Perceptions and experiences underlying self-management and reporting of symptoms in teens with asthma

Abstract

Background Teens often have inadequate asthma self-management and control. However, little is known of their perceptions of or rationales for self-management behaviors. Objectives To explore how teens self-manage asthma, including experiences, perceptions, responses to and reporting of symptoms. Methods A case-based, qualitative-descriptive design was used. Data were collected from minority and non-minority teens with controlled and uncontrolled asthma and their respective parents (N=28). There were four data-collection points, including: (1) a primary teen interview; (2) parent interview; (3) two-week self-management voice-diary; and (4) follow-up teen interview, incorporating symptom-response card-sorting to map symptoms and associated self-management responses. Seventy data sources were included in the analysis. Results Teens thought of their asthma symptoms as normal or unusual relative to their personal baseline symptom pattern; Those with uncontrolled asthma normalized higher levels of asthma symptoms than their counterparts with controlled asthma. Second, teens’ decisions to treat symptoms of asthma with rescue medication were based on perceived benefits, burdens and accessibility of treatment balanced against perceived normalcy of symptoms. Teens with uncontrolled asthma had substantially higher treatment thresholds and delayed responses to symptoms compared to controlled peers. Third, teens never reported perceived normal symptoms of asthma to parents or providers, who were thus only aware of unusual or visible/audible symptoms. Conclusions Teen’s perceptions of symptoms and understanding of what is normal is the basis for self-management decisions. Improving self-management will likely entail modifying perceptions of symptoms and benefits/burdens of treatment to achieve healthier self-management patterns.

Comparing Asthma Control Questionnaire (ACQ) and National Asthma Education and Prevention Program (NAEPP) asthma control criteria

“…Furthermore, while assessing ED visits and hospitalization is undoubtedly essential, our findings suggest that absence of acute healthcare utilization might not be a sufficient indicator of well controlled asthma, particularly in adolescent patients who tend to tolerate high levels of symptoms without reporting or responding. 33,34 …”

Barriers and facilitators to self‐management of asthma in adolescents: An interview study to inform development of a novel intervention

“…For example, a recent qualitative study explored self‐management of asthma in adolescents and included parent perspectives. Adolescents often neglected to report normal asthma symptoms to parents, which was linked to subsequent lack of symptom reporting to healthcare professionals (HCPs) . Much of the existing literature is focused on the adolescent yet we argue that any successful intervention to improve their self‐management would benefit from understanding the current perspective of parents and HCPs.…”

“…Adolescents often neglected to report normal asthma symptoms to parents, which was linked to subsequent lack of symptom reporting to healthcare professionals (HCPs). 7 Much of the existing literature is focused on the adolescent yet we argue that any successful intervention to improve their self-management would benefit from understanding the current perspective of parents and HCPs. Firstly because they may have a different understanding of the factors that influence adolescents self-management, compared to adolescents themselves, and secondly to understand whether the support that parents and HCPs provide is aligned with the adolescent's needs and expectations.…”

Asthma control in London secondary school children

“…A further possible reason for non-adherence is over-estimation of control. Mammen et al [15] reported that teenagers with uncontrolled asthma tend to normalise their symptoms and have higher treatment thresholds. Similarly, we found that in students with suboptimal control, 42.3% considered that their asthma was either 'well' or 'completely controlled' .…”