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Barriers to Self-Management in African American Adolescents with Asthma
From Wayne State University, Detroit, MI (Dr. Gibson-Scipio), and the University of Texas Rio Grande Valley, Edinburg, TX (Dr. Krouse).
Abstract
- Objective: To review the literature on barriers to asthma self-management amo
ng African American adolescents. - Methods: Review of the literature.
- Results: Asthma self-management barriers experienced by African American adolescents are often related to developmental needs, lack of knowledge, and personal perspectives and experiences. Adolescents find managing their symptoms and adhering to prescriptive therapies a burden and desire to be more like healthy peers. As they struggle to identify with peers, they may engage in risky behaviors such as ignoring symptoms and delaying treatment, thus leading to poorer asthma control and health outcomes. African American adolescents struggle with perceptions of racial biases from health care providers and teachers that interfere with self-management behaviors. They also describe the influence of culturally based practices learned from caregivers that contribute to their misconceptions and inadequate skills in effectively managing their asthma.
- Conclusion: Researchers should seek to develop interventions to address the unique contextual and culturally based needs of African American adolescents that support the development of effective asthma self-management behaviors. This may include making use of family members (especially mothers) and extended support for self-management during this period of rapid growth and transition. Health care providers should consider a team-based approach to the adolescent patient. Such an approach should be grounded in recommendations from national guidelines that suggest a patient-centered approach to care that includes a partnership between the patient and the provider to address unique barriers to effective self-management.
Keywords: youth; caregiver; drug-therapy; self-efficacy; disease-management; patient-centered care.
Effective asthma self-management by urban African American adolescents is a critical aspect of care that should be addressed with vigilance due to the persistent disparities in disease prevalence, morbidity, and mortality compared to Caucasians.1-3 The overarching goal of asthma self-management is to achieve symptom control, maintain normal activity levels, and minimize future risk of exacerbations and medication side effects.4,5 Best practices for asthma self-management begin with a partnership between health care providers and clients (including parent/caregiver). This relationship should help affected individuals gain asthma control based on knowledge of their disease and treatment options, confidence and skills in trigger avoidance, medication administration, and management of acute exacerbations.4,5
Among youth aged 18 years and younger, African Americans have the highest asthma prevalence rates of all racial and ethnic groups, and between 2001 and 2009 asthma prevalence rates rose by 50% among African American youth.6 As of 2015, prevalence rates for asthma among African American youth were 13.4%, as compared to 7.4% for white youth.7 African American youth have been found to have more frequent asthma exacerbations and related school absences than white youth.8 Furthermore, African American youth younger than 18 years are more likely to be admitted to the hospital for asthma and are 10 times more likely to die from asthma compared to non-Hispanic white children.6
Urban African American adolescents with asthma are particularly vulnerable to poor asthma self-management due to the complexity of the disease in this population.3 African American youth must deal with multiple adverse environmental conditions, lack of knowledge or disbelief concerning effective disease self-management strategies, variable access and quality of care, and the psychosocial dynamics of being young while having a chronic disease.2,3,9-11 It is important to understand and address barriers to successful asthma self-management during adolescence, as behaviors developed during this stage of life often persist into adulthood.9 In this article, we review the literature on barriers to asthma self-management among African American adolescents and offer suggestions on clinical strategies for improving self-management in this vulnerable population.
Methods
The initial search strategy was developed in collaboration with an experienced librarian. Keywords, MeSH terms, and potential databases were identified. Keywords included urban, African American, adolescent, asthma, self-management, and barriers. These terms were expanded based on search results and a review of abstracts that fit the intent of our review. The search was limited to U.S. studies published between 2005 and 2017. Excluded from the search were conference abstracts, doctoral dissertations, master’s theses, meta-analyses, systematic reviews, and studies conducted outside of the United States. Additional articles for the review were identified during the review process from the reference lists of the publications.
Abstracts were reviewed for articles that reported a study population inclusive of African American adolescents with asthma and that were related to self-management. Studies that used qualitative and other descriptive methods and cohort and randomized control trials were reviewed. Due to the limited number of articles found that exclusively focused on African Americans, the authors set a threshold for African American participants at 40% or greater for inclusion in this review.
Full papers were retrieved that met the inclusion criteria for a full review. Each author initially independently reviewed a selected number of papers and abstracted the study purpose, sample, study design, results, conclusions, and limitations. Subsequently, both authors reviewed in tandem and then discussed each selected manuscript to assure the appropriateness for inclusion. The subject matter was considered the priority for inclusion in the review. Study methods, sample size, and noted limitations were categorized but were not considered as a basis for exclusion. Thematic analysis was used to identify common themes across studies.
Results
We identified 23 papers that met our criteria (Table). Five common themes were found that related to barriers in disease self-management for African American adolescents: (a) knowledge and skills, (b) beliefs and attitudes, (c) personal/emotional factors, (d) caregivers, and (e) schools.
Knowledge and Skills
Adequate knowledge of the elements of asthma self-management is critical for achieving control of this condition. Asthma knowledge includes a basic understanding of the disease process and treatment strategies, an awareness of early signs and symptoms of worsening asthma, and an understanding of how to manage environmental triggers.4,5 Sin and colleagues conducted one of the earlier studies to examine the influence of asthma knowledge on asthma self-management in African American adolescents and found a significant positive association between knowledge and asthma self-management behaviors.12
Adherence to an asthma medication, especially inhaled corticosteroids (ICS), is one of the cornerstones to successful self-management of asthma.13,14 Consistent use of ICS therapy to control asthma symptoms and disease progression is often suboptimal in African American adolescents and tends to worsen as they age;15 studies have found lower adherence levels were more prominent in older African American adolescents and males.13,16 In a recent study of adolescents with persistent asthma who were prescribed daily ICS, youth with greater ICS knowledge as assessed using a standardized instrument demonstrated significantly higher adherence rates.13 Proper technique in the use of an inhaler is also important in medication administration. Asthma ICS medication delivery devices vary significantly and require different techniques for medication administration. However, inhaler device skills have been found to be very inadequate in high-risk African American adolescents.17 Thus, knowledge related to ICS therapy and proper skills in the use of inhaler devices is an important aspect of asthma self-management that have been found to be inadequate in African American Adolescents.
Interventions and programs geared to improving education may lead to improved self-management. Multisystemic Therapy-Health Care (MST-HC) is a tailored home-based intervention that includes knowledge and skill-building components. In a study of African American youth with poorly controlled asthma, the program was found to improve illness management.18 In addition, adolescents who complete formal asthma education programs demonstrate significantly higher scores in self-management than those youth who do not participate in these programs.13,19 Unfortunately, few African American teens report participation in an asthma education program.19 In a study of a motivational interviewing intervention to improve controller medication adherence for African American adolescents,14 youth reported gaining more knowledge about their asthma medications and were significantly more motivated to take their controller medications after participating in the intervention; however, while adherence to controller medications was greater than baseline, it was not significantly different.14 This study demonstrated the value of asthma education and the feasibility of a motivational intervention to support controller medication adherence. However, this study also demonstrated the complexity of medication adherence in that neither knowledge or motivation led to significant changes in medication adherence among African American adolescents.
