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.

Children with poorly controlled asthma: Randomized controlled trial of a home‐based environmental control intervention

“…Caregiver emotional and financial strains to implement a total home smoking ban may elucidate the complexity in reducing a child's SHS exposure . Caregiver misunderstanding of the ubiquitous penetration of SHS in their home and/or residing in multiunit dwellings may have contributed to the null effect of the intervention . Alternatively, health behavior of parents who smoke may explain the lack of decreasing SHS exposure in this sample of high‐risk children.…”

The experiences, perceptions and challenges of mothers managing asthma in their children: a qualitative study

“…Additionally, they do not know what to do, feel desperate, constantly making an effort in order to prevent their children from getting sick, sleep beside their children at night and constantly keep their eyes on their children, and always take leave from their jobs during disease periods, which affects their professional life. 20,21 Challenges were feelings of guilt and blame, concerns about reproduction, feeling helpless and alone, feeling worried about the future, the burden and problems during the diagnostic process. The interpersonal challenges that were identified were the feeling of isolation, negative impacts on relationships, financial impacts, lack of knowledge and understanding among their community, lack of support, and lack of help from the health professionals.…”

“…Similarly, in previous studies, the measures most frequently taken by families in order to cope with the disease were determined to be as follows: keeping the room moist and ventilated, not smoking at home, frequently changing bed sheets, using hypoallergenic beds, and limiting physical activity. 20,21,25 In studies of the experiences of families, the families having child with asthma, emphasized the lack of training and psychological support provided by healthcare professionals. 19,[33][34][35] Moreover, in previous studies, it was reported that families had problems with school personnel concerning managing asthma and that many families did not send their children to school during periods of exacerbations.…”

“…23 In a systematic review on the obstacles and difficulties in asthma control, the most important factors were reported to be the families' knowledge level, beliefs, access to healthcare services, and trust in emergency services. 24 Bellin et al 20 declared that the mothers felt that they were not understood by healthcare professionals in the hospital environment. Parents having a child with asthma generally need high-quality care and to be listened to, understood, and respected by healthcare personnel, as well as to be given training offering simple and understandable information.…”

Knowledge, attitudes and quality of life of caregivers towards asthma in their children: a Nigerian perspective

“…The management of asthma in pediatrics requires caregiver competencies such as the identification and avoidance of triggers, implementation of environmental control protocols at home, recognition of symptoms, and administration of medications (7). Caregivers experience the challenges of identifying and managing allergies, being hypervigilant, differentiating asthma symptoms from other health concerns, and knowing when to seek emergency care (8). These could make asthma caregiving stressful.…”