Abstract
Background: A total laryngectomy often prolongs life but results in long-term disablement, disfigurement, and complex care needs. Current clinical practice addresses the surgical options, procedures, and immediate recovery. Less support is available longer-term despite significant changes to aspects of personhood and ongoing medical needs.
Objective: The aim of this study was to explore the experience of living with and/or supporting individuals with a laryngectomy at least 1 year after surgery.
Methods: Constructivist grounded theory methods and symbolic interactionism were used to guide collection and analysis of interview data from 28 participants (12 individuals with a laryngectomy, 9 primary supporters, and 7 health professionals).
Results: The phenomena of "validating the altered self after total laryngectomy" highlighted how individuals, postlaryngectomy, navigate and negotiate interactions due to the disruption of their self-expression, related competencies, and roles. Several reframing patterns representing validation of the self emerged from the narratives. They were as follows: destabilized, resigned, resolute, and transformed. The data describe the influence of the processes of developing competence and building resilience, combined with contextual factors, for example, timing and turning points; being supported; and personal factors on these reframing patterns.
Conclusion: The findings further our understanding of the long-term subjective experience of identity change after laryngectomy and call attention to the persisting need for psychosocial support.
Implications for Practice: This research provides important evidence for evaluating and strengthening the continuum of services (specialist to community) and supporting social participation, regardless of communication method, and for competency training for all involved to optimize person-centered practices.