Low health literacy can also act as a barrier to asthma self-management. Health literacy requires skills and knowledge that enable an individual to communicate, process, and understand basic health information that informs health decisions.20 Health literacy was found to be associated with indicators of poor disease self-management among urban African American adolescents in grades 9 through 12.21 In this study, health literacy was established using questions about confidence in filling out medical forms, self-reported problems with learning about the youth’s medical condition, and the need for assistance in reading hospital materials. Adolescents with poor health literacy scores were more likely to reside in a household with the following characteristics: mother with less than a high school education, Medicaid health insurance, family members with a body mass index exceeding the 85th percentile, and lack of rescue medication. Poor health literacy was most common among younger adolescents (ie, ninth graders). Some youth with poor health literacy also reported more emergency department visits, hospitalizations, and lower overall quality of life.21
Beliefs and Attitudes
Beliefs and attitudes towards taking asthma medications can act as barriers to adherence in the adolescent. African American adolescents often report the belief that ICS are not helpful or necessary.16,22-25 These beliefs have been correlated with a lack of understanding of the inflammatory mechanisms of asthma, reports of asthma attacks despite use of controller medications, fear of addiction to medications, and a belief that nontraditional interventions (eg, exercise) will work better to get rid of asthma or abate symptoms.16-19,22-24 African American adolescents also report beliefs that asthma will go away or get better as they age, and they are willing to forgo the use of controller medications based on these beliefs.24
African American adolescents often engage in asthma self-management independent of caregivers. These youth describe asthma self-management activities an annoyance and of low priority in part due to competing tasks and negative interactions with caregivers.25 During early adolescence asthma self-management is often suboptimal, and as youth age they become less observant regarding their asthma and are less likely to seek help.26 Adolescents’ beliefs and low prioritization of asthma self-management may contribute to forgetfulness and loss of inhalers, which are common reasons reported for poor adherence to ICS.16,23-26 Further, the role of caregivers during this period has often been overlooked. Caregivers of African American adolescents have been found to be stressed and overwhelmed with personal responsibilities and neighborhood conditions, leaving them little time to attend to the asthma self-management behavior of youth. Due to these contextual factors, interactions with chronically ill youth may be strained, resulting in negative interactions with youth related to asthma self-management. However, in an intervention study that used multisystemic therapy (an approach that targets the affected individual, family, and community), improvement in positive parenting behaviors related to asthma self-management contributed to improved ICS adherence by adolescents.27
Adolescents can perceive traditional asthma self-management as conflicting with their own personal and/or cultural beliefs. They may seek options beyond the use of medicine and have voiced preferences for behaviors that they believe will “strengthen their lungs” more naturally.24 An appreciation of how youth might use complementary/alternative medicine (CAM) as an adjunctive therapy or in place of evidence-based asthma care is important to understanding the potential effect on morbidity and mortality. Behaviors and beliefs about the use of CAM have not been well studied among urban African American adolescents with asthma. Only one study was found that assessed the use of CAM among a primarily urban African American adolescent population. In that study, 71% of the population reported using some form of CAM during the past 30 days.28 Prayer and relaxation were the most frequently used strategies in the management of asthma symptoms. Perceived efficacy of relaxation and prayer among teens who engaged in this form of CAM was 87% and 85%, respectively. Other CAM strategies included yoga, meditation, guided imagery, and biofeedback. When adolescents were asked if they shared their use of CAM in asthma management with a health care provider, most reported sharing the use of yoga and dietary changes but were least likely to share their use of prayer and guided imagery.28
Personal/Emotional Factors
African American adolescents have reported asthma as a limiting factor in terms of both physical and social activities. They perceive asthma as a burden to themselves and others (eg, peers, family, coaches).9,25 The burden of asthma is further exemplified in the emotional response to the symptoms of the disease and the self-management responsibilities. The need to prevent and respond to asthma symptoms is associated with being embarrassed, frustrated, angry, annoyed, worried, lonely, and isolated.9,11,25 Negative coping strategies by youth in response to psychosocial experiences include decisions to disregard or give minimal attention to asthma symptoms and to delay or not take prescribed medications. Students report ignoring asthma symptom management while engaging in physical activities to maintain a sense of normalcy among peers and as a way of dealing with perceptions by coaches or teachers that they are weak or in need of being protected.24,25
Negative thoughts and experiences can result in depressive disorders and poor quality of life. Depression is a common finding among urban youth with asthma.29,30 Youth diagnosed with asthma who have comorbid depression may benefit from interventions to improve self-management. In a secondary analysis from a Web-based asthma management intervention targeting African American adolescents, depression was found to have a modifying effect on the emotional domain of quality of life for youth in the intervention arm of the study. This finding indicates that participants who were depressed and who reported low levels of emotional quality of life benefited from the Web-based interventions that targeted self-management.31
Caregivers
Caregivers (especially moms) are a common source of support for the development and implementation of asthma self-management behaviors in adolescents.32 Caregivers sometimes hold beliefs similar to those of youth and believe the urban environment can act as a barrier to asthma management.9,25,32 They describe the complexity of asthma treatment plans, a lack of understanding of the disease process, and insensitivity of health care providers to their expressed needs along with the providers’ limited cultural awareness in the development of self-management plans.9,22,33 Caregivers describe how family finances, insurance gaps, access to care, and their own familial/cultural beliefs influence their decisions and ability to support their child’s asthma management.33 When faced with the cost of care they report instances of having to decide between necessities such as food and housing or co-pays for medications and office visits.22,33 They also report concerns about visits with multiple providers due to an inability to access their primary care provider, which can lead to delays in their child being diagnosed with asthma.22
Caregivers report a need to include culturally based practices, past experiences, and personal beliefs into the adolescents’ asthma management plan.22,32,33 In a small interview-based study of caregivers residing in 3 New Jersey public housing communities, caregivers reported preferring “familial” methods of controlling asthma (eg, restriction of activities; use of showers, steam, vaporizers, and nebulizers) over evidence-based recommendations. Many caregivers were confused or lacked knowledge about asthma action plans.33 Caregivers have also been found to lack adequate or accurate knowledge related to asthma medications and factors that improved or worsened asthma. While caregivers report a desire to help educate their teens by passing on what they know, their lack of adequate asthma knowledge may hamper their efforts and potentially worsen the teens’ asthma self-management.32
While African American caregivers often describe themselves as hypervigilant concerning their child’s asthma, they may report different information than their adolescent when both are questioned about asthma symptom experiences and functional status.34 Factors increasing the level of congruence between caregiver and teen asthma symptom reports were found to be related to the adolescents’ age and asthma disease classification. Symptom questionnaire responses of older teens and those with mild intermittent asthma were more likely to be similar to caregiver reports. The researchers concluded that clinicians and researchers may obtain reliable asthma symptom and functional status reports by asking the adolescent directly.34
Schools
Caregivers and adolescents describe schools as a threat to self-management and the overall health of youth with asthma.9,32 They perceive that a lack of knowledge by staff, teachers, and coaches contributes to inattentiveness or disbelief in the credibility of reported asthma symptoms by youth.11,23 These misperceptions and the lack of attentiveness by adults in the school may pose safety and health issues for African American youth.9,25,33,34 For example, adolescents report pressure from teacher, coaches, and peers in school settings to partake in sports and/or gym classes. Youth want to identify with healthy peers and thus often choose not to take asthma medications during such activities or opt to continue participating while being compromised by airway obstruction. Of great concern were reports by caregivers and teens of not being allowed to call a parent for support or retrieve their medications when needed for asthma symptoms.32
Future Research and Practice Implications
In this review, we identified 5 common themes around barriers to asthma self-management for African American adolescents (knowledge and skills, beliefs and attitudes, personal/emotional factors, caregivers, and schools). Caregivers, especially mothers, play a pivotal role in the development of effective asthma self-management behaviors. Depsite good intentions, there is evidence of caregivers passing on ineffective experiential and culturally based beliefs and practices to their adolescents that can negatively influence self-care behaviors.13,28,38 Studies are needed to further investigate these findings among caregivers as their beliefs and practices for asthma self-management have been found to coexist among adolescents. Studies that investigate how to incorporate caregiver asthma knowledge, cultural beliefs and behaviors in developing self-management interventions have the potential to positively influence asthma outcomes among African American adolescents.27 The unique cultural beliefs, contextual environmental, and social disparities faced by African American caregivers should not be neglected.
African American adolescents, like adolescents in other racial or ethnic groups, desire to be autonomous in their asthma self-management. However, as adolescents age their adherence behaviors often decline. This may suggest a need for a longer transition period to self-management that extends into emerging adulthood (18-25 years). While youth want to feel supported, there appears to be a fine line between receiving needed support and what youth describe as “nagging” behaviors by adults. Additional investigations into how asthma responsibilities are transitioned from the parent to youth and how best to support the development and maintenance of related behaviors and skills are warranted. In addition, teens described problems related to communicating with health care providers, noting a lack of clarity in explanations received about how to manage their asthma. Some teens believed the communication challenges were based on beliefs and biases held by providers that African American youth had limited capacities for self-management.9 There is a need to better understand interactions among African American adolescents, parents, and clinicians so that communication and transitioning asthma care to the youth will produce optimal health outcomes.
