Improving Care of Inner-City Children with Poorly Controlled Asthma: What Parents Want You to Know

Background:

Inner-city caregivers of children with high-risk asthma experience multiple home and community stressors resulting in non-adherence to guideline-based care and increased asthma morbidity. The experience of caregivers living in extreme poverty is understudied, and even less is known about how they view relationships with community providers in the shared management of their child’s asthma (McClelland, et al., 2013). In-depth interviews were used to examine the caregiving experience and explore interactions with school and healthcare professionals as a means to enhance asthma care delivery.  

Methods:

Caregivers were part of a randomized controlled trial (RCT) testing the effectiveness of a pediatric asthma Emergency Department (ED) and home-based environmental control intervention for children with frequent ED visits for asthma. Purposive sampling methods were used to recruit 12 caregivers who had completed the RCT and who had high depressive symptomology (>CES-D cut-point) and/or life stress scores. Three additional caregivers without psychological symptoms were interviewed to ascertain differences in asthma management experiences. Trained study staff conducted the interviews, which typically lasted 30 minutes and produced an average of 15 pages in transcription data.

Constant comparison techniques were used by two team members who independently evaluated the emerging themes and sub-themes in relation to the data (Corbin & Strauss, 2008). Additional techniques to increase the trustworthiness of findings included triangulation across disciplines, the use of an outside reviewer with expertise in poverty and child health conditions, and member-checking (Padgett, 2008). 

Results:

Caregivers (N=15; Mean age 33 years) were the biological mother (100%), single (87%), and living in poverty (77% reported annual household income <$30,000).  Children (Mean age 7 years) were African American (100%), enrolled in Medicaid (100%), averaged 1.53(SD 0.99) ED visits over the prior three months, and nearly all (80%) experienced activity limitations due to asthma.

Four themes emerged in the analysis: Deplorable Housing Conditions; Allies and Adversaries in School-based Asthma Management; Asthma Healthcare is Generally Satisfactory; Caregivers are in Distress. Positive interactions with healthcare providers and frustration with school-based asthma care were consistent themes across participants, but caregivers who had high depressive symptoms or life stress were more likely to reside in poor housing stock (mold, rodents) and disclose current psychological distress.

Implications:

Comprehensive care for children with poorly controlled asthma requires providers to understand how social inequities experienced by families create barriers to treatment adherence.  Low-income parents want providers to be aware of the extreme housing conditions that their children with asthma experience, most of whom lack resources to change their circumstances. Social workers are well positioned to promote family-centered approaches that take into consideration the family’s context, inclusive of assessments that examine caregiver distress, and to advocate for enhanced asthma education and awareness in schools.

 Corbin, J. & Strauss, A. (2008) Basics of qualitative research 3^rd edition. Thousand Oaks, CA:Sage.

McClelland, M et al.  (2013).  Perceptions of pediatric asthma in African American underserved families using metaphorical analysis.  Journal for Specialists in Pediatric Nursing, 18, 342-353.

Padgett, D. (2008). Qualitative methods in social work research (2^nd ed.). Thousand Oaks, CA: Sage.