Hispanic mothers' narratives: Experiences of parenting a child with cystic fibrosis, health beliefs, and health care experiences related to cystic fibrosis

Abstract

The Hispanic population is the fastest growing minority in the United States and is also a minority in the cystic fibrosis (CF) community. Therefore, an increase in CF in the U.S. might be anticipated. This study explored stories of Hispanic mothers’ perspectives of parenting their child with CF, health beliefs, and health care experiences. The study interviewed 10 mothers of which half were English speaking. Narrative structural and thematic analyses were applied through a critical feminist lens. The major themes that emerged were mothering, growing and growth, mother talk, and connected; all informed by Ruddick’s (1995) framework on maternal thinking. Additional major themes were life disrupted and being here. Findings were consistent with existing literature of the dominant Euro-American culture of being a mother of a child with CF. Health beliefs specific to CF care were aligned with prescribed medical treatments. Language emerged as a primary barrier for Spanish-speaking mothers. Mothers acknowledged an existing lack of awareness of CF in the Hispanic community and as underrepresented within the larger CF community. They expressed a desire to see a shift of stereotyped Caucasian images of CF to represent Hispanic people to promote greater awareness in the Hispanic communities and with health care providers.