According to asthma guidelines, the patient-provider relationship is essential to effective asthma self-management.4,5 However, there is little mention in the literature of team-based care. Clinicians such as physicians, physician assistants, and nurse practitioners provide direct care to adolescents in terms of disease management and the overall effectiveness of treatment plans. African American youth demonstrate a need for asthma education that is comprehensive and that is contextualized to their daily lives. A team-based approach to care that includes social workers and community health workers may help to extend the reach of clinicians. Follow-up times with families and youth between office visits can be used to support adolescents to develop asthma self-management and allow them a safe space to describe frustrations and other emotions that contribute to their desire to be disease-free.
Summary
Asthma is a chronic disease that is often more severe and difficult to manage in African American adolescents. While African American adolescents describe developmental needs like those of other youth, cultural beliefs and contextual experiences influence their self-care management in unique ways. Opportunities exist to better understand the needs of African American adolescents and to help them successfully gain the knowledge, skills, and behaviors needed to effectively engage in self-management of their asthma.
Corresponding author: Wanda Gibson-Scipio, PhD, FNP-BC, FAANP, 5557 Cass Ave., 346 Cohn Building, Detroit, MI 48324; gibsonsc@wayne.edu.
Financial disclosures: None.
1. Akinbami LJ, Moorman JE, Bailey C, et al. Trends in asthma prevalence, health care use, and mortality in the United States, 2001-2010. NCHS Data Brief. 2012:1-8.
2. Bruzzese JM, Bonner S, Vincent EJ, et al. Asthma education: the adolescent experience. Patient Educ Couns. 2004;55:396-406.
3. Bryant-Stephens T. Asthma disparities in urban environments. J Allergy Clin Immunol. 2009;123:1199-1206.
4. National Heart, Lung, and Blood Institute. National Asthma Education and Prevention Program. Expert Panel Report 3: Guidelines for the Diagnosis and Management of Asthma. Bethesda, MD: National Heart, Lung, and Blood Institute; 2007.
5. GINA. Global strategy for asthma management and prevention. 2017. www.ginaasthma.org. Accessed Dec 15, 2017.
6. Centers for Disease Control and Prevention. Vital signs. 2011. https://www.cdc.gov/vitalsigns/asthma/index.html. Accessed December 15, 2017.
7. Centers for Disease Control and Prevention. 2015 National Health Interview Survey (NHIS) Data. National Center for Environmental Health, 2017. https://www.cdc.gov/asthma/nhis/2015/table4-1.htm. Accessed December 15, 2017.
8. Gupta RS, Carrión-Carire V, Weiss KB. The widening black/white gap in asthma hospitalizations and mortality. J Allergy Clin Immunol. 2006;117:351-358.
9. Evans-Agnew R. Asthma management disparities: a photovoice investigation with African American youth. J Sch Nurs. 2016;32:99-111.
10. Naar-King S, Ellis, D, Kolmodin, K. Feasibility of adapting multisystemic therapy to improve illness management behaviors and reduce asthma morbidity in high risk African American youth: a case series. J Child Fam Stud. 2009;18:564-573.
11. Rhee H, Wenzel J, Steeves RH. Adolescents’ psychosocial experiences living with asthma: a focus group study. J Pediatr Health Care. 2007;21:99-107.
12. Sin MK, Kang DH, Weaver M. Relationships of asthma knowledge, self-management, and social support in African American adolescents with asthma. Int J Nurs Stud. 2005;42:307-313.
13. Mosnaim G, Li H, Martin M, et al. Factors associated with levels of adherence to inhaled corticosteroids in minority adolescents with asthma. Ann Allergy Asthma Immunol. 2014;112:116-120.
14. Riekert KA, Borrelli B, Bilderback A, Rand CS. The development of a motivational interviewing intervention to promote medication adherence among inner-city, African American adolescents with asthma. Patient Educ Couns. 2011;82:117-122.
15. Bruzzese JM, Stepney C, Fiorino EK, et al. Asthma self-management is sub-optimal in urban Hispanic and African American/black early adolescents with uncontrolled persistent asthma. J Asthma. 2012;49:90-97.
16. Naimi DR, Freedman TG, Ginsburg KR, et al. Adolescents and asthma: why bother with our meds? J Allergy Clin Immunol. 2009;123:1335-1341.
17. Naar-King S, Lam P, Ellis D, et al. Asthma medication device skills in high-risk African American adolescents. J Asthma. 2013;50:579-582.
18. Ellis DA, King P, Naar-King S. Mediators of treatment effects in a randomized clinical trial of multisystemic therapy-health care in adolescents with poorly controlled asthma: disease knowledge and device use skills. J Pediatr Psychol. 2016;41:522-530.
19. Crowder SJ, Hanna KM, Carpenter JS, Broome ME. Factors associated with asthma self-management in African American adolescents. J Pediatric Nurs. 2015;30:e35-e43.
20. U.S. Department of Health and Human Services. Healthy people 2010: understanding and improving health. 2nd ed. Washington (DC): U.S. Government Printing Office; November 2000.
21. Valerio MA, Peterson EL, Wittich AR, Joseph CLM. Examining health literacy among urban African-American adolescents with asthma. J Asthma. 2016;53:1041-1047.
22. Laster N, Holsey CN, Shendell DG, et al. Barriers to asthma management among urban families: caregiver and child perspectives. J Asthma. 2009;46:731-739.
23. Ayala GX, Miller D, Zagami E, et al. Asthma in middle schools: what students have to say about their asthma. J Sch Health. 2006;76:208-214.
24. Gibson-Scipio W, Gourdin D, Krouse, HJ. Asthma self-management goals, beliefs and behaviors of urban African American adolescents prior to transitioning to adult health care. J Pediatric Nurs. 2015;30:e53-e61.
25. Blaakman SW, Cohen A, Fagnano M, Halterman JS. Asthma medication adherence among urban teens: a qualitative analysis of barriers, facilitators and experiences with school-based care. J Asthma. 2014;51:522-529.
26. Bruzzese JM, Idalski Carcone A, Lam P, et al. Adherence to asthma medication regimens in urban African American adolescents: application of self-determination theory. Health Psychol. 2014;33:461-464.
27. Ellis DA, King P, Naar-King S, et al. Effects of family treatment on parenting beliefs among caregivers of youth with poorly controlled asthma. J Dev Behav Pediatr. 2014;35:486-493.
28. Cotton S, Luberto CM, Yi MS, Tsevat J. Complementary and alternative medicine behaviors and beliefs in urban adolescents with asthma. J Asthma. 2011;48:531-538.
29. Bahreinian S, Ball GDC, Colman I, et al. Depression is more common in girls with nonatopic asthma. Chest. 2011;140:1138-1145.
30. Bender BG. Risk taking, depression, adherence, and symptom control in adolescents and young adults with asthma. Am J Respir Crit Care Med. 2006;173:953-957.
31. Guglani L, Havstad SL, Johnson CC, et al. Effect of depressive symptoms on asthma intervention in urban teens. Ann Allergy Asthma Immunol. 2012;109:237-242.
32. Gibson-Scipio W, Krouse HJ. Goals, beliefs, and concerns of urban caregivers of middle and older adolescents with asthma. J Asthma. 2013;50:242-249.
33. Wagner F, Steefel L. Beliefs regarding asthma management relating to asthma action plans (AAPs) of African American caregivers residing in Newark, New Jersey public housing communities. J Pediatr Nurs. 2017;36:92-97.
34. Houle CR, Joseph CL, Caldwell CH, et al. Congruence between urban adolescent and caregiver responses to questions about the adolescent’s asthma. J Urban Health. 2011;88:30-40.
From Wayne State University, Detroit, MI (Dr. Gibson-Scipio), and the University of Texas Rio Grande Valley, Edinburg, TX (Dr. Krouse).
Abstract
- Objective: To review the literature on barriers to asthma self-management amo
ng African American adolescents. - Methods: Review of the literature.
- Results: Asthma self-management barriers experienced by African American adolescents are often related to developmental needs, lack of knowledge, and personal perspectives and experiences. Adolescents find managing their symptoms and adhering to prescriptive therapies a burden and desire to be more like healthy peers. As they struggle to identify with peers, they may engage in risky behaviors such as ignoring symptoms and delaying treatment, thus leading to poorer asthma control and health outcomes. African American adolescents struggle with perceptions of racial biases from health care providers and teachers that interfere with self-management behaviors. They also describe the influence of culturally based practices learned from caregivers that contribute to their misconceptions and inadequate skills in effectively managing their asthma.
