Asthma is a chronic respiratory condition characterized by episodes of physiological airway narrowing resulting in symptoms of wheeze, breathlessness and mucus production.1 The trajectory of symptoms varies from mild, moderate to severe episodes that can be fatal. The effects of this chronic disease are known to impact on patients both physically, in restriction of activities, and psychosocially, in terms of quality of life.2 According to the World Health Organization (WHO), 235 million people suffer from asthma, with 383,000 deaths occurring in 2015.3 Moreover, youths with a diagnosis of asthma represent the highest percentage (10-11%) across all age groups.4 Globally, the focus is on minimizing the morbidity and mortality of asthma, recognizing the importance of providing asthma education to promote self-management that may empower people with a diagnosis of asthma.5 Youths are identified as an at-risk cohort with specific education needs, as this group has a higher risk of life-threatening events.6
Self-management of a chronic illness such as asthma entails education about the condition, symptom recognition and management, including pharmacological interventions to negate the incidence of asthma exacerbations.7 However, to effectively engage in self-management of a condition such as asthma, personal commitment and awareness of the consequence of poor adherence is required.7 Self-management education supports patients with chronic conditions to live their lives to the full.8 Achieving cognitive maturity entails psychological development, where awareness and understanding of the cause and effect of actions are essential.9 It is essential for youths to achieve self-management and successful disease associated outcomes.6 The World Health Organization10 uses the age parameters of 10 to 24 years to define adolescents, and the United Nations (UN) defines “youth” as those between the ages of 15 and 24 years.11 This is the age at which cognitive maturity should be attained.
The overarching theme emerging from the literature on self-management and youths encompasses issues around developmental maturity, risk taking and the young person's desire to be perceived as “normal”.12 Internationally, the management of young adults with asthma is a contentious issue.10 Adolescence and young adulthood is a period of significant transition in cognition and psychosocial development. This transition period occurs for youth on the cusp of “spectatorship” in their disease management, where parents are often concerned about handing over the responsibility of self-management whereas health professionals are encouraging empowerment.13
Decision-making skills in respect of disease management are tested and influenced through self-regulation and experiences about asthma management plans.6 A Cochrane review identified a range of decision-making tools for people with asthma, indicating that self-management is linked to improved clinical outcomes and quality of life, educating and empowering patients to become actively involved in their own health management.14 Studies, although limited in terms of those on adolescents and young adults, have examined barriers to self-management of asthma.15 These include restriction in participating in sporting activities because of the diagnosis of asthma15 and concerns about the effectiveness and long-term effects of medication, particularly in respect of inhaled corticosteroids.15,16 Self-management education could help a young person address these barriers. In addition, mental wellbeing and the stresses of living with a chronic disease have been reported as a concern for adolescents and young adults, particularly those who have had life-threatening hospital admissions due to uncontrolled asthma.15,16
The perceived barriers to youth self-management of chronic health conditions is also influenced by education.17 The development of asthma education varies internationally in terms of structure, designated responsibility of educational delivery, and follow-up on their effectiveness. A Cochrane meta-analyses reviewed the effectiveness of asthma educational interventions in children, including adolescents up to 18 years of age, with a diagnosis of asthma, and reported positive benefits, including decreased hospitalizations, returns to the emergency department and improved self-efficacy.18 However, there is a lack of qualitative evidence specifically identifying youths’ experiences of self-management and asthma education. In addition, criticisms of self-management programs have raised questions about the adoption of adult models of education with chronic illness as being primarily healthcare practitioner driven rather than addressing the expressed needs of adolescents and young people.17 Successful self-management education interventions, in one longitudinal study of young adults with type 1 diabetes, focused on an individualized holistic approach to disease self-management, demonstrating positive long-term health outcomes for study participants.19 Moreover, documented asthma diaries of the physical, psychological and social impacts of the disease indicate that an individualized approach supports health professionals in constructing appropriate self-management educational interventions collaboratively with adolescents and young adults.20 Other studies, including randomized controlled trials and qualitative studies, focus on the role of peers in providing guidance on self-management.2,16,17 These indicate that young people's input into the development of self-care interventions is important and that peer-led asthma educational interventions lend empathy about asthma experiences and the challenges faced in adapting to living with the condition.17
Therefore, in this systematic review, we aim to identify, appraise and synthesize available evidence on youths with asthma and their experiences of self-management education. This review will further consider the role of healthcare providers in developing asthma educational interventions informed by the synthesis of evidence from the youth's viewpoint. This will provide insights which can be utilized by healthcare practitioners in the development of self-management education for this cohort. Consistent with Joanna Briggs Institute methodology, this systematic review will highlight recommendations for practice and policy informed by the quality of the included studies and the contexts in which the studies have been conducted. In order to address the research objectives, we propose conducting a systematic review of evidence generated by qualitative research. A search of the JBI Database of Systematic Reviews and Implementations Reports, the Cochrane Library, CINAHL and PubMed databases did not find any current or planned systematic reviews on this topic.
