THE ASTHMA SELF-MANAGEMENT PROGRAM
Background: The prevalence of adolescent asthma has been increasing in Taiwan over the last two decades. Achieving control of asthma in adolescents presents particular challenges due to their ongoing physiological, psychological, and social-emotional development. When asthma in adolescents is not well controlled, the negative impacts include absenteeism from school, which can result in limitations in social interactions and physical activities for young people. The few studies on asthma self-management programs in Taiwan have found these programs were not effective in promoting asthma self-management behaviours, though several studies in other countries have found self-management programs to be effective. An effective self-management program, based on Bandura’s self-efficacy model with four sources of information: performance accomplishments (mastery), vicarious experience (role modelling), verbal persuasion, and awareness of physiological response aims to increase patients’ self-efficacy, which can in turn lead to improved self-management behaviours and subsequently improved asthma control. Therefore, in designing programs to improve the condition of Taiwanese adolescents with asthma, it was essential to consider their developmental stage and apply Bandura’s self-efficacy model to enhance adolescents’ self-management behaviours.Methods: A randomized controlled trial research design was used to test the effectiveness of a new asthma self-management program for adolescents in Taiwan. The study outcomes included primary outcomes: self-efficacy and secondary outcomes: outcome-expectation, asthma self-management behaviours, and asthma control. A sample of 83 adolescents, who gave informed consent to participate in the study, were randomized into either the intervention group (n=40) or the control group(n=43). Before the randomization, baseline data including primary and secondary outcomes were collected. The asthma self-management program for the experimental group involved three face-to-face meetings from Weeks 1 to Week 3, and two text messages, were sent to participants after each meeting. The text messages included a reminder to take medication, encouraging participants to avoid asthma triggers, and to monitor their peak respiratory meter to check their lung function. Each participant in this group received the program booklet: “Living with Asthma Together”. Further, participants in the experimental group received a phone call at Week4 from the researcher to discuss any concerns or problems experienced by participants when they carried out the asthma self-management program and solutions for dealing with these problems. Participants allocated to the control group received the usual asthma care from nurses. Data collection for all participants was undertaken at the end of Week 4 or at the beginning of Week 5 by a research assistant who was blinded to group allocation.Results: There were significant differences in change between the control and experimental group adolescents in their levels of asthma self-management self- efficacy, outcome expectancy, as well as prevention and management behaviours. However, there was no significant difference between the two study groups for the Asthma Control Test. Furthermore, analysis was undertaken with all 83 study participants divided into three groups according to the intensity of the asthma self- management program provided: none, medium, and high intensity. Results indicated that there were significant differences between participants who received a high intensity and those who received no intensity of the program for asthma self- management self-efficacy, prevention, and management behaviours. Moreover, participants who received a medium intensity of the program had greater frequencyin performing the asthma prevention behaviour than the participants who received no intensity of the asthma self-management program.Conclusion: The aims of this study were achieved by considering adolescents’ needs and developmental stages, and a theoretical framework was used to guide the development of program. Study findings indicated that the asthma self-management program improved adolescents’ self-efficacy, outcome expectation, as well as asthma prevention and management behaviours. These results have contributed to the evidence supporting effective, and developmentally appropriate, educational support strategies for adolescents as these have been demonstrated to improve prevention and enable more effective management of their asthma symptoms.Table of ContentsKeywords iAbstract iiTable of Contents vList of Figures viiiList of Tables ixList of Abbreviations xiStatement of Original Authorship xiiiAcknowledgements xivChapter 1: Introduction 1 Background 1 Purpose 5 Research questions 5 Alternative hypotheses 5 Significance of research 6 Thesis outline 6Chapter 2: Literature Review 9 Adolescents