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Abstract
Asthma is the most common chronic condition of childhood. In this review, we discuss an overview of strategies to empower children and young people with asthma. The key aspects of empowerment are to enable shared decision making and self-management, and help children minimise the impact of asthma on their life. The evidence behind these strategies is either sparse or heterogenous, and it is difficult to identify which interventions are most likely to improve clinical outcomes. Wider determinants of health, in high-resource and low-resource settings, can be disempowering for children with asthma. New approaches to technology could help empower young people with asthma and other chronic health conditions.
- adolescent health
- epidemiology
- general paediatrics
- health service
- respiratory
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What is already known?
Chronic illness affects children’s health, and health-related quality of life.
Empowering people with chronic illness can be beneficial.
Empowering people is a focus of the National Health Service long-term plan.
What this study adds?
We propose a framework for what empowerment entails: shared decisions, self-management and living a normal life.
We discuss how the evidence base behind strategies for how to empower children with asthma is currently lacking.
We share the views of a young person, describing how asthma affected her childhood.
Introduction
Various frameworks have attempted to describe what ‘empowerment’ means for people with chronic conditions.1 2 The key elements are to enable people to contribute to decisions about their health, self-manage as much as possible and tailor their condition around their life. In this paper, we provide an overview of strategies that empower children and young people (CYP) with asthma. Where possible, we use evidence from systematic reviews of randomised controlled trials (RCTs) in CYP with asthma. The process of development through childhood carries specific problems for different age groups. We generally refer to CYP as being people at school (ie, aged 6–16 years), although some discussions will be relevant to young adults. We do not address the process of how to run transition clinics or develop services that move CYP from paediatric to adult services, as a detailed description of this important problem is outside the remit of this paper.
Most CYP can achieve asthma control with inhaled corticosteroids (ICS), aeroirritant avoidance and healthy lifestyle. Guidelines to date recommend that CYP use metered dose inhaler, via spacer, to deliver ICS and add long-acting beta-agonist (LABA) or oral antileukotriene agents such as montelukast if needed.3 The vast majority of CYP referred to tertiary services get better with simple changes, rather than escalation of medication for severe treatment-resistant asthma.4 5 Newer approaches are to use combination inhalers containing ICS and long-acting and fast-acting bronchodilator as both maintenance and reliever therapy,6 or to use ultra-long-acting ICS (fluticasone furoate) and LABA (vilanterol) in a once-daily preparation.7 Despite these, some CYP will step up to injectable biologic therapies, which can be selected in a targeted and personalised way.8 9
In box 1, we present the views of a young person, who recently transitioned to adult services. We asked “can you tell us what you want from your life, how asthma gets in the way, and things which happen in clinic which make you feel in control, or not in control”.
An account from a young person with asthma, who transitioned to adult services 18 months ago
As a child, asthma was always a big problem in mine and my families lives. It did prevent me from a few opportunities in my life such as school trips, and a few days out with friends. I wasn’t allowed to go anywhere on my own, because of the risk of me having an attack and nobody being around to help me. I also couldn’t take part in sports such as football which I have always loved. I always felt like I was the decision maker when it came to my treatment and my health when under Alder Hey. I felt that the respiratory team were always open and honest about the treatment and support they could provide me with. I am grateful for the support they provided me with, especially with school. The respiratory team visited my school to ensure that there were trained staff to deal with the condition. This gave both myself and my parents peace of mind when I was attending school unwell. I was very proud to have passed all of my exams and attend my high school prom, something that my family and I never thought I would be able to do.
Throughout my childhood I felt as though I was very reliant on other people to get me to school, and to places where I was meeting friends, as my parents didn’t like me getting the bus on my own. This made me feel like I had no freedom, I had to ask to be taken somewhere all the time. My asthma was definitely the main focus of my childhood. It was also the main focus of my parents and my grandparents for the most part. If we were to be doing something they always had to think about my asthma and could it cause an attack. Things like going on a day out with my cousins and my grandparents, there would always be things my cousins could do that I couldn’t take part in, in case I had an attack. If I was to be staying over at anybody’s house, my mum would have to have a chat with them first to make sure they knew what to do if I did have an attack and how to spot my signs.
