Microtia is a 'part of me': a qualitative investigation into the family and child's experience of microtia and hearing loss.

内容摘要

This study aimed to investigate the experiences of children/young people and families living with microtia and hearing loss. Interviews and focus groups were conducted with children and young people (n = 11) with microtia and parents (n = 12). A constant comparative approach consistent with Grounded Theory was used. Participants included children and young people with microtia aged 7 to 20, recruited from across England, UK. They engaged in individual semi-structured interviews, whilst parents participated across five online Focus Groups. All participants spoke English and received care from the National Health Service (NHS). Children, young people and parents actively assess the child's hearing needs. Other microtia considerations change over time, and ongoing information-seeking is important. This information is drawn from multiple sources, contributing to an understanding of microtia as an integral aspect of the individual's identity. This study highlights the evolving information needs of children and young people with microtia, including hearing support, ear reconstruction options, managing daily challenges such as school and social situations, and learning about the experiences of peers with similar conditions. The findings show how these needs change over time, emphasising the value of accessible, age-appropriate information to support children as they grow and navigate these experiences.