Youths with asthma and their experiences of self‐management education: A systematic review of qualitative evidence

Abstract Aims To identify and synthesize the available evidence of youths with asthma and their experience of self‐management education. Design Systematic literature review of qualitative studies with meta‐synthesis of findings. Data sources We searched five databases, CINAHL Complete, Embase, MEDLINE (EBSCO) PsycINFO, ASSIA and the Global Index Medicus (formerly the WHOLIS). Initial search in September 2019 and updated in July 2020 and July 2022. Review Methods The systematic review was conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence. Qualitative data were extracted, meta‐summarized and then meta‐synthesized. Results Eighteen studies were identified for inclusion in this review and three themes were identified: The theory and practice gap, contemporary health‐seeking preferences and the psychosocial impacts of living with asthma. Conclusion The needs of youths with asthma are specific and must be measurable against the change in asthma outcomes for this group. They have unmet self‐management educational needs that stakeholders, involved in their care and support, should address. Education and practice policy should focus on youth‐centric approaches. Through meaningful engagement with youths, stakeholders can identify their support needs, requirements and preferences to successfully underpin the theory and practice of self‐management education. Impact This review synthesized evidence of youths with asthma and their experiences of self‐management education, highlighting their specific self‐management information needs. The findings highlight several implications for healthcare professionals in education, practice and research. This age profile is under‐explored and further research into this population would work towards filling the theory and practice gap and highlighting the identified psychosocial issues faced by this group.


| INTRODUC TION AND BACKG ROUND
Figures from the World Health Organization (WHO) estimate that 262 million people are affected by asthma (WHO, 2021). Youths are a subset of the healthy population that are affected by chronic diseases such as asthma. Despite the abundance of educational resources for asthma patients, asthma self-management is unattainable for some youths (Rhee et al., 2009). There are many reasons cited in the literature, including poor adherence to treatment plans including medication management, issues of developmental maturity and the perceived willingness to take responsibility for their actions and the resultant consequences of those actions, that could impact on their ability to maintain asthma control (Kime et al., 2013;Rhee et al., 2009). Bobbit (1961) describes cognitive maturity as the psychological development that entails an awareness and insight into the cause and effect of actions. Global health policy mandates the reduction in the continuum of asthma between morbidity and mortality of this chronic disease (GINA, 2021). However, positioning global asthma selfmanagement goals for youths requires healthcare stakeholders to reflect on the evidence of youth asthma self-management experiences.
In acknowledging their experience of asthma education, only then can all stakeholders, healthcare professionals, parents and youths, recognize and work towards the evolving requirements of youth-specific asthma self-management and negate poor clinical outcomes.
Asthma is a respiratory condition of complex physiological interactions compounded by the unpredictability of asthma symptoms. Characteristics of the disease are distinguishable by symptoms of wheeze, shortness of breath and production of mucus (Quirt et al., 2018). The spectrum of physical symptoms can be mild and managed in accordance with asthma action plans or severe symptoms, requiring hospital attendance with the goal of asthma control.
Unfortunately, asthma deaths are reported, thus highlighting the unpredictable nature of asthma that does not discriminate by age (Global Asthma Network, 2018). Therefore, asthma self-management education is the cornerstone to negate poor youth outcomes. Selfmanagement education provides patients with the tools to make informed choices about their chronic disease diagnosis to enable quality of living (Kime et al., 2013;Bodenheimer et al., 2002). Understanding an asthma diagnosis includes education on the condition, medication information, identifying triggers as well as avoidance strategies and personal commitment, all of which are key to self-management success. However, Kime et al. (2013) argue that the adoption of adult models of self-management education, designed and developed by healthcare practitioners, make assumption of the self-management needs of the recipients rather than expressed needs of young people.
Against this backdrop of personal commitment of asthma selfmanagement concerns arise for the youth cohort with a diagnosis of asthma. Youthhood is a period of discovery, curiosity and development in personal relationships and social interactions, that can impact positively or negatively in decision making about asthma management (Naimi et al., 2009). Furthermore, poor decisions result in consequences as significant as death (Uzuncakmak & Beser, 2017). However, some youths recognize life-threatening events as the precursor to health-seeking behaviours in respect to self-management of their asthma (Fegran et al., 2016). Nonetheless, gaps exist in asthma education for youths, particularly those moving into adulthood (Rhee et al., 2009;Strof et al., 2012;Uzuncakmak & Beser, 2017). Many are ill prepared to independently manage their asthma (Kew et al., 2017;Uzuncakmak & Beser, 2017;Sleath et al., 2016). Their lack of asthma knowledge and the lack of empathy from healthcare providers have been indicated in adding to the anxiety of taking responsibility in the management of their asthma (Kew et al., 2017).
Studies of effectiveness of self-management asthma education for youths, has demonstrated positive results, including improved symptom management and improvement in quality of life (Kew et al., 2017). Specifically, the Cochrane review provides evidence of peer and lay-led asthma education with a focus on the empowerment of youths in their choices around their asthma health (Kew et al., 2017). Empowerment of youths through asthma selfmanagement education shifts the dynamic from didactic education to an inclusive, respectful peer partnership to attain asthma goals (Kew et al., 2017). However, there is lack of qualitative research specifically addressing youths' experiences of self-management and asthma education (McTague et al., 2019).
The aim of this systematic review is to identify the available evidence, appraise and synthesize the findings from qualitative research that relates to youths and their experience of self-management education. In addition, the synthesis of evidence from the youths' viewpoint will provide a foundation for future development of asthma educational interventions for healthcare providers seeking to meet the expressed needs of this cohort. Adopting the Joanna Briggs methodology for carrying out systematic reviews we aim to highlight implications for practice and policy, which will be informed by the quality of the included studies and the contexts in which the studies have been conducted.

