Validating the Altered Self: A qualitative study of the total laryngectomy experience

Author: Jane Bickford

Bickford, Jane, 2016 Validating the Altered Self: A qualitative study of the total laryngectomy experience, Flinders University, School of Health Sciences

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A total laryngectomy (TL) is a lifesaving and life-changing treatment for laryngeal cancer. The required treatments and rehabilitation are specialised and resource intensive because they result in physical and functional changes that primarily affect respiration, swallowing, communication and appearance. Some studies have highlighted significant adjustments required by individuals with laryngectomy (IWL) and their significant others in dealing with the functional changes in the first year after surgery. Several studies have indicated that issues of stress and burden related to levels of disablement may persist in subsequent years for some individuals and their supporters. Symptoms of depression and anxiety, poor coping skills and increased suicide risk have been associated with TL. Our current understanding of the TL experience and adjustment has been determined primarily from self-report surveys, expert opinion, practice guidelines and first-hand accounts. This collective knowledge has represented some socio-cultural populations more than others.

A broad aim for this study was to critically examine the need for, and dimensions of, psychosocial support in TL in order to develop deeper theoretical understanding to inform recommendations to improve services to IWL. The research objectives related to exploring how a group of IWL constructed meaning in relation to their TL experience, examining the influence of biopsychosocial, cultural and linguistic factors on their psychosocial adjustment; the extent to which health professionals addressed IWL psychosocial issues; and more generally, the professional practices that would provide better psychosocial support for IWL. A qualitative research design using constructivist-interpretive methodology was implemented. It included a constructivist grounded theory approach and the theoretical perspective of symbolic interactionism to guide data collection and analysis.

The study was conducted in three stages to ensure depth and breadth of perspectives. The primary source of data was intensive interviewing. Stage 1 involved IWL at least one year post-surgery. Stage 2 involved primary supporters of IWL (e.g. partners). Stage 3 involved health professionals experienced with TL. A range of reflexive methods was used to ensure rigour.

The primary analysis resulted in six categories and associated subthemes describing the embodied experience of TL. These analyses provided the foundation for the substantive theory Validating the altered self after total laryngectomy (TL). The theory and subsequent Model of validation explicate issues such as altered identity and the reframing of the self. They highlight the relationship between how IWL navigate and negotiate interactions and situations as a result of disruption of their self-expression, related competencies and roles. They describe the influence of the processes of developing competence and building resilience combined with contextual factors (e.g. timing and turning points), being supported and personal factors. Together, they provide a theoretical foundation for evaluating and supporting communicative participation, and optimising person-centred practices for this group.

The findings extend our current understanding of the TL experience and self-identity reframing as a consequence of physical, functional and psychosocial changes. They highlight the importance of increased sensitivity to IWL needs during interaction and well-timed competency training for all involved in the care triad—IWL, primary supporters and clinicians—and also identify timely psychosocial supports for IWL and primary supporters.

Limitations of the study and recommendations for future research are also discussed in this thesis.

Keywords: total laryngectomy, psychosocial adjustment, qualitative, perspectives, communicative competence

Subject: Speech Pathology thesis

Thesis type: Doctor of Philosophy
Completed: 2016
School: School of Health Sciences
Supervisor: John Coveney