with asthma 10 Classification of asthma 10 Factors influencing asthma control 15 Intrapersonal factors 15 Interpersonal factors 20 Environmental factors 22 Asthma self-management 23 Health behaviour theories 35 Health Belief Model 36 Theory of Planned Behaviour 37 Trans-Theoretical Model (TTM) of change 39 Social Cognitive Theory 41 Self-efficacy 48 Sources of self-efficacy 49 Outcome-expectancy 52 Implications for an asthma self-management program 53Chapter 3: Methods 57 Research Design 57 Sample 59 Recruiting 60 Randomization 61 Setting 62 Intervention 62 Usual asthma care for the control group 72 The level of effects of the asthma self-management program 87 Instruments 88 Instrument translation 89 Asthma self-efficacy measured using the asthma self-management indices 90 Outcome expectation measured by outcome expectancy 91 Asthma self-management behaviours measured using the asthma self- management indices 92 Asthma control measure by the Asthma Control Test (ACT) 93 Asthma severity measured by the Seattle Asthma Severity and Control Questionnaire 94 Peak expiratory flow 95 Diary of asthma triggers, symptoms and signs 96 Ethical considerations 96 Analysis 98 Data management 98 Data analysis 98 Pilot study 100 A preparation period for pilot study 100 Pilot study 100 Pilot findings 103 Modification for the main study 105Chapter 4: Results 108 Baseline sample characteristicS and outcomes 108 Sample characteristics 108 Outcomes variables at baseline 110 Comparison of demographic variables according to whether participantshad discontinued from the study or not 113 Baseline primary and secondary outcomes for continued and discontinuedstudy participants 115 Comparison of control and experimental groups sample characteristics 117 Comparison of baseline outcome variables between the control and experimental groups 120 Bivariate relationships among the sample characteristics, primary, and secondary outcomes 123 The effectiveness of the asthma self-management program 126 Asthma self-management self-efficacy 126 Outcome expectancy 127 Asthma preventive and management behaviours 127 The Asthma Control Test 129 Asthma medication adherence and peak expiratory flow monitoring 130 Secondary analysis of the effectiveness of asthma self-management onthe primary and secondary outcomes at Week 4 134 Summary of the findings 145Chapter 5: Discussion 147 Effectiveness of the asthma self-management program 148 Asthma self-efficacy 148 Outcome expectancy 153 Asthma preventive and management behaviours 155 Asthma Control Test 161 Strengths and limitations of this study 165 Limitations of the study 166 Conclusion 169Chapter 6: Conclusions and Recommendations 171 conclusion and significance of research 171 Recommendations 172 Recommendation for clinical practice 172 Recommendations for education 173 Recommendations for future research 174 Recommendations for policy development 175 Conclusion 176References 177Appendices 203 Permission from QUT research committee 203 Permission from Chang Gung Medical Hospital 204 Permission to use, adopt, and translate asthma self-management indices(asthma self-efficacy, asthma prevention and management behaviour) 205 Permission to using, adopting, and translation outcome expectancy for adolescents with asthma 206 Permission to use, and translate the Seattle Asthma Severity and Control Questionnaires 207 Permission to use the Asthma Control Test questionnaires 208 Questionnaires: English version 209 Questionnaires Chinese version 218C-1 The asthma self-management booklet: Living with Asthma Together 225C-2.1 The asthma self-management booklet for junior high school student(Chinese version) 249C-2.2 The asthma self-management booklet for senior high school student(Chinese version) 284 Chapter 1: IntroductionBACKGROUND OF THE STUDYAsthma is a chronic condition where inflammation of the respiratory tract results in difficulty in breathing. It is estimated that there are 340 million people with asthma worldwide and 14% of children have experienced asthma symptoms (Global Asthma Network (GAN) report, 2014). The prevalence of asthma in adolescents has been increasing in the last 10 years at a rate of 0.06% (Pearce et al., 2007). Additionally, a high prevalence of asthma (more than 20%) for adolescents aged between 13-14 years was found in North America, the United Kingdom, and Australia (Pearce et al., 2007), and this group in particular had to bear the more negative effects such as death or disability of people other aged (GAN, 2014). Although the reasons for increased asthma cases are unclear, issues of measurement and data collection, as well as an environmental factors, such as air pollution, second-hand smoke, and lifestyle change may be influential (GAN, 2014).Similar to other developed urban communities such as North America, the United Kingdom, and Australia, Taiwan has experienced an increased trend in asthma cases. For example, asthma prevalence