Women's perspective on life after total laryngectomy: a qualitative study

Abstract

Background Physical and psychosocial challenges are common after total laryngectomy. The surgery leads to lifelong changes in communication, airway, swallowing and appearance. As we move towards health models driven by patient‐centred care, understanding the differential impacts of surgical procedures on subgroups of patients can help improve our care models, patient education and support systems. This paper discusses the experiences of women following total laryngectomy. Aims To gain an insight into the impact of total laryngectomy on women's daily life while identifying their specific rehabilitation needs. Methods & Procedures This paper is based on in‐depth, semi‐structured interviews with eight women who had undergone total laryngectomy. These interviews were conducted with women at least 1 year after they had undergone total laryngectomy, and the participants did not have recurrent disease. Using an interview guide, participants were encouraged to discuss their everyday experiences, while also focusing on issues typical to women. The transcribed interview data were analysed by thematic analysis, taking interpretative phenomenological analysis as a lead. Outcomes & Results The interviews revealed three main themes: disease and treatment as a turning point, re‐establishing meaningful everyday activities, and persistent vulnerability. Participants reported experiencing challenges in their rehabilitation process due to physical disabilities, dependency on others and experienced stigma. Women‐specific challenges arose in dealing with the altered appearance and voice, performing care activities, and the spousal relationship (including intimacy). Conclusions & Implications Women who undergo total laryngectomy are likely to experience issues in returning to work, the performance of informal care‐work, the spousal relationship, intimacy and social interaction due to stigmatization. Medical pretreatment counselling and multidisciplinary rehabilitation programmes should help patients form realistic expectations and prepare them for the changes they will face. A gender‐ and age‐matched laryngectomized patient visitor can contribute to this process. Rehabilitation programmes should incorporate the partner and offer psychosocial support for women following total laryngectomy to return to their former roles in family life, social life and work‐related activities.

The quality of life in patients with total laryngectomy

“…In this study, we addressed the main concerns that may influence the quality of life for these patients, including voice, smell and deglutition. Comparing the results with the published literature, the outcome was similar, voice rehabilitation and the ability to communicate had a positive influence over the quality of life for the total laryngectomee [12][13][14] .…”

“…There is a great need for specialised medical personnel, physicians, nurses and therapists to help the patient with total laryngectomy gain a good quality of life 12,14,17 . This is useful for their physical and mental status, but the health education of communities is also important, in order to make the social reintegration of these patients possible.…”

Stigma in the face of cancer disfigurement: A systematic review and research agenda

“…Feelings of stigma and experiences of stigmatisation were noted to various degrees in all of the reviewed studies. van Sluis Kornman, van der Molen, van den Brekel, and Yaron (2020) noted that women who had undergone laryngectomy experienced stigma such as offensive comments, intrusive questions, or experiences of bullying due to their “unusual” voice and appearance. Similarly, Waljee et al (2008) found women with pronounced breast asymmetry were more likely to feel stigmatised as a result of their breast surgery.…”

Silent Speech Interfaces for Speech Restoration: A Review

“…In general, substitute voices generated by these methods are not agreeable, cannot be adequately modulated in terms of pitch and volume and are difficult to understand [80], [81]. Moreover, women often dislike their new voice, finding it masculine and disturbing, due to the hoarse, deep nature of the sounds produced [82]. Furthermore, tracheoesophageal speech requires frequent valve replacement (every 3-4 months) as the valve may fail after becoming colonised by biofilm [83].…”

“…Finally, the voice generated by an electrolarynx sounds robotic and requires the patient to hold an external device, pressing it against the neck [24]. The drawbacks associated with each of these techniques negatively affect the patient's quality of life in terms of imperfect voice acceptance, restricted communication and limited social interaction [82], [85].…”