Objective The impact of hearing loss (HL) on quality of life (QOL) in young children has not been examined systematically. The objective of this study was to examine patient, parent, and professional perspectives on experiences and situations that affect the QOL in young children with HL and to identify themes that emerged from coded data to develop a parent-proxy QOL measure for young children with HL. Study Design Qualitative study with 6 focus groups followed by semistructured interviews with other parents and professionals as stakeholder checks. Setting Academic medical center and local schools for the deaf. Methods Audiology department clinic lists were used to identify eligible participants, who included 5- to 7-year-old children with permanent HL and parents of 2- to 7-year-old children with permanent HL. A sample of 6 children and 12 parents participated in focus groups. An audiology department and multiple schools for the deaf in the area were contacted to recruit for professional participants, resulting in a sample of 10 professionals who participated in focus groups. Focus groups and interviews were audiotaped and transcribed verbatim. Inductive thematic analysis of focus group transcripts identified key concepts and emerging themes of how HL affects young children. Results Six themes emerged from the data: behavior, feelings, environments, social/activities, family, and hearing equipment. Child, parent, and professional focus group themes overlapped well, and data saturation was reached. Conclusion These qualitative data provided insight into HL-related issues affecting young children’s QOL and were used to create items for a new parent-proxy QOL questionnaire.
Item generation for a proxy health related quality of life measure in very young children