I believe that most of my asthmatic episodes were due to the air pollution in and around Runcorn. I moved to Cornwall in 2018, because the air is so much cleaner and as a result of this I haven’t had an admission to hospital since. I am still taking large amounts of drugs to control the asthma but feel that I am now more in control of the condition rather than it controlling me. I am now able to play football for a local Sunday league team and I went on an over seas trip to Canada with my college in February 2019.
This account reflects difficulties that CYP with asthma have, and concerns of their parents. Our goals as healthcare professionals are to keep CYP with asthma safe and reduce the risk of complications. We also need to focus on enabling CYP to make the most of their opportunities and live without fear. Adolescence is a time to develop independence and, as highlighted in this account, asthma can impede this.
Making shared decisions about healthcare
Paternalistic models of healthcare, in which clinicians make decisions on behalf of patients, are now considered old-fashioned. CYP, and their parents, should be involved in making decisions about their health. The General Medical Council requires that doctors work in partnership with patients, by listening to their preferences, giving information in a meaningful way and respecting their right to reach decisions.10
Tools to enable shared decisions in childhood asthma have been evaluated in two RCTs, both in primary care. One study failed to recruit sufficient participants.11 In the other study, 60 families were randomised to use a shared decision-making portal or usual care.12 For the primary outcome (acceptability of asthma care at 6 months), there was no difference between groups, but families using the portal reported improvements in rates of asthma attacks and school absenteeism. In prospective cohort studies, also in primary care, use of a toolkit to aid shared decisions was associated with improved asthma control and reduced asthma attacks.13 14
The key to making shared decisions effectively is to acknowledge viewpoints of the clinician and the person with the illness.15 In paternalistic models of care, the clinician decides on a treatment choice after delivering medical information to a patient; in a shared approach the clinician and person with an illness make the choice together after a two-way exchange of both medical and personal information.16 This should involve delivery of understandable, balanced, evidence-based information, support for the person making decisions about their healthcare, and a system for recording, communicating and implementing preferences.17 Figure 1 outlines an approach to making shared decisions, in which information from healthcare professionals and people with chronic illnesses can be used to reach a mutually acceptable plan.
An approach to making shared healthcare decisions with young people.
Healthcare professionals, parents and CYP may be uncomfortable with the communication style required to make shared decisions—indeed, some families may prefer the clinician to make all the decisions. Visual aids, role-playing and actively involving CYP in discussions can be useful.18 It is important to acknowledge that people may have sought health information from the internet and social media.19 This should be seen as a positive aspect of a patient starting taking control of their health, and healthcare professionals should not feel undermined, nor appear dismissive. It is important to discuss the validity of information on websites and social media, as the quality of such forums is variable.20
Guidelines and flow charts can enable evidence-based practice, by providing a framework for treatment choices. In most situations, however, decision-making is nuanced and complex, as is interpretation of clinical research. This is reflected in differences between guidelines for CYP with asthma, which vary in diagnostic and therapeutic recommendations.21 Given that CYP with asthma respond to treatment in different ways,22 23 they should be offered personalised therapeutic options whenever possible.
