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) 2-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.

Keywords:

• Adolescent
• asthma
• medication compliance
• qualitative research
• self-management
• symptom assessment

Acknowledgements

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or Sigma Theta Tau international. The authors also extend their thanks to the 30 teens and parents who participated in this study.

Declaration of interest

The authors report no conflicts of interest.

Funding

Research reported in this publication was supported by the National Institute Of Nursing Research of the National Institutes of Health under Award Number F31NR014952. This research was also partially supported by Sigma Theta Tau Epsilon Xi.