Speaking legibly: Qualitative perceptions of altered voice among oral tongue cancer survivors

OBJECTIVE Treatment for oral tongue cancer poses unique challenges to restoring and maintaining personally acceptable, intelligible speech. METHODS We report how oral tongue cancer survivors describe their speech after treatment in a qualitative descriptive approach using constant comparative technique to complete a focal analysis of interview data from a larger grounded theory study of oral tongue cancer survivorship. Interviews were completed with 16 tongue cancer survivors 3 months to 12 years postdiagnosis with stage I-IV disease and treated with surgery alone, surgery and radiotherapy, or chemo-radiation. All interview data from the main study were analyzed for themes describing perceptions of speech as oral tongue cancer survivors. RESULTS Actual speech impairments varied among survivors. None experienced severe impairments that inhibited their daily lives. However, all expressed some level of concern about speech. Concerns about altered speech began when survivors heard their treatment plans and continued through to survivorship without being fully resolved. The overarching theme, maintaining a pattern and character of speech acceptable to the survivor, was termed "speaking legibly" using one survivor's vivid in vivo statement. Speaking legibly integrate the sub-themes of "fears of sounding unusual", "learning to talk again", "problems and adjustments", and "social impact". CONCLUSIONS Clinical and scientific efforts to further understand and address concerns about speech, personal presentation, and identity among those diagnosed with oral tongue are important to improving care processes and patient-centered experience.