| Aims
This systematic review aimed to synthesize the best available qualitative evidence on youths with asthma and their experiences of selfmanagement education. The objectives were to: (i) Explore how youths, with a diagnosis of asthma, experience asthma self-management education.
(ii) Highlight specific issues related to the self-management of asthma for youths with this chronic condition.
(iii) Present recommendations for research, education and the clinical context

| Design
The systematic review was conducted using the meta-aggregation approach in accordance with the JBI methodology for systematic reviews of qualitative evidence (Lockwood et al., 2020). It followed the methods established in the a priori protocol registered with PROSPERO CDR42019138083 (McTague et al., 2019). Papers were included or excluded based on the criteria set out below. The PRISMA 2020 statement reporting guidelines were used in preparing this manuscript (Appendix S1).

Participants
This review includes studies involving youths with a diagnosis of asthma who had experienced self-management education. For this review, we adopted the UN definition of 'youth' "as those persons between the ages of 15 and 24 years, without prejudice to other definitions by Member States" (United Nations, 2013). If the age range of the studies was unclear or included those outside our age criteria, we excluded the study if the mean age was not between 15 and 24 years (Kew et al., 2017). There was no restriction on year of publication. Studies were also excluded if all participants were aged under 15 years or if insufficient data were provided to establish the mean age of participants. Where studies explored the experiences of parents and/or healthcare professionals as well as those of the youths, we extracted data solely related to youths' experiences of self-management education.

Phenomenon of interest
Self-management education as experienced by youths with a diagnosis of asthma.

Context
Studies exploring youths with asthma experiences of selfmanagement education in primary care, hospital and community settings (excluding schools) which include general practice, nurseled clinics, public health services and all hospital settings.

Types of studies
Studies that focused on qualitative data, including international studies published in English were considered for inclusion in this review. According to Clarke (2016), there is a need for systematic reviews. In line with our published protocol (McTague et al., 2019) and given the research aims, it was decided that qualitative data would provide the rich data on how youths with asthma experience selfmanagement education related to their condition. No date limit was set for the database searches.

| Search strategy
The search strategy involved a comprehensive three-phase process: (i) a search of academic databases for published studies, (ii) a search of sources of grey literature for unpublished studies and (iii) a hand search of reference lists for studies unidentified in the other two searches. Initial scoping searches using the database thesauri were run in CINAHL Complete, Embase, MEDLINE (EBSCO), ASSIA and PsycINFO, these searches provided a list of focused index terms and a list of synonyms. Search terms used included asthma, selfmanagement, education and qualitative research. Further Analysis of the keywords contained in the title and abstract, and of the index terms used to describe the articles retrieved during the search was used to create a comprehensive list of keywords. Six databases were selected for searching, CINAHL Complete (1937-), Embase No concept was created for 'youths' as best practice indicates that population by age is filtered at the title and abstract screening phase under include/exclude criteria. The searches were initially conducted in September 2019, updated in July 2020 and July 2022 (see Appendix S2).