- Conclusion: Researchers should seek to develop interventions to address the unique contextual and culturally based needs of African American adolescents that support the development of effective asthma self-management behaviors. This may include making use of family members (especially mothers) and extended support for self-management during this period of rapid growth and transition. Health care providers should consider a team-based approach to the adolescent patient. Such an approach should be grounded in recommendations from national guidelines that suggest a patient-centered approach to care that includes a partnership between the patient and the provider to address unique barriers to effective self-management.
Keywords: youth; caregiver; drug-therapy; self-efficacy; disease-management; patient-centered care.
Effective asthma self-management by urban African American adolescents is a critical aspect of care that should be addressed with vigilance due to the persistent disparities in disease prevalence, morbidity, and mortality compared to Caucasians.1-3 The overarching goal of asthma self-management is to achieve symptom control, maintain normal activity levels, and minimize future risk of exacerbations and medication side effects.4,5 Best practices for asthma self-management begin with a partnership between health care providers and clients (including parent/caregiver). This relationship should help affected individuals gain asthma control based on knowledge of their disease and treatment options, confidence and skills in trigger avoidance, medication administration, and management of acute exacerbations.4,5
Among youth aged 18 years and younger, African Americans have the highest asthma prevalence rates of all racial and ethnic groups, and between 2001 and 2009 asthma prevalence rates rose by 50% among African American youth.6 As of 2015, prevalence rates for asthma among African American youth were 13.4%, as compared to 7.4% for white youth.7 African American youth have been found to have more frequent asthma exacerbations and related school absences than white youth.8 Furthermore, African American youth younger than 18 years are more likely to be admitted to the hospital for asthma and are 10 times more likely to die from asthma compared to non-Hispanic white children.6
Urban African American adolescents with asthma are particularly vulnerable to poor asthma self-management due to the complexity of the disease in this population.3 African American youth must deal with multiple adverse environmental conditions, lack of knowledge or disbelief concerning effective disease self-management strategies, variable access and quality of care, and the psychosocial dynamics of being young while having a chronic disease.2,3,9-11 It is important to understand and address barriers to successful asthma self-management during adolescence, as behaviors developed during this stage of life often persist into adulthood.9 In this article, we review the literature on barriers to asthma self-management among African American adolescents and offer suggestions on clinical strategies for improving self-management in this vulnerable population.
Methods
The initial search strategy was developed in collaboration with an experienced librarian. Keywords, MeSH terms, and potential databases were identified. Keywords included urban, African American, adolescent, asthma, self-management, and barriers. These terms were expanded based on search results and a review of abstracts that fit the intent of our review. The search was limited to U.S. studies published between 2005 and 2017. Excluded from the search were conference abstracts, doctoral dissertations, master’s theses, meta-analyses, systematic reviews, and studies conducted outside of the United States. Additional articles for the review were identified during the review process from the reference lists of the publications.
Abstracts were reviewed for articles that reported a study population inclusive of African American adolescents with asthma and that were related to self-management. Studies that used qualitative and other descriptive methods and cohort and randomized control trials were reviewed. Due to the limited number of articles found that exclusively focused on African Americans, the authors set a threshold for African American participants at 40% or greater for inclusion in this review.
Full papers were retrieved that met the inclusion criteria for a full review. Each author initially independently reviewed a selected number of papers and abstracted the study purpose, sample, study design, results, conclusions, and limitations. Subsequently, both authors reviewed in tandem and then discussed each selected manuscript to assure the appropriateness for inclusion. The subject matter was considered the priority for inclusion in the review. Study methods, sample size, and noted limitations were categorized but were not considered as a basis for exclusion. Thematic analysis was used to identify common themes across studies.
Results
We identified 23 papers that met our criteria (Table). Five common themes were found that related to barriers in disease self-management for African American adolescents: (a) knowledge and skills, (b) beliefs and attitudes, (c) personal/emotional factors, (d) caregivers, and (e) schools.
Knowledge and Skills
Adequate knowledge of the elements of asthma self-management is critical for achieving control of this condition. Asthma knowledge includes a basic understanding of the disease process and treatment strategies, an awareness of early signs and symptoms of worsening asthma, and an understanding of how to manage environmental triggers.4,5 Sin and colleagues conducted one of the earlier studies to examine the influence of asthma knowledge on asthma self-management in African American adolescents and found a significant positive association between knowledge and asthma self-management behaviors.12
Adherence to an asthma medication, especially inhaled corticosteroids (ICS), is one of the cornerstones to successful self-management of asthma.13,14 Consistent use of ICS therapy to control asthma symptoms and disease progression is often suboptimal in African American adolescents and tends to worsen as they age;15 studies have found lower adherence levels were more prominent in older African American adolescents and males.13,16 In a recent study of adolescents with persistent asthma who were prescribed daily ICS, youth with greater ICS knowledge as assessed using a standardized instrument demonstrated significantly higher adherence rates.13 Proper technique in the use of an inhaler is also important in medication administration. Asthma ICS medication delivery devices vary significantly and require different techniques for medication administration. However, inhaler device skills have been found to be very inadequate in high-risk African American adolescents.17 Thus, knowledge related to ICS therapy and proper skills in the use of inhaler devices is an important aspect of asthma self-management that have been found to be inadequate in African American Adolescents.
Interventions and programs geared to improving education may lead to improved self-management. Multisystemic Therapy-Health Care (MST-HC) is a tailored home-based intervention that includes knowledge and skill-building components. In a study of African American youth with poorly controlled asthma, the program was found to improve illness management.18 In addition, adolescents who complete formal asthma education programs demonstrate significantly higher scores in self-management than those youth who do not participate in these programs.13,19 Unfortunately, few African American teens report participation in an asthma education program.19 In a study of a motivational interviewing intervention to improve controller medication adherence for African American adolescents,14 youth reported gaining more knowledge about their asthma medications and were significantly more motivated to take their controller medications after participating in the intervention; however, while adherence to controller medications was greater than baseline, it was not significantly different.14 This study demonstrated the value of asthma education and the feasibility of a motivational intervention to support controller medication adherence. However, this study also demonstrated the complexity of medication adherence in that neither knowledge or motivation led to significant changes in medication adherence among African American adolescents.
