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.