Living with the altered self: a qualitative study of life after total laryngectomy

Total laryngectomy (TL), a life-preserving surgery, results in profound physical and communication changes for the individual. Physical and psychosocial adjustment to a TL is complex, and quality-of-life (QoL) measures have provided useful knowledge to assist clinical management. However, many tools were developed without considering the perspectives of people who have experienced TL. To improve understanding of the phenomena of living with TL, a qualitative study was conducted which explored the views and experiences of seven men and five women from a range of ages, geographical locations, and social situations who had undergone a TL. Data were collected through in-depth, semi-structured interviews, journals, and field notes, and analysed using a constructivist grounded theory approach and symbolic interactionism. The emergent concept was identifying with the altered self after TL as reflected in dynamic multi-level changes (physical, communication, and psycho-emotional) continuously interacting with intrinsic and extrinsic interpersonal factors including personal and socio-cultural constructs, e.g., age, gender, resilience, beliefs, and supports. This process affected the strategies these individuals used to negotiate their social experiences. The extent to which communication changes disrupted social roles affecting a person's sense of self appeared to relate to long-term adjustment.