data from the International Study of Asthma and Allergies in Childhood (ISAAC) for 13-14 year olds who had a wheezing experience in the past 12 months in Taiwan ranged from 5.2% in 1994- 1995 to 7.0% in 2001 (Kao, Huang, Ou, & See, 2005; Lee, Shin, & Oh, 2008). The data indicated that the prevalence of asthma in school aged children in Taiwan was more than a tenfold increase from 1974 to 1995 (Weng et al., 2007). Based on the National Health Insurance database from 2007 to 2009 in Taiwan, which data base included 99% of Taiwanese people’s healthy information, scholars (Hwang et al.,2010) undertook a secondary data analysis from this database. Results of this analysis indicated that the overall eight-year prevalence of asthma was 15.7% for adolescents. Further, in the National Survey data, which used a multi-stage stratified systematic random sample of 25,632 in 2009 and 30,680 in 2005, indicated the prevalence of asthma in people aged from 12 to 19 years was 2.6% in 2005, increasing to 7.3 % in 2009. The issue of asthma has attracted government attention and was included in Taiwan’s Healthy People 2020 publication (Ministry of Health and Welfare, 2009).When adolescent and children’s asthma conditions are not well managed, several negative impacts for individuals may occur. These impacts are students being absent from school (Ahmad & Grimes, 2011) and having lower academic achievements (Champaloux & Young, 2015; Erwin, Carrico, Glass, & Roberts, 2010). Moreover, poorly controlled asthma causes restrictions in social interactions and physical activities for young people (Hennessy-Harstad, 2013), which may cause emotional influences, such as depression and anxiety (Champaloux & Young, 2015; Mancuso, Rincon, McCulloch, & Charlson, 2001). Furthermore, poor asthma control could increase economic burden, cause extra stress for families (Wood, Miller, & Lehman, 2015), and lead to unscheduled hospital visits (Magzamen, Patel, Davis, Edelstein, & Tager, 2008), although the rates of hospital admission for asthma have most recently declined (GAN, 2014). There are many asthma programs worldwide to help adolescents achieve good control of their condition. However, many of these programs do not provide emotional support for adolescents with asthma or demonstrate having taken account of adolescent development. A successful adolescent asthma program must be based on adolescent needs (Sadof & Kaslovsky, 2011).Although there are many programs in Taiwan to help patients with asthma improve their asthma morbidities, few studies have examined the effectiveness of such programs for adolescents with asthma. These programs (Chiang, Huang, Yeh, & Lu, 2004; Jan, Wang, Tseng, Su, & Liu, 2007; Maa et al., 2010; Tzeng, Chiang, Hsueh, Ma, & Fu, 2010; Yang, Chen, Chiang, & Chang, 2005) placed an emphasis on knowledge about asthma management, such as avoiding triggers, recording symptoms of asthma, or peak expiratory flow rate, as well as understanding the use of control and relief medication. Findings indicated that interventions did not improve participants’ preventive behaviours, such as avoiding second hand smoke (Tzeng et al., 2010) or self-management behaviours (Chiang et al., 2004). In some studies (Jan et al., 2007; Maa et al., 2010; Yang et al., 2005), prevention and management behaviours were not considered an indicator for the effectiveness of asthma programs. This seems to ignore the important role of behaviour in achieving an improvement in the asthma condition. The studies of asthma self-management programs (Jan et al., 2007; Maa et al., 2010; Tzeng et al., 2010) in Taiwan have not demonstrated success in outcomes such as maintaining, changing, and creating behaviours, or being able to deal with their emotions after being diagnosed with a chronic disease (Lorig & Holman, 2003). Self-management programs can improve patients’ behaviours with chronic disease (Strecher, McEvoy DeVellis, Becker, & Rosenstock, 1986). None of these studies addressed the very important concepts regarding Bandura’s notion of self-efficacy which is “concerned with people’s beliefs in their capabilities to perform a specific action required to attain a desired outcome” (Bandura, 1995, p. 2). Studies (Chiang et al., 2004; Lubans, Foster, & Biddle, 2008) found that self-efficacy was an important factor in changing people’s behaviours and a mediator between intervention based on theories and activity.Therefore, Chiang et al. (2004) used self-efficacy in their program. However, it was unclear how self-efficacy was addressed in this program. Studies in other countries, the United States, United Kingdom, and Jordan, found that self-efficacy was a very important factor in improving the behaviour of adolescent (Bruzzese, Unikel, Gallagher, Evans, & Colland, 2008) and adults (Steed, Barnard, Hurel, Jenkins, & Newman, 2014) in managing chronic disease.Adolescents’ stage of physiological, psychological, and