| Search outcomes
Searches of academic databases and grey literature were carried out by the Subject Librarian involved in the review. A hand search of reference lists of retrieved papers for inclusion was completed by two of the reviewers. Figure 1 contains a diagrammatic representation of the search strategy that is based on PRISMA 2020 (Page et al., 2021).
The results were exported from each database and uploaded into Endnote X9 (Clarivate Analytics) and duplicates were removed (Bramer et al., 2016). Titles and abstracts were screened using the Covidence systematic review software (Veritas Health Innovation, 2021) by two independent reviewers for assessment against the inclusion criteria. Potentially relevant studies were retrieved for full screening. All studies were screened to full-text review stage and then narrowed to the English language. Disagreements arising between the reviewers were resolved through discussion or with a third reviewer.  Table 1). Two independent reviewers assessed qualitative papers selected for retrieval for methodological validity prior to inclusion in the review. Studies were excluded on the basis of not meeting the predefined eligibility criteria set out above.
If the age of participants was not stated or if the mean age was not clear or could not be calculated, studies were excluded. Reviewers were blinded to each other's assessments; only after initial appraisal of each article had been completed by both reviewers could assessments be compared. Disagreements arising were resolved through discussion or with a third reviewer and the remaining studies are the final number included in this systematic review. The results for each study indicated moderate to high scores with 17 papers receiving a score of seven or more out of 10. Half of the studies (50%) had a statement locating the researcher culturally or theoretically and only 33% indicated the influence of the researcher on the research. No study received a low score indicating the need to exclude from the review.

| Data abstraction and synthesis
Qualitative data were extracted by two independent reviewers guided by a recognized framework (Lockwood et al., 2020).
This included specific details about the authors, year and country, phenomena of interest, participants, study methods, methodology and the main results of each study. The findings were then extracted using verbatim and non-verbatim statements and were reviewed and pooled using the meta-aggregation approach (Lockwood et al., 2020;Munn et al., 2014). A set of statements was generated to represent an aggregation of the findings. This involved collecting the findings and categorizing those findings based on a similarity in meaning.
Following the principles of meta-aggregation, findings were synthesized into themes. An example of the meta-aggregation process is outlined in Figure 2.

| Study characteristics
This review retrieved 9857 articles in total, following removal of duplicates, 5851 articles were screened on title and abstract by two reviewers. Following initial screening, 171 full-text articles were screened in depth for suitability, of these, 153 were deemed F I G U R E 1 PRISMA flow diagram (Page et al., 2021) Records identified from: Databases (n = 9410) MEDLINE (n = 2368) Embase: (n = 3317) CINAHL (n = 1694) ))) Web of Science (  (n = 1) and the Netherlands (n = 1). All the studies used qualitative research methods that explored youths with asthma and their experience of self-management education. The methods used to collect data include individual interviews, focus groups, participant observation and participatory workshop. A list of the papers (n = 18) and their key characteristics is contained in Table 2. As noted above, we extracted data solely related to youths' experiences of self-management education.
During the meta-aggregation process, three main themes emerged: theory and practice gap, contemporary health seeking and psychosocial impacts of living with asthma. In addition, eight descriptive subthemes provide depth of youths' experience of asthma self-management education. The following sections explores the emergent themes and subthemes (see Table 3).

| Theory and practice gap
Youths' experience of asthma self-management education is influenced by a wide range of sources, formal and informal, with specific asthma self-management foci. From the youth's perspective, the practice of everyday living with asthma is problematic and does not always align to the theory of self-management. Noteworthy too are youths accounts of experiential learning derived out of their reflection of living with asthma. Note: Y = yes, indicates a clear statement appears in the paper which directly answers the question; N = no, indicates the question has been directly answered in the negative in the paper; U = unclear, indicates there is no clear statement in the paper that answers the question or there is ambiguous information presented in the paper.Criteria for the critical appraisal of qualitative evidence:

Buston and
Wood (2000) , United Kingdom Qualitative description Young people identified the most useful components of a pre-consultation guide for asthma to be the peer written sections, including example questions to ask in a consultation; and prompts for reflection on the impact asthma had on everyday life.
There are key aspects of the pre-consultation guide such as peer written components and guidance regarding self-assessment of symptoms that could be applicable to interventions for young people with other longterm conditions Ödling et al. (2020) , Sweden Explore young adults with severe asthma experiences of transition from paediatric to adult healthcare Adolescents (n = 16) aged

22-24 years Seven males and nine females
Semi-structured interviews Thematic analysis Qualitative description Responsibility for asthma management lay with them, the ties had been severed with the security, supports and familiarity of the paediatric setting and this was daunting. They felt joint preparation for adult healthcare if allowed would take time but would be beneficial. They were less supported in the adult healthcare setting and the felt that their asthma received insufficient support and interactions were healthcare providers were impersonal Peters et al. (2017) , Australia Health providers have access to adolescent medical information.
Adolescents require a different approach than children and older adults Rhee et al. (2006) , USA Explore the asthma learning needs and Internet use and preferences of adolescents with asthma Adolescents with asthma (n They agreed there was a need for education on asthma and its management. Receptive to the possibility of using the Internet to obtain information (although none in the older groups had previously used the Internet to locate information on asthma).
A potential asthma website should be entertaining. Were concerned about trustworthiness and legitimacy of the source and preferred those sites offered by health professionals affiliated with a reputable healthcare institution (e.g. university health system).
Websites should be teen-friendly-use of entertaining features such as animation, cartoon characters, videos and lyrics. Format needs to stimulate and sustain adolescents' interest.
Interested in the possibility of using websites for communicating with healthcare providers and receiving immediate feedback of focus group data The majority of adolescents and parents agreed that mASMAA was an attractive and convenient option to facilitate asthma self-management, having acknowledged the multiple benefits in promoting a sense of control, awareness of symptoms/triggers, treatment adherence and adolescent-parent partnerships. Some participants even noted an improved asthma condition during the study period. However, quantification of the positive effects of mASMAA and the long-term sustainability of the system and its impact on asthma outcomes remains to be determined Rydström et al. (2005) , Sweden Qualitative description Participants identified personal challenges affecting adherence -this included taking responsibility for their self-management and their lack of preparedness, their lack of understand about their asthma and their desire to be a young person like their peers. This led to forgetting to take medication and issues around embarrassment about medication use. Additionally, the financial cost of medication needs to be considered for young people and extending the use of rescue medication in the community setting for emergency situations.
aStudies where mean age was not reported or was below 15 years; authors report all findings but did not use them in the meta-aggregation. bStudies where other participant types are included, only findings for youths presented in this review. cStudies where individual participant ages were reported, and researchers calculated the mean age.

TA B L E 2 (Continued)
before I go to her house to keep it in my pocket (Gibson-Scipio et al., 2015, p. e58)

| Illness management and medication compliance
The emphasis on medication adherence, as the pillar of asthma selfmanagement, is replete in the studies included, however, arising out of the youth's illustrations an identifiable asthma medication theorypractice gap exists. Youth's experiences focus on the task to "take medication" rather than possessing a sound knowledge base of 'the what, why and when' of self-administration of their asthma medication, which is the corner stone of self-management. Youths often experience a feeling of being "divorced" from healthcare consultations and often feel overshadowed by parents or caregivers.
Mum talks and I sit there and listen, but then I don't think the doctor fully knows how it's been for me, but mum always says I don't talk, but I would talk if I was given the chance to talk… I don't think they fully know cause when I come out, I think I would have said this and I would have said that but I didn't have the chance to (Holley et al., 2018, p. 949) In supporting effective communication by youths with HCPs, there is evidence that pre-consultation aids and tools for communication is something that the youths felt would be useful to enable them to seek out information that was youth-centred and specific to their needs.
When I go, I don't think about questions that I want to ask before I go. I always kind of think that it's always about the medication rather than how I feel, so I think if I read through some of these questions I'd be able to think about what to say…If I read this I'd get to think about more what I wanted to get from the asthma nurse rather than just inhalers (Milnes et al., 2013, p. 93) 3.2.4 | Barriers and enablers of asthma knowledge and self-management

| Contemporary health seeking
The buy-in for contemporary health seeking as evidenced from the findings reveal a catalogue of requirements from accessibility, attractiveness to interactivity with options to adapt personal preferences. Youths identified the acceptability of using their phone as one said, "I always have my phone, my phone is-this is my life" (Rhee, Allen, et al., 2014;Rhee, Fairbanks, et al., 2014, p. 67). Youths describe a willingness for tracking technology that may enable a growth in their confidence and autonomy in their disease management.