Low health literacy can also act as a barrier to asthma self-management. Health literacy requires skills and knowledge that enable an individual to communicate, process, and understand basic health information that informs health decisions.20 Health literacy was found to be associated with indicators of poor disease self-management among urban African American adolescents in grades 9 through 12.21 In this study, health literacy was established using questions about confidence in filling out medical forms, self-reported problems with learning about the youth’s medical condition, and the need for assistance in reading hospital materials. Adolescents with poor health literacy scores were more likely to reside in a household with the following characteristics: mother with less than a high school education, Medicaid health insurance, family members with a body mass index exceeding the 85th percentile, and lack of rescue medication. Poor health literacy was most common among younger adolescents (ie, ninth graders). Some youth with poor health literacy also reported more emergency department visits, hospitalizations, and lower overall quality of life.21
Beliefs and Attitudes
Beliefs and attitudes towards taking asthma medications can act as barriers to adherence in the adolescent. African American adolescents often report the belief that ICS are not helpful or necessary.16,22-25 These beliefs have been correlated with a lack of understanding of the inflammatory mechanisms of asthma, reports of asthma attacks despite use of controller medications, fear of addiction to medications, and a belief that nontraditional interventions (eg, exercise) will work better to get rid of asthma or abate symptoms.16-19,22-24 African American adolescents also report beliefs that asthma will go away or get better as they age, and they are willing to forgo the use of controller medications based on these beliefs.24
African American adolescents often engage in asthma self-management independent of caregivers. These youth describe asthma self-management activities an annoyance and of low priority in part due to competing tasks and negative interactions with caregivers.25 During early adolescence asthma self-management is often suboptimal, and as youth age they become less observant regarding their asthma and are less likely to seek help.26 Adolescents’ beliefs and low prioritization of asthma self-management may contribute to forgetfulness and loss of inhalers, which are common reasons reported for poor adherence to ICS.16,23-26 Further, the role of caregivers during this period has often been overlooked. Caregivers of African American adolescents have been found to be stressed and overwhelmed with personal responsibilities and neighborhood conditions, leaving them little time to attend to the asthma self-management behavior of youth. Due to these contextual factors, interactions with chronically ill youth may be strained, resulting in negative interactions with youth related to asthma self-management. However, in an intervention study that used multisystemic therapy (an approach that targets the affected individual, family, and community), improvement in positive parenting behaviors related to asthma self-management contributed to improved ICS adherence by adolescents.27
Adolescents can perceive traditional asthma self-management as conflicting with their own personal and/or cultural beliefs. They may seek options beyond the use of medicine and have voiced preferences for behaviors that they believe will “strengthen their lungs” more naturally.24 An appreciation of how youth might use complementary/alternative medicine (CAM) as an adjunctive therapy or in place of evidence-based asthma care is important to understanding the potential effect on morbidity and mortality. Behaviors and beliefs about the use of CAM have not been well studied among urban African American adolescents with asthma. Only one study was found that assessed the use of CAM among a primarily urban African American adolescent population. In that study, 71% of the population reported using some form of CAM during the past 30 days.28 Prayer and relaxation were the most frequently used strategies in the management of asthma symptoms. Perceived efficacy of relaxation and prayer among teens who engaged in this form of CAM was 87% and 85%, respectively. Other CAM strategies included yoga, meditation, guided imagery, and biofeedback. When adolescents were asked if they shared their use of CAM in asthma management with a health care provider, most reported sharing the use of yoga and dietary changes but were least likely to share their use of prayer and guided imagery.28
Personal/Emotional Factors
African American adolescents have reported asthma as a limiting factor in terms of both physical and social activities. They perceive asthma as a burden to themselves and others (eg, peers, family, coaches).9,25 The burden of asthma is further exemplified in the emotional response to the symptoms of the disease and the self-management responsibilities. The need to prevent and respond to asthma symptoms is associated with being embarrassed, frustrated, angry, annoyed, worried, lonely, and isolated.9,11,25 Negative coping strategies by youth in response to psychosocial experiences include decisions to disregard or give minimal attention to asthma symptoms and to delay or not take prescribed medications. Students report ignoring asthma symptom management while engaging in physical activities to maintain a sense of normalcy among peers and as a way of dealing with perceptions by coaches or teachers that they are weak or in need of being protected.24,25
Negative thoughts and experiences can result in depressive disorders and poor quality of life. Depression is a common finding among urban youth with asthma.29,30 Youth diagnosed with asthma who have comorbid depression may benefit from interventions to improve self-management. In a secondary analysis from a Web-based asthma management intervention targeting African American adolescents, depression was found to have a modifying effect on the emotional domain of quality of life for youth in the intervention arm of the study. This finding indicates that participants who were depressed and who reported low levels of emotional quality of life benefited from the Web-based interventions that targeted self-management.31
Caregivers
Caregivers (especially moms) are a common source of support for the development and implementation of asthma self-management behaviors in adolescents.32 Caregivers sometimes hold beliefs similar to those of youth and believe the urban environment can act as a barrier to asthma management.9,25,32 They describe the complexity of asthma treatment plans, a lack of understanding of the disease process, and insensitivity of health care providers to their expressed needs along with the providers’ limited cultural awareness in the development of self-management plans.9,22,33 Caregivers describe how family finances, insurance gaps, access to care, and their own familial/cultural beliefs influence their decisions and ability to support their child’s asthma management.33 When faced with the cost of care they report instances of having to decide between necessities such as food and housing or co-pays for medications and office visits.22,33 They also report concerns about visits with multiple providers due to an inability to access their primary care provider, which can lead to delays in their child being diagnosed with asthma.22
Caregivers report a need to include culturally based practices, past experiences, and personal beliefs into the adolescents’ asthma management plan.22,32,33 In a small interview-based study of caregivers residing in 3 New Jersey public housing communities, caregivers reported preferring “familial” methods of controlling asthma (eg, restriction of activities; use of showers, steam, vaporizers, and nebulizers) over evidence-based recommendations. Many caregivers were confused or lacked knowledge about asthma action plans.33 Caregivers have also been found to lack adequate or accurate knowledge related to asthma medications and factors that improved or worsened asthma. While caregivers report a desire to help educate their teens by passing on what they know, their lack of adequate asthma knowledge may hamper their efforts and potentially worsen the teens’ asthma self-management.32
While African American caregivers often describe themselves as hypervigilant concerning their child’s asthma, they may report different information than their adolescent when both are questioned about asthma symptom experiences and functional status.34 Factors increasing the level of congruence between caregiver and teen asthma symptom reports were found to be related to the adolescents’ age and asthma disease classification. Symptom questionnaire responses of older teens and those with mild intermittent asthma were more likely to be similar to caregiver reports. The researchers concluded that clinicians and researchers may obtain reliable asthma symptom and functional status reports by asking the adolescent directly.34
Schools
Caregivers and adolescents describe schools as a threat to self-management and the overall health of youth with asthma.9,32 They perceive that a lack of knowledge by staff, teachers, and coaches contributes to inattentiveness or disbelief in the credibility of reported asthma symptoms by youth.11,23 These misperceptions and the lack of attentiveness by adults in the school may pose safety and health issues for African American youth.9,25,33,34 For example, adolescents report pressure from teacher, coaches, and peers in school settings to partake in sports and/or gym classes. Youth want to identify with healthy peers and thus often choose not to take asthma medications during such activities or opt to continue participating while being compromised by airway obstruction. Of great concern were reports by caregivers and teens of not being allowed to call a parent for support or retrieve their medications when needed for asthma symptoms.32
Future Research and Practice Implications
In this review, we identified 5 common themes around barriers to asthma self-management for African American adolescents (knowledge and skills, beliefs and attitudes, personal/emotional factors, caregivers, and schools). Caregivers, especially mothers, play a pivotal role in the development of effective asthma self-management behaviors. Depsite good intentions, there is evidence of caregivers passing on ineffective experiential and culturally based beliefs and practices to their adolescents that can negatively influence self-care behaviors.13,28,38 Studies are needed to further investigate these findings among caregivers as their beliefs and practices for asthma self-management have been found to coexist among adolescents. Studies that investigate how to incorporate caregiver asthma knowledge, cultural beliefs and behaviors in developing self-management interventions have the potential to positively influence asthma outcomes among African American adolescents.27 The unique cultural beliefs, contextual environmental, and social disparities faced by African American caregivers should not be neglected.
African American adolescents, like adolescents in other racial or ethnic groups, desire to be autonomous in their asthma self-management. However, as adolescents age their adherence behaviors often decline. This may suggest a need for a longer transition period to self-management that extends into emerging adulthood (18-25 years). While youth want to feel supported, there appears to be a fine line between receiving needed support and what youth describe as “nagging” behaviors by adults. Additional investigations into how asthma responsibilities are transitioned from the parent to youth and how best to support the development and maintenance of related behaviors and skills are warranted. In addition, teens described problems related to communicating with health care providers, noting a lack of clarity in explanations received about how to manage their asthma. Some teens believed the communication challenges were based on beliefs and biases held by providers that African American youth had limited capacities for self-management.9 There is a need to better understand interactions among African American adolescents, parents, and clinicians so that communication and transitioning asthma care to the youth will produce optimal health outcomes.
According to asthma guidelines, the patient-provider relationship is essential to effective asthma self-management.4,5 However, there is little mention in the literature of team-based care. Clinicians such as physicians, physician assistants, and nurse practitioners provide direct care to adolescents in terms of disease management and the overall effectiveness of treatment plans. African American youth demonstrate a need for asthma education that is comprehensive and that is contextualized to their daily lives. A team-based approach to care that includes social workers and community health workers may help to extend the reach of clinicians. Follow-up times with families and youth between office visits can be used to support adolescents to develop asthma self-management and allow them a safe space to describe frustrations and other emotions that contribute to their desire to be disease-free.
Summary
Asthma is a chronic disease that is often more severe and difficult to manage in African American adolescents. While African American adolescents describe developmental needs like those of other youth, cultural beliefs and contextual experiences influence their self-care management in unique ways. Opportunities exist to better understand the needs of African American adolescents and to help them successfully gain the knowledge, skills, and behaviors needed to effectively engage in self-management of their asthma.
Corresponding author: Wanda Gibson-Scipio, PhD, FNP-BC, FAANP, 5557 Cass Ave., 346 Cohn Building, Detroit, MI 48324; gibsonsc@wayne.edu.
Financial disclosures: None.
