescent, participant from hidden username group)

Exclusion from social activities

The asthma diagnosis and the associated need to take inhaler treatment in public had important consequences on adolescents’ social life. This could lead to derision (even from ‘friends’) and social exclusion, for example, for not taking part in social activities like drinking and clubbing.

Positive thinking and focusing on ‘what one can do’ were suggested as ways to deal with this barrier.

An adolescent described that she and her friends had just finished exams and therefore many people were celebrating with drinks. She commented it was hard for her seeing everyone else doing it and being a bit envious at the fact that they could be so carefree. She was asking other users about what was their strategy if going out to drink, whether having one first drink and then stop or rather making one’s drink last. She said in the meantime she made up a checklist of things that she could which she stuck on her wall to cheer herself up. (Female, age not stated, adolescent, participant from hidden username group)

An adolescent suggested that if friends were giving grief because of being unable to join them, then the best would be to ignore them - and try not to be bothered if they needed alcohol to have a good time. She continued saying that this did not mean that one should [drink] and that one could not have just as much fun. She admitted she started to enjoy that time of her life much more when she focused on what she could do/did enjoy rather than always focusing on what she could not/should not do. (Female, age not stated, adolescent, participant from hidden username group)

Public ignorance of asthma and inhaler treatment

The burden of ignorance about asthma disease and inhaler treatment was especially felt in mild to moderate and asthma without prominent/audible wheeze.

An adolescent admitted always feeling a bit foolish taking an inhaler when out in public (and in front of some family members too). Sometimes, he/she added, the way people look at people with asthma when they are showing no signs of an attack, maybe just having tightness in the chest which could not be seen by others. The impression was that they thought people with asthma were just putting on a scene, this was how he/she felt. He/she added that it was even more stupid looking for him/herself because they had to use inhaler with a spacer, which made him/her feel even more embarrassed. (Gender and age not stated, adolescent, participant from hidden username group)

An adolescent, commenting on mild asthma and inhaler treatment, wrote that he had received the comment that he was suffering from just a sort of cough, because that was all they could see. He went on saying that they did not see the medications, the endless doctor’s appointments, or nurse visits, or clinics, hospitals, specialists. They did not see the jabs, the avoidance, the hospital stays. They did not feel the tight chest, the pain, the fear. They did not see anything beyond a cough and a puff or two. (Male, age not stated, adolescent, N.29)

An adolescent described that when trying to get a GP appointment because her asthma symptoms were playing up and her peak flow was sliding down, she was told by the receptionist that surely an appointment the following week would have done, as it ‘was only for asthma’. She commented she was lucky not to have brittle asthma. (Female, age not stated, adolescent, N.36)

Even healthcare professionals were felt at times not to have a full knowledge of asthma and of the existence of asthma without predominant wheeze. A few participants in 2015 exchanged posts of frustration describing some doctors saying that their chest was clear and therefore asthma was not out of control, despite their symptoms of breathlessness, frequent need of reliever inhalers and a decreased peak flow.

An adolescent wrote empathising with somebody else in the forum that he also never wheezed, yet he was getting lot of comments from doctors that his chest was clear and ‘all good’. He stated that he did say he never wheezes, except when having an allergic reaction to latex, otherwise no wheeze at all. He commented that he hated [hated repeated 5 times] being told about the absence of wheezes and thanked the other user for making him feel he was not alone. (Male, age not stated, adolescent, N.29)

Public awareness of asthma and inhaler treatment could be improved by self-awareness of the disease and adolescents considering themselves as ‘ambassadors of the disease’.

A participant kept reminding him/herself that seeing someone else using an inhaler wouldn’t make one feel odd about it, or think that they should feel embarrassed. This has helped to counteract the embarrassment and now the user tended just to get on with it. (Gender and age not stated, adolescent, participant from hidden username group)

An adolescent with asthma wrote how having attacks during sport sessions and taking inhalers publicly created the opportunity to explain asthma and for people to realise that the disease did not preclude the possibility of obtaining excellent sport performances. The participants went on saying that being an ambassador for asthma can be annoying at times and it might be frustrating that so many people are ignorant but trying and let people learning a bit more might help them realise that asthma is a highly variable condition and that it ‘isn’t just a joke’. (Gender and age not stated, adolescent, participant from hidden username group)