Karen Iley describes how having asthma affects the everyday lives of children and young people and explores how primary care nurses can support schools in managing this condition
RN BSc(Hons) MSc PGCert
Lecturer in Nursing School of Nursing, Midwifery and Social Work University of Manchester
_ Asthma is the most common chronic disease of childhood in the UK, affecting more boys than girls. Social factors such as ethnicity, poverty and geographical location are associated with higher rates of asthma
_ Most published literature about asthma focuses on biomedical rather than social factors. Since the publication of government policies emphasizing the need for child-centred health and social services, there is a need to ensure that these are implemented in primary care and other health settings
_ Children view their health and experiences of illness differently from adults.Despite this, health care professionals focus on parents' (and therefore adult) interpretations of health and illness _ Primary health care professionals such as school nurses and practice nurses have a role in promoting good asthma management in schools
_ Communicating with parents is essential as they may have different beliefs and expectations about their child's asthma from those of the primary care team. Recognising the parents' role in shaping their child's health beliefs and management of their asthma is important for all health care professionals working in primary care
Boys seem less willing than girls to take prescribed medications for asthma. Fear of being stigmatised makes them reluctant to use inhalers except to relieve symptoms, and they tend to avoid using them for prevention
Most of the published literature about asthma largely focuses on biomedical issues such as the causes and treatment of asthma rather than the social factors that affect the everyday lives of children1. This paper explores the main social issues that affect children with asthma and their families, and how knowledge of these issues can enhance clinical practice in primary care. Since the publication of Every Child Matters2 and the National Service Framework for Children, Young People and Maternity Services3 there has been a shift towards health care and services being centred on meeting the needs of children. These issues are particularly relevant to all practitioners working in primary care. Asthma can be defined as the presence of more than one symptom such as wheeze, breathlessness, cough, chest tightness and variable airway obstruction4. It is the most common chronic disease of childhood.
Despite a slight reduction in rates of childhood asthma since the 1990s, the UK still has one of the highest rates of asthma in the world4,5. Currently asthma affects around 5.2 million people in the UK including 1.1 million children6. This suggests that treating and preventing asthma symptoms is a priority for primary care health care professionals.
Asthma and its impact on children and adolescents
Asthma is more common in boys than girls in the UK but the opposite is found in adults4,7. Some ethnic minority groups are more likely to have asthma, such as Irish and African-Caribbean children living in England8. Yet hospital admission for asthma is highest amongst South Asians, which suggests there is a need to target this group in primary care9,10. However, caution is needed when considering ethnicity: not all groups often located under the umbrella term of South Asian experience high rates of asthma11. There is also evidence that children living in poorer households are more likely to have asthma5,8,12. Recent evidence confirms this further. There is a wide variation across the UK, with those living in the north of the country having higher rates of asthma than those living in the south13.
Children's views on health and illness
Before considering the health needs and illness experience of children, it is necessary to look at how children view health and what they understand about it. It is known that primary school age children can identify factors that promote health and those that contribute to poor health, as well as understanding health promotion messages14. Schools have focused on this with the introduction of Healthy Schools and by including eating healthily as part of the primary school national curriculum3.
Another factor that can influence children's views about their own health is that they may have contradictory roles at home and at school which can create problems for them. At home they are expected to take on some responsibility for themselves, including their health, whereas the social order of school inhibits this responsibility and children are expected to conform to what the school expects or requires15.
One problem children and adolescents may face is that their claims of being ill may not be believed unless an adult has confirmed these. A further problem is that adults seem to use an adult interpretation of illness when listening to the children's claim of feeling unwell and this may influence how they deal with the child16. Attitudes such as these can result in conflict for the child, who needs to manage their asthma as well as learn to develop strategies for minimising symptoms. A good method of establishing how well controlled a child's asthma is might be to ask about their ability to take part in activities they want to include in their daily lives, and what activities are limited by their asthma17. Care is needed when asking parents about their child's asthma symptoms, as it has been found that there is variation in the interpretation of terms such as wheeze, shortness of breath and cough18.