From Wayne State University, Detroit, MI (Dr. Gibson-Scipio), and the University of Texas Rio Grande Valley, Edinburg, TX (Dr. Krouse).
Abstract
- Objective: To review the literature on barriers to asthma self-management amo
ng African American adolescents. - Methods: Review of the literature.
- Results: Asthma self-management barriers experienced by African American adolescents are often related to developmental needs, lack of knowledge, and personal perspectives and experiences. Adolescents find managing their symptoms and adhering to prescriptive therapies a burden and desire to be more like healthy peers. As they struggle to identify with peers, they may engage in risky behaviors such as ignoring symptoms and delaying treatment, thus leading to poorer asthma control and health outcomes. African American adolescents struggle with perceptions of racial biases from health care providers and teachers that interfere with self-management behaviors. They also describe the influence of culturally based practices learned from caregivers that contribute to their misconceptions and inadequate skills in effectively managing their asthma.
- Conclusion: Researchers should seek to develop interventions to address the unique contextual and culturally based needs of African American adolescents that support the development of effective asthma self-management behaviors. This may include making use of family members (especially mothers) and extended support for self-management during this period of rapid growth and transition. Health care providers should consider a team-based approach to the adolescent patient. Such an approach should be grounded in recommendations from national guidelines that suggest a patient-centered approach to care that includes a partnership between the patient and the provider to address unique barriers to effective self-management.
Keywords: youth; caregiver; drug-therapy; self-efficacy; disease-management; patient-centered care.
Effective asthma self-management by urban African American adolescents is a critical aspect of care that should be addressed with vigilance due to the persistent disparities in disease prevalence, morbidity, and mortality compared to Caucasians.1-3 The overarching goal of asthma self-management is to achieve symptom control, maintain normal activity levels, and minimize future risk of exacerbations and medication side effects.4,5 Best practices for asthma self-management begin with a partnership between health care providers and clients (including parent/caregiver). This relationship should help affected individuals gain asthma control based on knowledge of their disease and treatment options, confidence and skills in trigger avoidance, medication administration, and management of acute exacerbations.4,5
Among youth aged 18 years and younger, African Americans have the highest asthma prevalence rates of all racial and ethnic groups, and between 2001 and 2009 asthma prevalence rates rose by 50% among African American youth.6 As of 2015, prevalence rates for asthma among African American youth were 13.4%, as compared to 7.4% for white youth.7 African American youth have been found to have more frequent asthma exacerbations and related school absences than white youth.8 Furthermore, African American youth younger than 18 years are more likely to be admitted to the hospital for asthma and are 10 times more likely to die from asthma compared to non-Hispanic white children.6
Urban African American adolescents with asthma are particularly vulnerable to poor asthma self-management due to the complexity of the disease in this population.3 African American youth must deal with multiple adverse environmental conditions, lack of knowledge or disbelief concerning effective disease self-management strategies, variable access and quality of care, and the psychosocial dynamics of being young while having a chronic disease.2,3,9-11 It is important to understand and address barriers to successful asthma self-management during adolescence, as behaviors developed during this stage of life often persist into adulthood.9 In this article, we review the literature on barriers to asthma self-management among African American adolescents and offer suggestions on clinical strategies for improving self-management in this vulnerable population.
Methods
The initial search strategy was developed in collaboration with an experienced librarian. Keywords, MeSH terms, and potential databases were identified. Keywords included urban, African American, adolescent, asthma, self-management, and barriers. These terms were expanded based on search results and a review of abstracts that fit the intent of our review. The search was limited to U.S. studies published between 2005 and 2017. Excluded from the search were conference abstracts, doctoral dissertations, master’s theses, meta-analyses, systematic reviews, and studies conducted outside of the United States. Additional articles for the review were identified during the review process from the reference lists of the publications.
Abstracts were reviewed for articles that reported a study population inclusive of African American adolescents with asthma and that were related to self-management. Studies that used qualitative and other descriptive methods and cohort and randomized control trials were reviewed. Due to the limited number of articles found that exclusively focused on African Americans, the authors set a threshold for African American participants at 40% or greater for inclusion in this review.
Full papers were retrieved that met the inclusion criteria for a full review. Each author initially independently reviewed a selected number of papers and abstracted the study purpose, sample, study design, results, conclusions, and limitations. Subsequently, both authors reviewed in tandem and then discussed each selected manuscript to assure the appropriateness for inclusion. The subject matter was considered the priority for inclusion in the review. Study methods, sample size, and noted limitations were categorized but were not considered as a basis for exclusion. Thematic analysis was used to identify common themes across studies.
Results
We identified 23 papers that met our criteria (Table). Five common themes were found that related to barriers in disease self-management for African American adolescents: (a) knowledge and skills, (b) beliefs and attitudes, (c) personal/emotional factors, (d) caregivers, and (e) schools.
Knowledge and Skills
Adequate knowledge of the elements of asthma self-management is critical for achieving control of this condition. Asthma knowledge includes a basic understanding of the disease process and treatment strategies, an awareness of early signs and symptoms of worsening asthma, and an understanding of how to manage environmental triggers.4,5 Sin and colleagues conducted one of the earlier studies to examine the influence of asthma knowledge on asthma self-management in African American adolescents and found a significant positive association between knowledge and asthma self-management behaviors.12
Adherence to an asthma medication, especially inhaled corticosteroids (ICS), is one of the cornerstones to successful self-management of asthma.13,14 Consistent use of ICS therapy to control asthma symptoms and disease progression is often suboptimal in African American adolescents and tends to worsen as they age;15 studies have found lower adherence levels were more prominent in older African American adolescents and males.13,16 In a recent study of adolescents with persistent asthma who were prescribed daily ICS, youth with greater ICS knowledge as assessed using a standardized instrument demonstrated significantly higher adherence rates.13 Proper technique in the use of an inhaler is also important in medication administration. Asthma ICS medication delivery devices vary significantly and require different techniques for medication administration. However, inhaler device skills have been found to be very inadequate in high-risk African American adolescents.17 Thus, knowledge related to ICS therapy and proper skills in the use of inhaler devices is an important aspect of asthma self-management that have been found to be inadequate in African American Adolescents.
Interventions and programs geared to improving education may lead to improved self-management. Multisystemic Therapy-Health Care (MST-HC) is a tailored home-based intervention that includes knowledge and skill-building components. In a study of African American youth with poorly controlled asthma, the program was found to improve illness management.18 In addition, adolescents who complete formal asthma education programs demonstrate significantly higher scores in self-management than those youth who do not participate in these programs.13,19 Unfortunately, few African American teens report participation in an asthma education program.19 In a study of a motivational interviewing intervention to improve controller medication adherence for African American adolescents,14 youth reported gaining more knowledge about their asthma medications and were significantly more motivated to take their controller medications after participating in the intervention; however, while adherence to controller medications was greater than baseline, it was not significantly different.14 This study demonstrated the value of asthma education and the feasibility of a motivational intervention to support controller medication adherence. However, this study also demonstrated the complexity of medication adherence in that neither knowledge or motivation led to significant changes in medication adherence among African American adolescents.
