The lived experience of Glue Ear - voices of mothers and young people

Glue Ear is the most common reason for surgery in young children but little is known about its day-to-day impact on parents and young people. There has been no previous research which directly asks young people about their experience of Glue Ear. This qualitative research project explored the feelings, experiences and perceptions of a small sample of mothers of a child with chronic Glue Ear. Their children were also asked about their experiences of ongoing Glue Ear. A combination of Photo-voice and Interpretative Phenomenological Analysis (IPA) enabled participants to identify their key issues. Participants created photos/ images representing their experiences and feelings. They explored these in a participant-led discussion. IPA provides a framework for grounding the interpretation in the participant’s words then develops a set of themes which reflect their perspective. The mothers identified that they had: increased levels of anxiety as Glue Ear is often constructed as ‘temporary’, which didn't reflect their experience; limited understanding of the potential impact on their child’s emotional and social development; and that they wanted to work in greater partnership with Healthcare and Educational professionals. The young people explained they lacked communication and involvement in their treatment and the condition is little understood in schools. The findings are illustrative of the experience of living with long-term Glue Ear. The methodology can be used to encourage patient participation regarding their perceptions of a long-term condition.