The review will include studies involving youth with a diagnosis of asthma in primary care, hospital and community settings. For this review, we are adopting the UN definition of “youth” as persons between the ages of 15 and 24 years, without prejudice to other definitions by Member States. All UN statistics on youth are based on this definition.8 If studies have an unclear age range or include those outside our age criteria, we will include the study if the mean age is between 15 and 24 years.2
Studies in which it is clear that participants are children under the age of 15 years will be excluded.
Phenomenon of interest
The review will consider studies that explore the experiences of youths with asthma in self-management education, as described in the introduction.
The context will be primary care, hospital and community settings which include general practice, nurse-led clinics, public health services and all hospital settings.
Types of studies
This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, action research, case studies and feminist research.
International studies published in English will be considered for inclusion in this review. No date limits will be set for the database searches.
The search strategy will aim to locate both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken to identify key texts, followed by an analysis of the text words contained in the title. These along with the index terms used to describe the articles will guide the development of an appropriate search strategy for each information source. A second search using all identified keywords and index terms will then be undertaken across all included databases. It will appear in an appendix of the completed full systematic review; a draft search for MEDLINE is detailed in Appendix I. Thirdly, the reference lists of all identified studies included in the review will be scrutinized for additional studies.
The databases to be searched include: ASSIA, CINAHL, Embase, MEDLINE, PsycINFO, Scopus and SciELO. The search for unpublished or gray literature will include: ProQuest Dissertations and Theses.
The key terms that will inform the development of strategies for each database are derived from MEDLINE and will be revised and combined with free text terms before the full search is conducted in the relevant databases.
The results of the search will be collated and uploaded to EndNote X7 (Clarivate Analytics, PA, USA). All duplicate studies will be removed. Titles and abstracts will be screened by two independent reviewers and assessed against the inclusion criteria for the systematic review. Studies meeting the inclusion criteria will be retrieved in full and the information imported into the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI) (Joanna Briggs Institute, Adelaide, Australia). Full text studies that do not meet the inclusion criteria will be excluded and reasons for exclusion provided in an appendix in the full systematic review. Included studies will be critically appraised by two independent reviewers. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)21 flow diagram will be used to present the results of the search. Any disagreements that arise between the reviewers will be addressed through discussion, or with a third reviewer.
Assessment of methodological quality
Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological quality prior to inclusion in the review using a standardized critical appraisal instrument from JBI SUMARI.22 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. The critical appraisal results will be reported in narrative form and in a table. A consensus process will be used to determine study inclusion, with blinded independent appraisal carried out by two members of the review team. Finally, the results will be discussed by the whole review team to determine the quality of each study.
One reviewer will extract qualitative data from the papers included in the review using the standardized JBI qualitative data extraction tool.22 Operational guidelines and definitions contained in the published JBI information regarding meta-aggregation will be used to guide data extracted.22 In meta-aggregation, data extraction occurs in two phases. Phase 1 involves details about populations, context, culture, geographical location, study methods and the phenomenon of interest. Phase 2 includes analytical data and an illustration of each finding from the included studies which will be assigned a JBI level of credibility.22 Should relevant key data be missing from studies, additional information will be sought from study authors. A draft data extraction template is shown in Appendix II.
Qualitative research findings will be pooled using JBI SUMARI with the meta-aggregation approach.22 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings based on similarity in meaning. These categories will then be subjected to a synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
Assessing certainty in the findings
The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.22,23 The Summary of Findings includes the major elements of the review and details on how the ConQual score is developed. Included in the table is the title, population, phenomenon of interest and context for the specific review. Each synthesized finding from the review will then be presented along with the type of research informing it, a score for dependability, credibility, and the overall ConQual score.22,23
Appendix I: Search strategy (MEDLINE)
The search strategy, developed with the help of a subject librarian, is divided into key concepts based on the topic under review.
