Self-expression and identity after total laryngectomy: Implications for support

Objective: To explore how individuals with a laryngectomy (IWL) from diverse backgrounds make meaning and adjust to the physical and functional changes from a total laryngectomy. To examine the extent primary supporters (PS) and health professionals (HP) are able to support IWL with the psychosocial and existential challenges rendered by a surgery that significantly impacts a person's talking, breathing, swallowing, and appearance. Methods: A constructivist grounded theory approach and symbolic interactionism were used to guide data collection and analysis. Semi-structured interviewing occurred. Results: Twenty-eight participants (12 IWL, 9 PS, and 7 HP) were interviewed. The findings suggest that IWL experience significant change to their self-identity and there is evidence of a range of passive and active reframing patterns (destabilised, resigned, resolute, and transformed). The loss of self-expression included changes to communicative participation, personal style, food preferences, and social roles. Short and longer-term supports appear to influence outcomes but are often ill-equipped to manage the psychosocial needs of IWL. Conclusions: Loss of self-expression after total laryngectomy influences self-identity and adjustment. How individuals reframe their identity appears to be tied with how they view their disabilities and disfigurement. These perceptions also appear to be influenced by the reactions of others and the support available. Further resourcing, education, and training are needed so that PS and HP can provide holistic care.