Study Aims
The purpose of this preliminary study was to investigate the understanding of asthma and family asthma management practices in low-income African-American and Latino families of infants and toddlers with severe persistent asthma following admission to an inner-city hospital. The four aims of the investigation are to
- Describe family caregivers' understanding of asthma
- Describe the routine and crisis asthma management practices of family caregivers, including those involving interactions with health care providers
- Describe the development in family caregivers' understanding and management of asthma over time
- Describe the social and economic influences affecting family life and asthma management
Methods
The design of this interpretive study was descriptive and longitudinal. The interpretive phenomenological method and small subject population was designed to give an in-depth and intimate view of the experience of the family members who participate. Adult family members were interviewed together up to 5 times over a 6-month period at intervals from 4 to 6 weeks. Interviewer questions were designed to obtain family narratives about the child's asthma from its onset through to the end of the study period.
Data were analyzed as the study progressed. The interpretive method was designed to analyze the data from each family as a whole, the families together, and the details of each narrative. Details were studied in context, and overall interpretations were evaluated for consistency with details of the narrative description. The aim was to discover the commonalities and differences in the participants' experiences. Findings that support interpretive conclusions will be presented in three ways: in paradigm cases, themes, and narrative exemplars.
Status
To date, 5 families in the New Haven community have been recruited
Numerous attempts to recruit additional families via Yale New Haven Hospital, LULAC Headstart, and the Primary Care Center at Yale have not been fruitful.
Results
Families describe the disruption caused by early acute symptoms and the need for emergency care. Without a definitive diagnosis of asthma, parents are confused, uncertain of what to anticipate, and when repeated crises occur, are uncertain about how to respond. Some are unsure how much care to give at home before seeking professional help, especially when crises occur at night. Some families, disappointed by providers' responses to episodic breathing crisis, inform professionals about their assessment that recurring symptoms mean the child has asthma. Some believe that their family experience with asthma and their intimate knowledge of their child's symptoms convey upon them the expertise to make the diagnosis and to direct professional care. Although all families seek definitive ways to respond, they often feel surprised by exacerbations, uncertain about how to respond, and unsure about how much to rely on professional care even after diagnosis. Despite available and intense support by providers, the families in this study experienced anxiety when episodes of breathing crisis recurred.
Dissemination
Presentation
Koenig, K. "Early experiences of asthma in infants and toddlers: Moderate/severe persistent asthma in low income African-American and Latino families." (Poster). Yale Center for Self Management Intervention Symposium, October 27, 2004.
Publication
Koenig, K. Persistent asthma in low-income infants and toddlers: Parents' continuously challenged certainty. Manuscript under development.
Follow-up
The findings of this study help us better understand the struggle of daily asthma management in infants and toddlers with severe persistent asthma. Findings illuminate the strengths and weaknesses of general, and comprehensive individualized approaches to asthma management as experienced by this group of study families. Children in these families were all at high risk due to poverty and ethnic minority status. As a result, the findings describe potential sources of disparity in morbidity due to asthma in low-income African American and Latino children and will direct the improvement of intervention management for infants and toddlers with chronic persistent moderate-severe asthma and their families.
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