Qualitative Research in Teens with Asthma: Understanding Patterns of Symptoms and Self-Management

Background: Self-management is a central component of controlling disease and preventing morbidity and mortality (CDC, 2011; Rand et al., 2012). Many teens have suboptimal asthma control, which is often attributed to poor self-management (Bruzzese et al., 2012; Rhee, Belyea, Ciurzynski, & Brasch, 2009). Thus it becomes important to understand not only how teens self-manage their asthma, but their underlying process of rationales and responses (Mammen & Rhee, 2012). In this study we employed a combination of semi structured interviews, self-management voice-diaries, and card sorting techniques to map teens' unique patterns of symptoms and responses and facilitate in-depth discussion of their asthma self-management. 

Study Objectives: To explore teens’ experiences of asthma self-management across life-contexts, and to describe how teens manage their asthma and what is important to them.

Design:  This study used a case-based qualitative-descriptive design with purposive and criterion-based sampling (well-controlled v. not-well-controlled teens; minority v. non-minority teens).

Setting:  Teen-parent dyads were recruited from prior study subjects, the community, Emergency Department, and Pediatric Pulmonary Department of a large urban hospital in Rochester, NY.

 Participants: A total of 14 teen-parent dyads, consisting of minority and non-minority teenagers (aged 13-17 years; n=14) with well-controlled or not well-controlled persistent asthma, and their parents (n=14), participated in the study.

Methods:  Initial data were collected from teen/parent dyads using separate semi-structured interviews with each teen and parent.  Next, teens completed a 2-week digital voice-diary on asthma self-management describing their daily asthma symptoms and experiences, responses, rationales, and thoughts related to their asthma on that day.  Lastly a follow up open-ended interview with each teen, incorporating an event-response card sorting technique to map the teen’s spectrums of asthma symptoms and associated self-management behaviors, was conducted to further explore experiences, perceptions, and patterns of asthma self-management.  Data from recorded interviews were transcribed, verified, uploaded into ATLAS.ti, and analyzed using open, process, and pattern coding.

Results: Data indicate that teens have symptom thresholds for responding to asthma symptoms. Symptom thresholds are defined as the point at which asthma symptoms are considered important and require an active self-management response. Symptoms falling below a teen’s threshold were considered low-level, unimportant, and required no response other than waiting.  Symptom thresholds were specific to each individual and appeared to correspond with baseline level of symptoms.  Teens with higher frequency and severity of baseline asthma symptoms (i.e. not well-controlled) reported higher symptom thresholds (i.e. delayed response) for reacting to symptoms than teens with better-controlled asthma.  The most common symptom threshold for teens in this study was the point at which asthma symptoms interfered with activities. 

Second, teens with asthma felt that not all asthma symptoms were important.  Symptoms that occurred on a regular basis (i.e. daily) were not viewed as serious and were referred to as “normal symptoms.” Normal symptoms were different for each teen and corresponded with baseline level of control.  The poorly controlled teens in our study considered daily wheezing to be a normal symptom, whereas well-controlled teens did not.  Because normal symptoms were not seen as serious, they were typically overlooked, ignored, forgotten, and were not reported to parents or healthcare providers.  Only high-level and unusual symptoms exceeding the symptom threshold were recalled and reported.

Third, clinical definitions of controlled asthma did not correspond well with teens' understandings of controlled asthma.  Having "controlled" asthma for a teen meant not having symptoms of asthma that exceeded their "normal" symptoms. Most teens in the study felt that their asthma was controlled as long they could get the symptoms to go away—either by waiting or by using a rescue inhaler.  Well-controlled teens had lower symptom thresholds for perceiving asthma to be uncontrolled.  Not-well-controlled teens accepted a higher level of symptom frequency within their paradigm of controlled asthma.

Discussion: Our data extend upon prior research, which indicate teens tend to underreport and ignore asthma symptoms, by suggesting that the threshold for reporting and responding to symptoms hinges upon teens' perception of the seriousness of symptoms and understanding of what is normal (Britto et al., 2011; Rhee, Belyea, & Elward, 2008). This means that teens with daily symptoms of asthma may report having no asthma symptoms because they have not exceeded their symptom threshold for perceived normal symptoms.  Researchers and clinicians working with this population may need to probe more specifically into teen’s asthma symptoms to understand which are likely to be overlooked and not reported.  Identifying teen’s unique sequences of symptoms and responses may assist clinicians and researchers in identifying specific areas of need and tailoring asthma education accordingly. Identification of symptom thresholds can contribute to better understanding of patients’ perspectives and experiences, assist in developing targeted self-management interventions, and ultimately lead to improved health outcomes.