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.
People who lack part(s) of their face have a visibly different appearance both due to their facial difference itself and the medical aids that they use to cover it (e.g. prostheses, bandages). In this article, we draw on interviews with affected individuals in order to investigate how visible difference features in their everyday experience. The visibility of their facial difference, we show, comes into play as they interact with various others in the contexts of their daily life. However, respondents' visibility manifests in different ways, depending on whether they cover or uncover their facial difference. These different modes of visibility make for distinct 'visibility experiences' , as participants meet others who notice-or fail to notice-their atypical appearance. By exploring these experiences, our article provides insights into the role of visibility in interviewees' everyday life, and demonstrates how they actively negotiate their social recognition within encounters with various others. Points of interest • The experiences of individuals who lack part(s) of the face-and, generally, the experiences of individuals who have a visibly different face-have not received much attention in disability scholarship. • Individuals who have lost part(s) of the face can display their faces by either uncovering the missing facial area or covering it with various medical aids. In encounters with others, these different displays produce different experiences. • People who have an unusual face may actively negotiate the meaning their appearance receives in social interactions. In this way, they try to avoid being reduced to their difference.
In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals' engagement with everyday projectsThe term ''disfigurement'' may carry derogative associations which serve to stigmatize those who have an atypical (facial) appearance. In order to prevent such associations in this article, we mostly opt for neutral, descriptive terms such as ''visible (facial) difference,'' ''atypical face,'' ''facial limb absence/ loss,'' or ''amputated (facial) area'' when referring to the condition and looks of the participants in our study (see for guidelines on non-offensive language as formulated by UK-based charity organization Changing Faces: https://www.changingfaces.org.uk/about-us/press-media/media-guidelines). When we cannot avoid the term ''disfigurement,'' we use quotation marks to denote its problematic nature. when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face's absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodiment.
ObjectiveTo explore how residents experienced the application of the Positive Health dialogue tool (PH-tool) during outpatient consultations and its influence on the delivery of value-based healthcare (VBHC).DesignQualitative study using non-participant observations of outpatient consultations during which residents used the PH-tool, followed by longitudinal individual, semistructured interviews. To analyse the data from observations and interviews, observational form notes’ summarisation and categorisation, and an iterative-inductive thematic approach was used.ParticipantsEight residents—five from the ear, nose, and throat-department and three from the gastroenterology-hepatology-department—were selected through convenience sampling, accounting for 79 observations and 79 interviews.ResultsResidents had bivalent experiences with using the PH-tool. Residents discussed three main benefits: a gained insight into the individual patient’s context and functioning, a changed dynamics in resident–patient communication, and an increased awareness regarding value in terms of patient-related outcomes and healthcare costs. Three barriers became apparent: doubts regarding the PH-tool’s relevance and scope, boundaries of superspecialised medical professionals, and a lack of demarcation in clinical practice.ConclusionThe PH-tool use can be beneficial for residents during outpatient consultations with new patients and follow-up in cases of multidimensional problems, particularly in cases of chronic conditions and generalist care. In these situations, the tool yielded valuable patient information beyond physical health, helped foster patient engagement, and enabled tailoring the treatment plan to individual patients’ needs. On the other hand, the PH-tool was not a good fit for simple problems, clearly demarcated help requests, periodic follow-up consultations, or verbose patients. In addition, it was not suitable for superspecialised care, because it yielded an abundance of general information. For particular patients and problems, using the PH-tool seems a promising strategy to increase VBHC delivery. Nevertheless, further research and detailing is needed to better align the PH-tool’s broad intent and clinical practice.
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