Psychosocial experiences of Spanish-speaking parents of children with craniofacial microsomia

Stock, Nicola; Rahman, Muhammad; Avila, Sandra; Heike, Carrie; Stueckle, Laura; Schefer, Amy; Johns, Alexis

Abstract

Craniofacial microsomia (CFM) and microtia psychosocial research in the U.S. is primarily with English-speaking participants. Given that 19% of the U.S. is Latino and there is a higher prevalence of CFM in Latino populations, this study aims to describe psychosocial experiences related to CFM among Spanish-speaking Latino caregivers to better inform healthcare. Narrative interviews (mean 73±17 minutes) were completed in Spanish with parents of children with CFM aged 3-17 (mean age 10.8±4.8 years). Transcripts were analyzed using quantitative linguistic analyses and reflexive thematic analysis. Participants (N=12) were mostly mothers (83%) who had immigrated to the U.S. and had low socioeconomic status. Based upon analysis of grouped word counts, participants spent approximately half of their narratives discussing the first two years of their child’s life. Themes selected based on U.S. Latino sociodemographics and cultural values included the Impact of Language, Healthcare Challenges, Supportive Healthcare Experiences, Caregiver Coping with CFM, Family Roles, and Addressing Social Implications of CFM. Results highlighted that the first years of care are of critical importance to parents and suggest this is an optimal time to focus education and support services for families. Additional treatment suggestions include providing interpretation and informational materials in Spanish, addressing care barriers, supporting familial and child coping, accounting for the role of extended family, and helping address social concerns. Ongoing research with Latino families can further assist in guiding culturally sensitive CFM healthcare.

Citation

Stock, N., Rahman, M., Avila, S., Heike, C., Stueckle, L., Schefer, A., & Johns, A. (in press). Psychosocial experiences of Spanish-speaking parents of children with craniofacial microsomia. Journal of Craniofacial Surgery,

• Journal Article Type: Article
• Acceptance Date: Apr 4, 2024
• Deposit Date: May 3, 2024
• Journal: Journal of Craniofacial Surgery
• Print ISSN: 1049-2275
• Publisher: Lippincott, Williams & Wilkins
• Peer Reviewed: Peer Reviewed
• Keywords: Visible Difference; Craniofacial; Spanish; Interviews; CARE
• Public URL: https://uwe-repository.worktribe.com/output/11975109