Affiliations: [a] School of Medicine, University of California, San Francisco, CA, USA | [b] Department of Otolaryngology-Head and Neck Surgery, Stanford University, Stanford, CA, USA | [c] Division of Pediatric Otolaryngology, University of California, San Francisco, CA, USA | [d] Divisions of General Pediatrics and Internal Medicine, University of California, San Francisco, CA, USA
Corresponding author: Dylan K. Chan, Division of Pediatric Otolaryngology, Department of Otolaryngology-Head and Neck Surgery, University of California, 2233 Post St, Third Floor, PO Box 1225, San Francisco, CA 94115, USA. Tel.: +1 415 353 2012; Fax: +1 415 353 2603; E-mail: [email protected].
Abstract: PURPOSE: To identify key determinants of the quality of life of caregivers of infants and toddlers (< 3 years) who are deaf/hard-of-hearing (DHH). METHODS: We conducted focus groups with providers for children who are DHH as well as interviews with hearing parents of infants and toddlers who are DHH. A multi-step qualitative analysis on interview data using grounded theory was performed, and an iterative analysis to investigate codes to characterize specific topics in caring for deaf infants and toddlers was conducted. RESULTS: Four focus groups (n= 33) and six semi-structured interviews (n= 7) were conducted. The major theoretical code found was the “Search for Equilibrium” in parenting which arose from the three main categories of the caregiver role/experience: (1) being a parent – modifying parenting style as a result of their child’s hearing loss, (2) being a mediator – modulating and filtering interactions between their child and their child’s environment, and (3) being a navigator – managing the logistics of the medical and educational system. CONCLUSIONS: For hearing parents, the diagnosis of hearing loss requires changes in multiple domains of parenting. Support in each of these areas is critical for parents to restore a sense of equilibrium that is central to their quality of life. This framework provides a way to categorize parent experiences and may act as a template for focused interventions in the three identified domains.