There are gender differences in how children view their own health and deal with illness. There is evidence that girls are more likely to incorporate their chronic illness into their social identities and are much more likely to disclose their illness and be prepared to treat themselves in public settings7,19. Girls seem to be more negative about the impact asthma has on their lives and are more likely to curtail aspects of their lives such as sport. This may go some way to explaining why girls who are overweight are more likely to have asthma7. Adolescent girls are more likely to smoke and to experience wheezing7.
In contrast, boys are less likely to accept that their asthma is part of their male identity. They are more likely to minimise the impact of the illness, seeing it as a stigmatising condition, and are more likely to participate in sporting activities - a key factor in constructing a masculine identity19. Boys seem to be less willing to take prescribed medications and more willing to tolerate some asthmatic symptoms or risk admission to hospital19,20. Because of fear of being stigmatised and labelled as ill, they use strategies such as using inhalers only to relieve symptoms, rather than using regular preventive inhalers19.
Children with asthma miss more days from school than other pupils21,22, although this does not have an impact on educational attainment compared to children without asthma8. Many children experience sleep disturbance caused by wheezing which may also interfere with daily activities and attendance at school5.
The role of teachers in assisting children with using inhalers, especially when having an acute asthma attack, is problematic23. Teachers are seen as people who should be informed if an asthma episode has occurred rather than having an active role in managing the child's symptoms24. Overall, teachers are seen as the main source of adult help outside the home. Although many schools have policies concerning asthma, the supply and use of inhalers needs to be prescribed by a medical practitioner and therefore presents a legal and professional problem for all concerned23.
How children perceive the role of the school in dealing with their asthma in all situations is an area in which primary care nurses, especially school nurses, have a role to play. It has been suggested that teachers' lack of knowledge, poor co-ordination of care and a lack of robust policies in schools is fairly common23,25,26. However, recent guidance has been produced in an attempt to overcome the difficulties faced by children in school27. An example of how the guidance can be used is the development of a an individualised care plan, ideally initiated by a school nurse with contributions from the parents, the child (whenever possible) and members of the health team involved in the child's care28.
Primary health care professionals also have a role in making recommendations for the emergency treatment of severe asthma attacks and providing information for schools about chronic conditions including asthma26,28.
Using inhalers to deal with asthma symptoms, rather than using preventive strategies, can be the usual pattern of asthma management by children at school and may be encouraged by their parents10,19,29,30.
There is evidence to show that adolescents feel comfortable about using their inhalers in public, especially if they have a number of classmates who also have asthma24. Some children, especially teenagers, choose not to use their inhalers regularly as they believe them not to be as beneficial as health professionals claim and because they are concerned about becoming dependent upon medication24,29,31. It seems that parents are influential in reinforcing the belief that asthma is an acute illness rather than one that requires preventative medication or actions to minimise the likelihood of an acute attack18,20. The health beliefs of parents may also affect how children take their medication. For example, some ethnic minority groups such as South Asians believe that asthma medications are addictive and harmful to children10. A similar finding has been observed in adults with asthma who have expressed concern about over-reliance on medication and who view taking medications as an indicator of illness rather than as a preventative strategy to promote health32. This presents a challenge for those working in primary care, since this view of managing asthma contradicts current guidelines on how best to manage asthma in primary care6.
A number of strategies used by children and adolescents to avoid triggering asthma attacks have been identified. These include homoeopathetic medicines and proprietary preparations such as Vick body rub. Other strategies used by young people include focusing on acting normally whatever the consequences may be, staying calm, concentrating on trying to breathe, and taking time out from an activity until they feel better24.
However, it has been noted that many parents do not adopt preventive strategies, for example they may allow pets to sleep on the child's bed or smoke cigarettes around them even when the child is wheezing22,29.