Being able to self-manage
The aim of asthma management in CYP is to prevent symptoms and asthma attacks, so they can do things they would like. This should be done in a way that asthma becomes an additional consideration within their daily lives rather than the central focus of how the family functions. Supported self-management, which empowers people with asthma, reduces emergency healthcare utilisation, and improves health-related quality of life (HRQoL).24
Using medication properly is a fundamental aspect of self-management. A systematic review including six large cohort studies found that better adherence to medication reduced the risk of asthma attacks requiring unscheduled visits to the emergency department (ED) or hospitalisation.25 Reviews of observational studies report that inhaler technique is suboptimal, in patients26 27 and healthcare professionals.28
A Cochrane review identified 39 trials, of which 18 were conducted in CYP, studying the effects of different types of technique for improving adherence to ICS.29 These included educational approaches (individual and group sessions, motivational interviewing, family‐based and team-work interventions, nurse‐led psychoeducation, telephone interventions and interactive voice recognition systems), electronic tracker/reminder systems, simplified drug regimes and directly observed therapy in schools. These approaches improve adherence (educational approaches and electronic inhaler tracker devices by around 20%, simplified drug regimes by 4%), but did not improve risk of asthma attacks, overall control or HRQoL.
Another important part of enabling self-care is to give families, in a written asthma action plan (AAP), a summary of treatment for when a child is well, and less well, and what to do during an asthma attack. Although AAPs should enable effective self-management, hence their inclusion in guidelines,3 30 the evidence around them is inconsistent. Systematic reviews and RCTs consistently show that AAPs do not affect health outcomes,31 32 but an overview of evidence around supported self-management concluded that AAPs should be a core component of the management of asthma.24 Research is needed to identify how to develop the right action AAP for individual CYP. A meta-ethnography of qualitative research found several studies examining views around AAPs from parents and carers of children with asthma, but few from CYP themselves.33 Another study found that readability of AAPs was variable,34 and an RCT by the same group found that a simpler plan developed for people with low literacy levels was more effective.35 A systematic review identified four RCTs comparing paper and smartphone AAPs.36 One of these, a small pilot study with 34 participants, included only adolescents.37 Although there was no difference in clinical outcomes, adolescents universally preferred using smartphone-based action plans. To be useful, AAPs must be given alongside robust education, and tailored to individual CYP. There are uncertainties around what to include in an AAP, such as whether or not to increase the dose of ICS at times of worsening control.
There is interest in whether school-based educational interventions for CYP with asthma might improve self-management. A Cochrane mixed-methods review included 55 studies, of which 33 were RCTs.38 The review found that school-based interventions for promoting self-management in CYP with asthma were successful in reducing unscheduled ED attendance or hospitalisation. The authors highlight the need for ongoing work but suggested that developing school-based interventions using a theoretical framework, engaging parents in the process and conducting sessions outside of the children’s free time may help successful implementation. Another promising clinic strategy, tested in small pilot projects, is peer-group shared medical appointments, in which a group of CYP would be seen together.39–41
Helping children and young people tailor their asthma around their life
All CYP have the right to feel happy and secure, live their best life and strive for their ambitions. It is incumbent on health professionals to help CYP make the most of their childhood. This involves being flexible, empathetic, compassionate and responsive to the needs of individual CYP.
