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

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.