Barriers to Self-Management in African American Adolescents with Asthma

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