Low health literacy can also act as a barrier to asthma self-management. Health literacy requires skills and knowledge that enable an individual to communicate, process, and understand basic health information that informs health decisions.20 Health literacy was found to be associated with indicators of poor disease self-management among urban African American adolescents in grades 9 through 12.21 In this study, health literacy was established using questions about confidence in filling out medical forms, self-reported problems with learning about the youth’s medical condition, and the need for assistance in reading hospital materials. Adolescents with poor health literacy scores were more likely to reside in a household with the following characteristics: mother with less than a high school education, Medicaid health insurance, family members with a body mass index exceeding the 85th percentile, and lack of rescue medication. Poor health literacy was most common among younger adolescents (ie, ninth graders). Some youth with poor health literacy also reported more emergency department visits, hospitalizations, and lower overall quality of life.21
Beliefs and Attitudes
Beliefs and attitudes towards taking asthma medications can act as barriers to adherence in the adolescent. African American adolescents often report the belief that ICS are not helpful or necessary.16,22-25 These beliefs have been correlated with a lack of understanding of the inflammatory mechanisms of asthma, reports of asthma attacks despite use of controller medications, fear of addiction to medications, and a belief that nontraditional interventions (eg, exercise) will work better to get rid of asthma or abate symptoms.16-19,22-24 African American adolescents also report beliefs that asthma will go away or get better as they age, and they are willing to forgo the use of controller medications based on these beliefs.24
African American adolescents often engage in asthma self-management independent of caregivers. These youth describe asthma self-management activities an annoyance and of low priority in part due to competing tasks and negative interactions with caregivers.25 During early adolescence asthma self-management is often suboptimal, and as youth age they become less observant regarding their asthma and are less likely to seek help.26 Adolescents’ beliefs and low prioritization of asthma self-management may contribute to forgetfulness and loss of inhalers, which are common reasons reported for poor adherence to ICS.16,23-26 Further, the role of caregivers during this period has often been overlooked. Caregivers of African American adolescents have been found to be stressed and overwhelmed with personal responsibilities and neighborhood conditions, leaving them little time to attend to the asthma self-management behavior of youth. Due to these contextual factors, interactions with chronically ill youth may be strained, resulting in negative interactions with youth related to asthma self-management. However, in an intervention study that used multisystemic therapy (an approach that targets the affected individual, family, and community), improvement in positive parenting behaviors related to asthma self-management contributed to improved ICS adherence by adolescents.27
Adolescents can perceive traditional asthma self-management as conflicting with their own personal and/or cultural beliefs. They may seek options beyond the use of medicine and have voiced preferences for behaviors that they believe will “strengthen their lungs” more naturally.24 An appreciation of how youth might use complementary/alternative medicine (CAM) as an adjunctive therapy or in place of evidence-based asthma care is important to understanding the potential effect on morbidity and mortality. Behaviors and beliefs about the use of CAM have not been well studied among urban African American adolescents with asthma. Only one study was found that assessed the use of CAM among a primarily urban African American adolescent population. In that study, 71% of the population reported using some form of CAM during the past 30 days.28 Prayer and relaxation were the most frequently used strategies in the management of asthma symptoms. Perceived efficacy of relaxation and prayer among teens who engaged in this form of CAM was 87% and 85%, respectively. Other CAM strategies included yoga, meditation, guided imagery, and biofeedback. When adolescents were asked if they shared their use of CAM in asthma management with a health care provider, most reported sharing the use of yoga and dietary changes but were least likely to share their use of prayer and guided imagery.28
Personal/Emotional Factors
African American adolescents have reported asthma as a limiting factor in terms of both physical and social activities. They perceive asthma as a burden to themselves and others (eg, peers, family, coaches).9,25 The burden of asthma is further exemplified in the emotional response to the symptoms of the disease and the self-management responsibilities. The need to prevent and respond to asthma symptoms is associated with being embarrassed, frustrated, angry, annoyed, worried, lonely, and isolated.9,11,25 Negative coping strategies by youth in response to psychosocial experiences include decisions to disregard or give minimal attention to asthma symptoms and to delay or not take prescribed medications. Students report ignoring asthma symptom management while engaging in physical activities to maintain a sense of normalcy among peers and as a way of dealing with perceptions by coaches or teachers that they are weak or in need of being protected.24,25
Negative thoughts and experiences can result in depressive disorders and poor quality of life. Depression is a common finding among urban youth with asthma.29,30 Youth diagnosed with asthma who have comorbid depression may benefit from interventions to improve self-management. In a secondary analysis from a Web-based asthma management intervention targeting African American adolescents, depression was found to have a modifying effect on the emotional domain of quality of life for youth in the intervention arm of the study. This finding indicates that participants who were depressed and who reported low levels of emotional quality of life benefited from the Web-based interventions that targeted self-management.31
Caregivers
Caregivers (especially moms) are a common source of support for the development and implementation of asthma self-management behaviors in adolescents.32 Caregivers sometimes hold beliefs similar to those of youth and believe the urban environment can act as a barrier to asthma management.9,25,32 They describe the complexity of asthma treatment plans, a lack of understanding of the disease process, and insensitivity of health care providers to their expressed needs along with the providers’ limited cultural awareness in the development of self-management plans.9,22,33 Caregivers describe how family finances, insurance gaps, access to care, and their own familial/cultural beliefs influence their decisions and ability to support their child’s asthma management.33 When faced with the cost of care they report instances of having to decide between necessities such as food and housing or co-pays for medications and office visits.22,33 They also report concerns about visits with multiple providers due to an inability to access their primary care provider, which can lead to delays in their child being diagnosed with asthma.22
Caregivers report a need to include culturally based practices, past experiences, and personal beliefs into the adolescents’ asthma management plan.22,32,33 In a small interview-based study of caregivers residing in 3 New Jersey public housing communities, caregivers reported preferring “familial” methods of controlling asthma (eg, restriction of activities; use of showers, steam, vaporizers, and nebulizers) over evidence-based recommendations. Many caregivers were confused or lacked knowledge about asthma action plans.33 Caregivers have also been found to lack adequate or accurate knowledge related to asthma medications and factors that improved or worsened asthma. While caregivers report a desire to help educate their teens by passing on what they know, their lack of adequate asthma knowledge may hamper their efforts and potentially worsen the teens’ asthma self-management.32
While African American caregivers often describe themselves as hypervigilant concerning their child’s asthma, they may report different information than their adolescent when both are questioned about asthma symptom experiences and functional status.34 Factors increasing the level of congruence between caregiver and teen asthma symptom reports were found to be related to the adolescents’ age and asthma disease classification. Symptom questionnaire responses of older teens and those with mild intermittent asthma were more likely to be similar to caregiver reports. The researchers concluded that clinicians and researchers may obtain reliable asthma symptom and functional status reports by asking the adolescent directly.34
Schools
Caregivers and adolescents describe schools as a threat to self-management and the overall health of youth with asthma.9,32 They perceive that a lack of knowledge by staff, teachers, and coaches contributes to inattentiveness or disbelief in the credibility of reported asthma symptoms by youth.11,23 These misperceptions and the lack of attentiveness by adults in the school may pose safety and health issues for African American youth.9,25,33,34 For example, adolescents report pressure from teacher, coaches, and peers in school settings to partake in sports and/or gym classes. Youth want to identify with healthy peers and thus often choose not to take asthma medications during such activities or opt to continue participating while being compromised by airway obstruction. Of great concern were reports by caregivers and teens of not being allowed to call a parent for support or retrieve their medications when needed for asthma symptoms.32
Future Research and Practice Implications
In this review, we identified 5 common themes around barriers to asthma self-management for African American adolescents (knowledge and skills, beliefs and attitudes, personal/emotional factors, caregivers, and schools). Caregivers, especially mothers, play a pivotal role in the development of effective asthma self-management behaviors. Depsite good intentions, there is evidence of caregivers passing on ineffective experiential and culturally based beliefs and practices to their adolescents that can negatively influence self-care behaviors.13,28,38 Studies are needed to further investigate these findings among caregivers as their beliefs and practices for asthma self-management have been found to coexist among adolescents. Studies that investigate how to incorporate caregiver asthma knowledge, cultural beliefs and behaviors in developing self-management interventions have the potential to positively influence asthma outcomes among African American adolescents.27 The unique cultural beliefs, contextual environmental, and social disparities faced by African American caregivers should not be neglected.
African American adolescents, like adolescents in other racial or ethnic groups, desire to be autonomous in their asthma self-management. However, as adolescents age their adherence behaviors often decline. This may suggest a need for a longer transition period to self-management that extends into emerging adulthood (18-25 years). While youth want to feel supported, there appears to be a fine line between receiving needed support and what youth describe as “nagging” behaviors by adults. Additional investigations into how asthma responsibilities are transitioned from the parent to youth and how best to support the development and maintenance of related behaviors and skills are warranted. In addition, teens described problems related to communicating with health care providers, noting a lack of clarity in explanations received about how to manage their asthma. Some teens believed the communication challenges were based on beliefs and biases held by providers that African American youth had limited capacities for self-management.9 There is a need to better understand interactions among African American adolescents, parents, and clinicians so that communication and transitioning asthma care to the youth will produce optimal health outcomes.
According to asthma guidelines, the patient-provider relationship is essential to effective asthma self-management.4,5 However, there is little mention in the literature of team-based care. Clinicians such as physicians, physician assistants, and nurse practitioners provide direct care to adolescents in terms of disease management and the overall effectiveness of treatment plans. African American youth demonstrate a need for asthma education that is comprehensive and that is contextualized to their daily lives. A team-based approach to care that includes social workers and community health workers may help to extend the reach of clinicians. Follow-up times with families and youth between office visits can be used to support adolescents to develop asthma self-management and allow them a safe space to describe frustrations and other emotions that contribute to their desire to be disease-free.
