VOL: 97, ISSUE: 38, PAGE NO: 40
Pat MacDonald, BA, RGN, RSCN, HV, is respiratory nurse specialist, the Airways Clinic, St Helier Hospital, Carshalton
Adolescence is a confusing time for most young people, but especially for those who also have a chronic disease such as asthma (Crockett, 2000). A diagnosis of asthma in adolescence is likely to provoke intense emotions as illness forces the adolescent to depend on doctors and medication, and their sense of being ‘normal’ is threatened (Price, 1996).
In addition to all the other changes that take place in the transition from childhood to adulthood, young people with long-standing asthma may have to negotiate the passage from paediatrician to adult physician.
The true burden of asthma is felt in relation to its impact on daily life, with frequent school or college absences, night-time disturbances and restricted participation in everyday activities such as dancing and sport (Lenney et al, 1994). Self-esteem may be damaged by absence from social activities, school or work (Price and Kemp, 1999). A delay in puberty can also occur, leaving the adolescent smaller and less sexually mature than peers who do not have asthma (Price, 1997).
Healthy teenagers often do not understand asthma and the limitations it can impose, so there may be a lack of tolerance at school (Brook and Kishon, 1993). The risk of serious behavioural problems in adolescents with severe asthma is nearly three times higher than in young people who do not have asthma (Bussing et al, 1995).
In older adolescents, exposure to irritants in the workplace may precipitate asthma symptoms (Kulig, 2000). Parents and siblings may feel the adolescent’s asthma restricts their lives, causing friction within the family. There can be resentment about additional chores, such as reducing exposure to house-dust mite, while the need to take time off work during acute episodes can cause problems, particularly for single parents (Simantov et al, 2000). Any of these factors can arouse feelings of worry, anger, guilt, resentment and frustration in the young person (Silvergalde et al, 1994).
The abolition of symptoms and excellent control are the goals of asthma treatment. The young person with asthma needs to know the basic facts about asthma as well as environmental control measures, self-monitoring techniques, the role of medication and the proper use of inhalers. However, non-compliance in this vulnerable age group is high and the ability to understand information about the nature of asthma often bears little relationship to compliance. While education is important, in itself it will not resolve non-compliance (Price, 1996). Poorly controlled asthma in adolescence may also indicate severe asthma that is undertreated rather than teenage rebellion and poor compliance (Crockett, 2000).
Failing to take prescribed medication can exacerbate asthma and lead to an increase in its severity, resulting in the need for more powerful medication and hospital admission (Price and Kemp, 1999). But having to take medication, especially in public, identifies the young person as different from his or her peers and he or she may feel angry and resentful about having to do so. Adolescents cite forgetfulness, lack of faith in medication, denial of diagnosis, difficulty using inhalers, inconvenience, fear of side-effects, laziness and embarrassment as reasons for non-compliance (Buston and Wood, 2000). Certainly compliance is better in children, who are given medication by their parents, than it is in adolescents who are taking medication on their own (Raherson et al, 2000). Perhaps it is not surprising that adolescents are disproportionately represented in mortality statistics (Raherson et al, 2000). Three times as many children aged 10-14 and six times as many aged 15-20 died of asthma during the period from 1990 to 1992 compared with those aged between five and 10 (Price, 1996).
It is difficult for young people to be independent of their parents if they have asthma (Price, 1997), and they may feel resentful if they are unable to speak privately about what troubles them. But if nurses neglect the needs of parents, the price is often the loss of the adolescent patient (Brafman, 2000). It is important to talk to parents and address their fears, but nurses can make it clear from the start that the adolescent may wish to discuss some issues in private and that he or she will eventually be seen independently.
Health professionals should always present themselves from a standpoint of knowledge and empathy, and display a willingness to listen to the patient’s viewpoint (Brafman, 2000). But it can be difficult to get adolescents to talk (Price, 1997). Trying to communicate with a bored, listless teenager whose eyes glaze over at the mention of asthma can provoke anxiety. Nurses, who may be seen as parental figures who criticise, lecture, indoctrinate and dominate, should try a different approach. Working with adolescents demands flexibility. Be prepared for fluctuations in the relationship with the young person and be on the alert for other factors that may be playing a part in the youngster’s life (Brafman, 2000).
Patients may provide clues about personal aspects of their lives or their emotions, and these create opportunities to show our understanding and strengthen our relationship with them (Levinson et al, 2000). Making observations such as ‘you seem a bit fed up today’ and asking open-ended questions such as ‘what are your thoughts about having asthma?’ opens up dialogue and encourages an exploration of difficulties.
If an adolescent feels that the health professional is sufficiently interested and cares enough, a therapeutic alliance will develop and he or she will then be more receptive to advice and education. Information needs to be given personally rather than by means of leaflets, although audio-visual aids can be useful (Van Es et al, 1998).
Adolescence is often a time of intense sensitivity to personal embarrassment and standing out as a user of medication may be intolerable for some. Giving adolescents who have asthma inhalers that are easy to use and can be used discreetly is important (Crockett, 2000). Young people should be shown the range of available devices and be allowed to choose the one they prefer and can use correctly.
It is also worth looking at the health beliefs and goals of the young person in question, and as far as possible tailoring treatment accordingly. Adolescents who are considered non-compliant may become highly compliant with a regimen of their own choosing, and talking through daily routines can provide clues to the ways in which adherence can be improved. Twice-daily medication regimes, which can be carried out privately at home, are preferable. Nurses can explain that good control at home will avoid the embarrassment of having to use reliever treatments in public.
Engaging adolescent patients as partners in planning and implementing management is crucial to success (Kulig, 2000), as is motivating them to create treatment goals that have been negotiated rather than dictated (Bjorksten, 2000).
Adolescents with asthma may represent a group that is particularly likely to take up smoking (Price, 1996), perhaps to boost self-image. Smoking reduces asthma control, and awareness of this danger is no deterrent (Price, 1996). It seems that self-image is more important than health status when it comes to smoking (Price and Kemp, 1999).
Price (1997) suggests that a young person is more likely to seek out a health professional if the emphasis is on healthy living rather than on disease prevention, so it is important not to treat smoking as a crime but to discuss it with the young person in an empathic, non-judgemental and non-confrontational way.
Increasing the knowledge of healthy pupils at school should result in more tolerant and positive attitudes towards young people with asthma (Brook and Kishon, 1993). Peer support is a powerful influence in adolescence and support groups offer an opportunity to share problems and see how others cope with the disease, as well as discussing relationship difficulties that arise as a result of having asthma (Price, 1996).
Adolescents’ medication, delivery devices and inhaler techniques should be regularly reviewed at times that are convenient to them and they should be given the opportunity to discuss any worries or concerns. There has been a growth in the number of adolescent clinics and these are likely to be sought out by young people with asthma (Brafman, 2000).