In an international survey of 943 CYP with asthma, 490 (52%) felt that asthma made them ‘different’, including feeling unhealthy, like they were missing out, sad and unable to do exercise.42 In a qualitative study, 10 CYP were interviewed about how asthma affects their daily life.43 They described how they had developed coping strategies so they had ‘learnt to live’ with asthma, did not want asthma to be the focus of their daily life, wanted people to acknowledge that asthma might hold them back without being overly sympathetic and felt that asthma limited their ability to do exercise. This reflects the views of the young person in box 1. More research is needed to evaluate the impact of asthma on school attendance. Studies to date show high levels of absenteeism,44 and that this may be associated with asthma control,45 46 parental asthma47 and environmental factors such as pollution.48
Our group developed and piloted a community-based exercise and education programme for CYP with asthma, in response to children telling us that they found asthma to be an isolating condition because they were unable to play during break times at school, missed school trips and were often excluded from physical activity lessons or social activities with their friends. The Set goals, Commit, Optimise therapy, Reinforce and Enable model was developed initially as a way of helping CYP with asthma become fit and healthy. When we evaluated the service, we found that the key benefit described by CYP was the opportunity to make friends, which improved their self-esteem, and this seemed to be reflected in improved asthma control.41 49
Socioeconomic determinants of health
Development of asthma,50 and subsequent asthma control,51 are strongly linked to many prenatal and postnatal environmental determinants including antenatal maternal stress52 and smoking,53 postnatal secondhand smoke exposure,54 poor quality housing,55 obesity,56 food poverty57 58 and air pollution.59–61
The aim of empowering young people with asthma is to give them control over their health and their lives. Socioeconomic deprivation is disempowering because it limits the lifestyle choices that people are able to make. Families living in poverty may have reduced access to healthy foods and resources to enable physical exercise. When promoting healthy lifestyles, professionals should be sensitive to the barriers that limit peoples’ choices when they live in poverty. At a wider level, national and regional policies should be developed with the well-being of CYP as a central theme. Asthma outcomes can be amenable to upstream policy changes, as was seen when exacerbation rates were reduced by public smoking bans,62 63 and community-based projects to educate families about good asthma care, including housing advice.64
Barriers to empowering children in low-income and middle-income countries
Low-income and middle-income countries (LMICs) face an increasing burden of asthma,65 66 and empowering CYP in the face of this could represent an important step towards improving outcomes. However, LMICs face many challenges, some of which do not necessarily affect more high-income countries.
One barrier is the availability, cost and accessibility of healthcare, compounded by suboptimal medical insurance coverage. Furthermore, young people’s understanding of asthma, adherence to medications and appropriate use of healthcare resources are impeded by low levels of education and literacy, and strong negative perceptions and stigma associated with the disease.67 Another problem, around which little research has been conducted, is the nature of the doctor-patient relationship in paediatrics in LMICs. Culturally, it is likely that in many settings this is still somewhat patriarchal and this may impede the process of making shared decisions.
How innovation might empower children and young people with asthma
We have discussed problems with getting the fundamental aspects of asthma management right—both at clinic and at home. Current technological advances have the potential to improve the lives of CYP with chronic conditions such as asthma. Health services have been traditionally slow to develop and adopt new technology, but recent investment and development of innovation networks across the UK should improve this.68 A recent systematic review and meta-analysis of studies evaluating electronic health interventions (including mobile technology and telemedicine) found small but statistically significant improvements in adherence in 15 studies (1 of social media, 1 of electronic health records, 6 of telehealth and 7 of mobile health interventions).69 Further work should identify which technological approaches improve clinical outcomes. Current technologies in development include wearable technology,70 telehealth71 and how big data might help identify population-level trends in asthma severity72 and individual risks to enable self-management.73 Many innovations in medicine fall by the wayside because they are not addressing a tangible problem of relevance to patients, or because they use a solution which in itself is burdensome or prohibitively expensive. Innovations in asthma should be co-developed with children and families to ensure they are useful and relevant.
Summary
Health professionals should endeavour to empower CYP with asthma. This involves enabling them to make shared decisions, be as independent as possible and minimise the impact asthma has on their lives. Current strategies have not always been developed using a robust theoretical framework, and there is need for evidence from well-designed, large, RCTs. Further research should focus on issues around school in children with asthma, as this may identify areas in which care could be improved, and strategies to enable children to lead a normal life as possible. Approaches to empowerment should also focus on socioeconomic determinants of health, low-resource settings and development of appropriate technologies.
References
Footnotes
Twitter @just_TUX
Contributors IPS is the guarantor and drafted the manuscript. All authors were involved in conceiving of the need for this review article. All authors reviewed dates of final manuscript and contributed to the intellectual property contained within it.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests CG has received fees from Flynn Pharma and Thermo Fisher Scientific for delivering lectures. AL has received fees from AbbVie Pharmaceuticals for delivering lectures. None of these is directly relevant to this paper.
Patient consent for publication Obtained.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data sharing not applicable as no datasets generated and/or analysed for this study. This is a review article with no primary data.