| Accessibility
Independent asthma self-management is the goal of all stakeholders; however, the transition should be incremental to ensure confidence building in youths' capabilities to recognize and reflect on self-management of their asthma. Technology can provide the accessibility of anytime anywhere support for youths and facilitate growth in their confidence and their role in disease self-management.
I feel like it could help you manage your asthma because it like tells you when like you're having flare-ups and what time of day and then that can help you find out why because you can reflect and think back what you were doing then or what you were exposed to (Rhee, Allen, et al., 2014;Rhee, Fairbanks, et al., 2014, p. 68)

| Attractiveness, interactivity and preferences
The issue of accessibility alone may not be sufficient for youths.
Youths indicated they would like bespoke technological capabilities that could provide "like a digital asthma action plan that provides management instructions based on current, reported symptoms" (Ramsey et al., 2019, p. 968). They also suggested that technology could be used by their medial team to contact them about their condition.

It would be great if [the medical team] could reach out
if they see something abnormal (Ramsey et al., 2019, p. 969) The attractiveness, interactivity and preferential nuance of technology that appeals were proposed by youths.
Reading facts, and triggers, and things like that, would be cool. Even just simple things of how much is too much of your puffer? (Coombs et al., 2018, p.183) Noteworthy too are youth's awareness and insight into informed decision making about trusted resources in e-health technology.

| Psychosocial impacts of living with asthma and support networks
The impact of living with asthma has affected youths, emotionally, psychologically and socially, at an important juncture in their growth and development. was, it kind of hit me in the head…oh I need to take these pills (Zaeh et al., 2021, p. 560).
The psychological impacts and unpredictable nature of their asthma, a sense of living in fear, adds to their stress and anxiety.
Furthermore, the social constraints of asthma are problematic for youths. Testing their asthma "limits" in social situations was reported in one study (Rydström et al., 2005). Moreover, youths often struggle with other people's perception and lack of understanding of the disease, which for youths was perceived as shaming and embarrassing with implicit and explicit accounts, evident in many of the studies.
If you do have to [take medication] in public or in an event or something like that it can be a bit awkward at first because it is just not something that people typically see (Zaeh et al., 2021, p. 560) 3.