Concept 1: Self-management education; Concept 2: Asthma; Concept 3: Experiences; Concept 4: Youth
Concept 1 AND Concept 2 AND Concept 3 AND Concept 4
Appendix II: Data extraction template
1. World Health Organization. Global surveillance prevention and control of chronic respiratory diseases. Geneva: WHO; 2007.
2. Kew KM, Carr R, Crossingham I. Lay-led and peer support interventions for adolescents
. Cochrane Database Syst Rev
3. Bousquet J, Mantzouranis E, Cruz AA, Aït-Khaled N, Baena-Cagnani CE, Bleecker ER, et al. Uniform definition of asthma
severity, control, and exacerbations: document presented for the World Health Organization Consultation on Severe Asthma
. J Allergy and Clin Immunol
2010; 126 5:926–938.
5. Centre of Disease Control and Prevention. Centre of Disease Control and Prevention, Asthma
Data, Statistics and Surveillance (2018) [internet]. [cited 2019 February 16]. Available from: https://www.cdc.gov/asthma/asthmadata.htm
6. Strof B, Taboas P, Velsor-Freidrich B. Adolescents asthma
education programs for teen: Review and summary. J Pediatr Health Care
2012; 26 6:418–424.
7. Ree H, Belyea MJ, Ciurzynski S, Brasch J. Barriers to asthma self-management
: Relationship to psychosocial factors. Paediatr Pulmonol
2009; 44 2:183–191.
8. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management
of chronic disease in primary care. JAMA
2002; 288 19:2469–2475.
9. Bobbitt BG. Surveying what education is doing to help adolescents
move toward maturity. Educ Horiz
1961; 40 2:136–139.
12. Uzuncakmak T, Beser NG. The effects of self-care education of adolescents
on the power of self-care. Journal Caring Sci
2017; 10 3:1368–1373.
13. Fergan L, Ludvigsen MS, Aagaard H, Uhrenfeldt L, Westergren T, Hall E. Experience of health care providers in the transfer of adolescent or young adults with a chronic condition from paediatric to adult hospital care: a systematic review protocol. JBI Database System Rev Implement Rep
2016; 14 2:38–48.
14. Kew KM, Malik P, Aniruddhan K, Normansell R. Shared decision-making for people with asthma
(Review). Cochrane Database of Syst Rev
15. Naimi DR, Freedman TG, Ginsburg KR, Bogen D, Rand CS, Apter AJ. Adolescents
: why bother with our meds? J Allergy Clin Immunol
2009; 123 6:1335–1341.
16. Buston KM, Wood SF. Non-compliance amongst adolescents
: listening to what they tell us about self-management
. Fam Pract
2000; 17 2:134–138.
17. Kime N, McKenna J, Webster L. Young people's participation in the development of self-care intervention- a multi-site formative research study. Health Educ Res
2013; 3 3:552–562.
18. Boyd M, Lasserson TJ, McKean MC, Gibson PG, Ducharme FM, Haby M. Interventions for educating children who are at risk of asthma
-related emergency department attendance: review. Cochrane Database Syst Rev
19. Gerstl EM, Rabl W, Rosenbauer J, et al. Metabolic control as reflected by HbA1c in children, adolescents
and young adults with Type-1 diabetes mellitus: combined longitudinal analysis including 27035 patients from 207 centers in Germany and Austria during the last decade. Eur J Paediatr
2008; 167 4:447–453.
20. Rhee H, Fairbanks E, Butz A. Symptoms, feelings, activities and medication use in adolescents
with uncontrolled asthma
: lessons learned from asthma
diaries. J Paediatr Nurs
2014; 29 1:39–46.
21. Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med
2009; 6 7:e1000097.
22. Lockwood C, Porritt K, Munn Z, Rittenmeyer L, Salmond S, Bjerrum M, et al. Chapter 2: Systematic reviews of qualitative evidence. In: Aromataris E, Munn Z (Editors). Joanna Briggs Institute Reviewer's Manual [internet]. Adelaide: The Joanna Briggs Institute; 2017 [cited 2018 July 5]. Available from: https://reviewersmanual.joannabriggs.org/
23. Munn Z, Porritt K, Lockwood C, Aromataris E, Pearson A. Establishing confidence in the output of qualitative research synthesis: the ConQual approach. BMC Med Res Methodol
2014; 14 108:1–7.