social-emotional development can lead to difficulties in adopting a regime for achieving well- controlled asthma (Edgecombe, Latter, Peters, & Roberts, 2010). Bruzzese et al. (2004) proposed that some adolescents are not ready to manage their disease and reported a study that found adolescents with asthma had a high frequency for non- adherence to control symptoms of asthma (Mosnaim et al., 2014). Adolescents think the difficulty in breathing will go away when they grow up (Velsor-Friedrich, Vlasses, Moberley, & Coover, 2004). Moreover, some adolescents do not like to use medicine to control their asthma symptoms at school, as they do not like their friends to know about their health problems (Bruzzese et al., 2004). These phenomena may suggest that adolescents poorly recognize and manage the symptoms of asthma, or adapt themselves to living with asthma (Hughes, 2012). Therefore, strategies and support focusing on adolescent needs and stages of development, and based on a self-efficacy model are the key elements to enhancing self-management in an adolescent asthma control model to improve Taiwanese adolescents’ self- management.As the goals of the Healthy People 2020 publication (Ministry of Health and Welfare, 2009) recommend self-management for promoting good control of asthma,this study aimed to develop a new asthma self-management program and to evaluate the effectiveness of the program for Taiwanese adolescents. PURPOSEThe purpose of this study was to develop a new self-management program based on a self-efficacy model and to test its effectiveness for adolescents with asthma in Taiwan. The main outcome was self-efficacy and the secondary outcomes were outcome expectancy, asthma prevention, and management behaviours, as well as the health outcome. RESEARCH QUESTIONSThe results of this study aim to answer the following question:Do Taiwanese adolescents with asthma receiving the newly developed asthma self-management program have improved levels of self-efficacy, outcome expectancy, self-management behaviours, as well as well-controlling their asthma symptoms at Week 4, compared to Taiwanese adolescents receiving the usual asthma education provided at hospital clinic? ALTERNATIVE HYPOTHESES· Taiwanese adolescents with asthma who receive the asthma self- management program will have significantly greater asthma self-efficacy in asthma self-management compared to those who receive the usual asthma education provided in hospital clinic.· Taiwanese adolescents with asthma who receive the asthma self- management program will have significantly greater outcome expectancy in performing asthma prevention and management behaviours compared to those who receive the usual asthma education provided in a hospital clinic.⦁ Taiwanese adolescents with asthma who receive the asthma self- management program will have significantly greater outcome expectancy in asthma self-management compared to those who receive the usual asthma education provided in a hospital clinic.⦁ Taiwanese adolescents with asthma who receive the asthma self- management program will have greater improvement in the Asthma Control Test compared to those who receive the usual asthma education provided in hospital clinic care. SIGNIFICANCE OF RESEARCHThe asthma self-management program in this study aims to increase adolescents’ asthma self-management self-efficacy in order to boost their asthma self-management behaviours. Although there are a few asthma programs in Taiwan, there are fewer published reports on the effectiveness of these types of program in building asthma prevention and management behaviours. Therefore, this study aims to improve adolescents’ asthma self-management, self-efficacy, and outcome expectancy, so that adolescents’ self-management behaviours will be enhanced, and their asthma condition ultimately improved. The findings of this research will contribute to guidelines for improving adolescents’ management of asthma. THESIS OUTLINEThe thesis includes six chapters. Chapter 1 presents the background and significance of this research, including the research aims and research questions. Chapter 2 presents the literature review regarding uncontrolled asthma in adolescents, health behaviour theory, and self-management for adolescents with asthma. The conceptual framework of the self-efficacy model is then presented, which was usedto guide the development of the asthma self-management program for adolescents in Taiwan. Chapter 3 describes the research design, data collection, data analysis, and results of the pilot study for the main study. Chapter 4 reports the results. Finally, Chapter 5 discusses the key findings, and limitation and strengths of this study. Chapter 6 presents the conclusions on significant findings and generates recommendations for clinical practice, future research, and education, as well as policy development to improve adolescents’ asthma self-care in Taiwan.