Summary
Asthma is a chronic disease that is often more severe and difficult to manage in African American adolescents. While African American adolescents describe developmental needs like those of other youth, cultural beliefs and contextual experiences influence their self-care management in unique ways. Opportunities exist to better understand the needs of African American adolescents and to help them successfully gain the knowledge, skills, and behaviors needed to effectively engage in self-management of their asthma.
Corresponding author: Wanda Gibson-Scipio, PhD, FNP-BC, FAANP, 5557 Cass Ave., 346 Cohn Building, Detroit, MI 48324; gibsonsc@wayne.edu.
Financial disclosures: None.
1. Akinbami LJ, Moorman JE, Bailey C, et al. Trends in asthma prevalence, health care use, and mortality in the United States, 2001-2010. NCHS Data Brief. 2012:1-8.
2. Bruzzese JM, Bonner S, Vincent EJ, et al. Asthma education: the adolescent experience. Patient Educ Couns. 2004;55:396-406.
3. Bryant-Stephens T. Asthma disparities in urban environments. J Allergy Clin Immunol. 2009;123:1199-1206.
4. National Heart, Lung, and Blood Institute. National Asthma Education and Prevention Program. Expert Panel Report 3: Guidelines for the Diagnosis and Management of Asthma. Bethesda, MD: National Heart, Lung, and Blood Institute; 2007.
5. GINA. Global strategy for asthma management and prevention. 2017. www.ginaasthma.org. Accessed Dec 15, 2017.
6. Centers for Disease Control and Prevention. Vital signs. 2011. https://www.cdc.gov/vitalsigns/asthma/index.html. Accessed December 15, 2017.
7. Centers for Disease Control and Prevention. 2015 National Health Interview Survey (NHIS) Data. National Center for Environmental Health, 2017. https://www.cdc.gov/asthma/nhis/2015/table4-1.htm. Accessed December 15, 2017.
8. Gupta RS, Carrión-Carire V, Weiss KB. The widening black/white gap in asthma hospitalizations and mortality. J Allergy Clin Immunol. 2006;117:351-358.
9. Evans-Agnew R. Asthma management disparities: a photovoice investigation with African American youth. J Sch Nurs. 2016;32:99-111.
10. Naar-King S, Ellis, D, Kolmodin, K. Feasibility of adapting multisystemic therapy to improve illness management behaviors and reduce asthma morbidity in high risk African American youth: a case series. J Child Fam Stud. 2009;18:564-573.
11. Rhee H, Wenzel J, Steeves RH. Adolescents’ psychosocial experiences living with asthma: a focus group study. J Pediatr Health Care. 2007;21:99-107.
12. Sin MK, Kang DH, Weaver M. Relationships of asthma knowledge, self-management, and social support in African American adolescents with asthma. Int J Nurs Stud. 2005;42:307-313.
13. Mosnaim G, Li H, Martin M, et al. Factors associated with levels of adherence to inhaled corticosteroids in minority adolescents with asthma. Ann Allergy Asthma Immunol. 2014;112:116-120.
14. Riekert KA, Borrelli B, Bilderback A, Rand CS. The development of a motivational interviewing intervention to promote medication adherence among inner-city, African American adolescents with asthma. Patient Educ Couns. 2011;82:117-122.
15. Bruzzese JM, Stepney C, Fiorino EK, et al. Asthma self-management is sub-optimal in urban Hispanic and African American/black early adolescents with uncontrolled persistent asthma. J Asthma. 2012;49:90-97.
16. Naimi DR, Freedman TG, Ginsburg KR, et al. Adolescents and asthma: why bother with our meds? J Allergy Clin Immunol. 2009;123:1335-1341.
17. Naar-King S, Lam P, Ellis D, et al. Asthma medication device skills in high-risk African American adolescents. J Asthma. 2013;50:579-582.
18. Ellis DA, King P, Naar-King S. Mediators of treatment effects in a randomized clinical trial of multisystemic therapy-health care in adolescents with poorly controlled asthma: disease knowledge and device use skills. J Pediatr Psychol. 2016;41:522-530.
19. Crowder SJ, Hanna KM, Carpenter JS, Broome ME. Factors associated with asthma self-management in African American adolescents. J Pediatric Nurs. 2015;30:e35-e43.
20. U.S. Department of Health and Human Services. Healthy people 2010: understanding and improving health. 2nd ed. Washington (DC): U.S. Government Printing Office; November 2000.
21. Valerio MA, Peterson EL, Wittich AR, Joseph CLM. Examining health literacy among urban African-American adolescents with asthma. J Asthma. 2016;53:1041-1047.
22. Laster N, Holsey CN, Shendell DG, et al. Barriers to asthma management among urban families: caregiver and child perspectives. J Asthma. 2009;46:731-739.
23. Ayala GX, Miller D, Zagami E, et al. Asthma in middle schools: what students have to say about their asthma. J Sch Health. 2006;76:208-214.
24. Gibson-Scipio W, Gourdin D, Krouse, HJ. Asthma self-management goals, beliefs and behaviors of urban African American adolescents prior to transitioning to adult health care. J Pediatric Nurs. 2015;30:e53-e61.
25. Blaakman SW, Cohen A, Fagnano M, Halterman JS. Asthma medication adherence among urban teens: a qualitative analysis of barriers, facilitators and experiences with school-based care. J Asthma. 2014;51:522-529.
26. Bruzzese JM, Idalski Carcone A, Lam P, et al. Adherence to asthma medication regimens in urban African American adolescents: application of self-determination theory. Health Psychol. 2014;33:461-464.
27. Ellis DA, King P, Naar-King S, et al. Effects of family treatment on parenting beliefs among caregivers of youth with poorly controlled asthma. J Dev Behav Pediatr. 2014;35:486-493.
28. Cotton S, Luberto CM, Yi MS, Tsevat J. Complementary and alternative medicine behaviors and beliefs in urban adolescents with asthma. J Asthma. 2011;48:531-538.
29. Bahreinian S, Ball GDC, Colman I, et al. Depression is more common in girls with nonatopic asthma. Chest. 2011;140:1138-1145.
30. Bender BG. Risk taking, depression, adherence, and symptom control in adolescents and young adults with asthma. Am J Respir Crit Care Med. 2006;173:953-957.
31. Guglani L, Havstad SL, Johnson CC, et al. Effect of depressive symptoms on asthma intervention in urban teens. Ann Allergy Asthma Immunol. 2012;109:237-242.
32. Gibson-Scipio W, Krouse HJ. Goals, beliefs, and concerns of urban caregivers of middle and older adolescents with asthma. J Asthma. 2013;50:242-249.
33. Wagner F, Steefel L. Beliefs regarding asthma management relating to asthma action plans (AAPs) of African American caregivers residing in Newark, New Jersey public housing communities. J Pediatr Nurs. 2017;36:92-97.
34. Houle CR, Joseph CL, Caldwell CH, et al. Congruence between urban adolescent and caregiver responses to questions about the adolescent’s asthma. J Urban Health. 2011;88:30-40.
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29. Bahreinian S, Ball GDC, Colman I, et al. Depression is more common in girls with nonatopic asthma. Chest. 2011;140:1138-1145.
30. Bender BG. Risk taking, depression, adherence, and symptom control in adolescents and young adults with asthma. Am J Respir Crit Care Med. 2006;173:953-957.
31. Guglani L, Havstad SL, Johnson CC, et al. Effect of depressive symptoms on asthma intervention in urban teens. Ann Allergy Asthma Immunol. 2012;109:237-242.
32. Gibson-Scipio W, Krouse HJ. Goals, beliefs, and concerns of urban caregivers of middle and older adolescents with asthma. J Asthma. 2013;50:242-249.
33. Wagner F, Steefel L. Beliefs regarding asthma management relating to asthma action plans (AAPs) of African American caregivers residing in Newark, New Jersey public housing communities. J Pediatr Nurs. 2017;36:92-97.
34. Houle CR, Joseph CL, Caldwell CH, et al. Congruence between urban adolescent and caregiver responses to questions about the adolescent’s asthma. J Urban Health. 2011;88:30-40.