Methods: Participants were part of a larger, ongoing randomized controlled trial testing the effectiveness of an asthma Emergency Department (ED) and home-based environmental control intervention for children with frequent ED visits. Focus group methodology was selected to engage parents on a range of topics salient to asthma management from the caregiver perspective and to enhance self-efficacy through group participation and support. Three separate focus groups facilitated by study staff lasted an average of 90 minutes and produced an average of 30 pages in transcription data.
Constant comparison techniques were used to independently evaluate the emerging themes and sub-themes in relation to the transcript data, and to revise and reorganize these themes (Corbin & Strauss, 2008). The coding scheme and thematic definitions were refined by group consensus in a series of data meetings. Triangulation across disciplines (social work, community health, nursing) and the use of an outside reviewer with clinical and research expertise in high-risk pediatric asthma increased trustworthiness of the findings.
Results: Caregivers (N=14; Mean age=31 years) were predominantly the biological mother (92.3%), single (84.6%), and living in poverty (70% reported annual household income ≤$30,000). Children (Mean age=8 years) were African American (100%), enrolled in Medicaid (92.3%), averaged 1.38(SD 0.7) ED visits over the prior three months, and nearly all (85%) experienced activity limitations due to asthma. Themes emerging in the analysis included: (1) Parental beliefs and structural barriers to guideline-based care; (2) Lack of control over environmental triggers; and, (3) Parent advocacy in encounters with providers.
Discussion: National guidelines emphasize multifaceted environmental control practices as core to effective asthma management, yet our study identified profound gaps in caregiver understanding and financial constraints that impeded the implementation of these protocols. Housing insecurity and poor interactions with providers in the school and healthcare systems further generated a sense of helplessness and frustration. Social workers are positioned to advocate for family-centered service delivery as well as provide home and community-based interventions to alleviate caregiver life stressors associated with poverty as a means to improve pediatric asthma management.
Bellin, M. H., Osteen, P., Kub, J., Bollinger, M. E., Tsoukleris, M., Chaikind, L., & Butz, A. M. (2015). Stress and quality of life in urban caregivers of children with poorly controlled asthma: A longitudinal analysis. Journal of Pediatric Healthcare, 29, 536-546.
Corbin, J. & Strauss, A. (2008) Basics of qualitative research 3rd edition. Thousand Oaks, CA:Sage.
McClelland, M., Wenz, C., Sood, K., & Yono, A. (2013). Perceptions of pediatric asthma in African American underserved families using metaphorical analysis. Journal for Specialists in Pediatric Nursing, 18, 342-353.