Caregiver perception of asthma management of children in the context of poverty

Abstract

Objective: Low-income caregivers of young children with high-risk asthma experience social stressors and illness-related demands that may impede effective home asthma management. Knowledge of the caregiving experience in the context of poverty is limited. Methods: Convenience sampling methods were used to recruit low-income caregivers of children aged 7–12 years, who are frequently in the Emergency Room (ED) for uncontrolled asthma. Thirteen caregivers participated in focus groups that were designed to elicit reflections on asthma home and community management from the caregiver perspective. A grounded theory approach was used in the open coding of transcript data from three focus groups, as well as to revise and reorganize emerging themes and sub-themes. Results: Participants (Mean age = 33.9 years) were predominantly the biological mother (92.3%), single (84.6%), and impoverished (69.2% reported annual household income ≤ $30,000). Their children (Mean age = 7.8 years) were African-American (100%), enrolled in Medicaid (92.3%), averaged 1.38 (SD = 0.7) ED visits over the prior 3 months, resided in homes with at least one smoker (61.5%), and nearly all (84.6%) experienced activity limitations due to asthma. Five themes emerged in the analysis: intensive caregiving role, complex and shared asthma management responsibility, parental beliefs and structural barriers to guideline-based care, lack of control over environmental triggers, and parent advocacy to improve child asthma care and outcomes. Conclusions: Caregivers managing a child with high-risk asthma in the context of poverty indicate the need for ongoing asthma education, increased sensitivity to the complexity of home asthma management, and family-centered interventions that enhance communication and collaboration between caregivers and providers.

Keywords:

• Asthma
• caregiver
• stress
• medication use
• low-income
• focus groups

Acknowledgements

The authors thank the parents who participated in this research.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Funding

This study was funded by the National Institute of Nursing Research, National Institutes of Health (NIH), with the grant number R01 NR013486. The study is registered with ClinicalTrials.gov with number NCT01981564. This publication was made possible by the Johns Hopkins Institute for Clinical and Translational Research (ICTR), which is funded in part by Grant Number UL1 TR 000424-06 from the National Center for Advancing Translational Sciences (NCATS) a component of the National Institutes of Health (NIH), and NIH Roadmap for Medical Research.