| DISCUSS ION
Asthma is a chronic and potentially life-threatening respiratory condition, with youths being identified as an at-risk group (Strof et al., 2012).
The population of interest, youths, young people and adolescents, has been discussed for over two decades in the literature reviewed in this systematic review. However, there is still a shortfall in addressing asthma self-management needs and countries reporting qualitative research with this group. Asthma and allergies are on the increase in this population and therefore urgent action is needed to support youths achieve optimal health (Cevhertas et al., 2020).
The viewpoint of youths is key to understanding and improving their experience of asthma self-management education. According to the youths in the studies reviewed, there is a significant gap in self-management education that falls short of the holistic perspective of youths with an asthma diagnosis. In fact, we propose that some enablers of asthma self-management education are self-taught.
In living their lives to the full, the evidence provided by youths in this review purports a specific focus on medication adherence and management (Buston & Wood, 2000;Koster et al., 2015). The gap between the theory of self-management and practice of living with asthma has widened for youths. It is unclear if this gap has grown or it is rate of growth has accelerated from childhood through to youthhood (Coombs et al., 2018). Indeed, a recent systematic review on adherence to inhaled corticosteroids for asthma identified the continued fallibilities in successfully understanding and supporting young adults with the disease (Murphy et al., 2021). Notably, in the review, young people are referred to as outliers in attending primary care settings for their asthma care, and where medication nonadherence is more evident (Murphy et al., 2021).
In addition, it is difficult to determine if an opportunity to stop, pause and reflect with youths on their asthma self-management, when moving and transitioning to independent self-care, is considered to bridge this theory and practice gap (Ödling et al., 2020).
The lack of preparedness for this transition was explicit and a chal- The results of the review also highlight potential solutions in the delivery of asthma self-management education. The report of positive experiences is presented by youths in respect of contemporary health-seeking behaviours, notably the employment of technology in asthma self-management. Technology is a feature of daily life in developed countries (Rhee, Allen, et al., 2014;Rhee, Fairbanks, et al., 2014) and is an acceptable conduit that youths in these studies show a willingness to embrace as part of their self-management education needs. Furthermore, the construct of technological features was very important. Through developer engagement and interactions with youths, the buds of youth-centric perspectives provide a glimpse into the possibilities of contemporary asthma selfmanagement education (Coombs et al., 2018;Hui et al., 2021;Peters et al., 2017;Ramsey et al., 2019;Rhee, Allen, et al., 2014;Rhee, Fairbanks, et al., 2014). Findings from this review suggest that optimizing the scope and reach of technology, for youths with asthma, has the potential to engage youths in asthma self-management education, asthma monitoring and asthma support that is flexible to their needs and requirements.
Finally, one of the overwhelming findings of this review is the lack of a considered psychosocial and self-care component of asthma self-management education for youths. Youths describe the many challenges they face daily (Cheng et al., 2022;Peters et al., 2017). Their friends and peers are living a life, restrictionfree, compared with the youths unrelenting consciousness, of living with asthma that they must acknowledge (Gibson-Scipio et al., 2015). This awareness is intertwined with the strive for independence and serves to magnify the burden of asthma. This alertness brings to the fore the emotional and psychosocial impact of asthma that perhaps as their asthma child-self they had little insight too (Jonsson et al., 2017;Milnes et al., 2013;Zaeh et al., 2021). Furthermore, the lack of understanding by lay people, of the restrictions that asthma can place on them, was evident and a source of frustration for youths. The life-threatening component of the disease is misunderstood and the normalizing of abnormal symptoms, is often trivialized (Jonsson et al., 2017). Furthermore, there was evidence from the youths that the structure of selfmanagement education addressed the physiological requirements of asthma but from the studies included in this review the evidence to support the psychosocial components of self-management education are lacking. Priority for the psychosocial and self-care components of asthma self-management education is recommended as a finding of this review.

| Limitations
This is the first review to aggregate the evidence to better understand the perspectives of youths and their experience of asthma self-management education. The illustrations provided in this systematic review are rich and highlight several areas for future development of asthma self-management education in terms of design, structure and delivery in the context of the community and healthcare setting. Furthermore, much of the research was related to younger teens so specific research on this youth cohort is warranted. The main limitation of this systematic review related to the identification of studies within the inclusion criteria, age of youths 15-24 years. Additionally, the transitional profile of this cohort suggests that youths' enrolment into studies maybe limited by youth's availability as they fall between the paediatric and adult healthcare models.

| CON CLUS ION
This study aimed to synthesize the evidence on youths with asthma and their experience of self-management education. The findings of the review reveal that studies exploring their perceptions and experience of asthma self-management are limited. The known risks associated with this cohort, who have a diagnosis of asthma, points to a requirement for further research concentrated on this population.
Furthermore, the development of holistic, youth-centric asthma selfmanagement education is needed. We encourage others to examine the potential benefits that a holistic approach to youth's asthma selfmanagement education could provide, and thereby build an evidence base for healthcare practitioners to improve youth asthma outcomes.
This review has highlighted the gaps in self-management education for youths and identified potential methods of delivering the same, to include psychosocial and emotional components so finally, we recommend that the wilderness, that lies between childhood asthma diagnosis and youthhood, needs to be cultivated with appropriate ongoing support and asthma education bespoke and inclusive for all.

AUTH O R CO NTR I B UTI O N S
All authors have agreed on the final version and meet at least one of the following criteria (recommended by the ICMJE [http://www. icmje.org/recom menda tions/]): • substantial contributions to conception and design, acquisition of data or analysis and interpretation of data; • drafting the article or revising it critically for important intellectual content.

ACK N OWLED G EM ENT
Open access funding provided by IReL.

CO N FLI C T O F I NTE R E S T
The authors confirm there is no conflicts of interest.

PEER R E V I E W
The peer review history for this article is available at https://publo ns.com/publo n/10.1111/jan.15459.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request.