Communicating about asthma
A key issue in ensuring effective management of asthma in primary care is effective communication between children and adolescents, their parents and health professionals. Often health care professionals talk to the parents instead of the child and this can intimidate the child. Fortunately this is changing in response to a shift in how children are regarded, now that they are encouraged to be active participants in their health status3,33.
Giving child-centred care
Children feel valued when health professionals include them and use language and terms they understand. To get children to accept advice about their asthma, health professionals need to gain their respect by demonstrating adequate clinical performance and communication skills33.
This can be problematic where care is not sufficiently child-centred. For example, the responsibility for managing asthma is increasingly falling to practice nurses who may need support in providing effective child-centred care34. There may also be a problem with the use of self-management plans. These are recommended for children and adolescents on the grounds that they improve the young person's cooperation with treatment35,36. However, care needs to taken when using these plans as there has been criticism over the lack of a child-centred focus in them37.
Working with parents
Parents are faced with a number of tensions in relation to their child's asthma as they help their children cope with everyday life, help them to manage their asthma, and represent their child when they come into contact with health professionals. Some mothers encourage their sons to pass themselves off as "normal" to avoid being labelled and teased by other children. These mothers have been described as an "alert assistant" who identifies, anticipates and negotiates the needs of a person in a number of social situations including managing chronic illness30. In this role, mothers may undertake activities which enable their sons to live with minimal disruption from their chronic illness, e.g. using medication at home instead of at school.
Another strategy employed by parents to avoid their child being labelled or stigmatised is by downplaying the severity of the asthma29. For example, it has been found that daily wheezing and coughing that interfered with activities such as "going out to play" and "running fast" were downplayed and considered as part of "normal" life by the children. Others accepted that living with asthma inevitably meant having good and bad days for experiencing symptoms or limiting their ability to participate in an activity19,20. Parents may consider that managing their child's asthma is disruptive to family life, interfering with sibling relationships, the parents' lifestyle and the home environment. Some parents may also experience "proxy" stigma on behalf of their children29,33.
Being an advocate for the child can create a potential area for conflict when communicating with health professionals. Although they may acknowledge that parents know their own children best, if health professionals feel parents are overstepping the professional boundaries they may equally dismiss the parent's assessment of their child's health38. This may be because of differences in how parents define health, variations in defining the symptoms of asthma, or different terminology from that of health professionals17,18,39.
To overcome these potential areas of conflict, parents may use a number of strategies to ensure their child gets what they perceive to be the right treatment, in the most appropriate place and time. For example, some parents bypass general practitioners and take their children directly to hospital to see a specialist even if this involves a long car journey37. This illustrates how potential conflict can be managed by mothers who do not have the status or authority of medical or nursing training to support their claims of illness in their children.
Other parents have used a number of concepts which together form a process that Dickinson and Dignam describe as "managing it"40. This process involves various steps taken by mothers to monitor their child and the responses to medication, to negotiate a treatment plan and liaise with health professionals as well as to provide emotional support to the child and other family members40.
This process has very clear similarities to the role of nurses in liaising with doctors to secure changes to the medical treatment of patients, and is an interesting observation in the challenge to traditional medical authority that now occurs in health care.
Conclusions and implications for practice
The purpose of this paper has been to explore a number of social issues that affect the everyday lives of children and young people with asthma and those who care for them. Having a better awareness of these issues enables practitioners to deliver more effective care and to support children, young people and their parents in managing asthma more successfully. This may in turn lead to a greater understanding and use of self-management plans and ultimately better health.
Supporting teachers and helping with the development and implementation of a school asthma policy could enhance the currently patchy asthma management25,28.
The role of nurses in managing asthma in primary care is an integral part of this process and their role in patient education is a crucial part of this collaborative relationship28,41. This is an important issue to consider, as educational programmes for selfmanagement of asthma are known to result in improved taking of medication, a feeling of self-control and a reduction in school absenteeism28,42.
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