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Maria Helena Brandalise, Marcos Bandiera Paiva and José Paulo Fiks
Background: Recurrent head and neck cancer (rHNC) still carries a poor prognosis. There is no generally accepted standard treatment protocol for this condition, and most patients succumb to the disease after 18 months. What often goes unexamined is the “personal listening language” (PLL) and emotional background of these patients, which favors addictive alcohol and tobacco behavior and is strongly correlated to a broad range of psychosocial problems that become exacerbated over time. Objective: The study aimed to describe the PLL of patients with head and neck cancer. To that end, we conducted a retrospective study of data collected through an open-ended questionnaire applied individually to each patient who freely wanted to participate. This study aimed to better study the patients’ emotional state, insofar as the “emotion” for these patients is the feeling of fear of dying, of helplessness, guilt that generates internal and external disorganization in the patient’s life, causing depression, despair and distress for many. That accounts for the search for their Personal Listening language, which is the expression of their uniqueness and peculiar way to understand their existence, that is, an existential semantics of the individual patient. Justification for using the PLL: This PLL was important because it allowed patients to speak with a professional psychologist who heard and listened to them in their mental and physical pain, involving fear, loneliness, guilt, and to express their anguish and suffering. “Emotion” for these patients is the feeling of fear of dying, of helplessness, a guilt, which generates internal and external disorganization in the patient’s life, causing depression, despair and grief to many. The patient who suffers, who is in distress and upset by his/her situation needs medical and psychological assistance, a holistic treatment. The psychological support through the LPP in patients with head and neck cancer allows them to overcome emotional issues and have serenity vis-à-vis the illness. Methodology: This study started in July 2009 and finished in December 2010. 124 patients were treated during a total of 191 sessions of psychological support. This doctorate student from the university was available two afternoons a week at the clinic on a voluntary basis for patients who wanted this service. An open-ended questionnaire was given to the each patient, which allowed the consented participation of patients in the care during our meeting. The responses, which shall be kept for three years, were recorded and included their personal data, the hospital’s HR and the number of care. Patients answered openly and felt welcomed and grateful for the benefits they experienced, which allowed them to better cope with their situation and have a professional who heard them in their emotional and psychological distress. Responses were grouped and written down. After these visits, because we realized that the statements of the patients were positive about the LLP, we decided to request the Ethics Committee of Escola Paulista de Medicina - UNIFESP, approval to conduct the Retrospective Study, which was approved CEP No. 0291/11. The collected material allowed us to write in order to be able to collaborate in the awakening of increased public health attention and care to these patients who suffer from loneliness, are distressed and need to be heard and listened and offer them quality of life during their illness and support to their suffering and emotional distress, something mostly forgotten. Results and conclusions: The findings revealed the psychological benefit of this type of listening for rHNC patients in coping with their illness and suffering, as well as for improving the quality of their emotional life. We could see that PLL, through the psychological support to patients with head and neck cancer, according to their own speeches, made them thankful that they found a point of reference to talk about their psychic pain and suffering. It was observed that although they are experiencing a disease that leads them to the finiteness of life, this listening allowed them to endure and cope with the situation in a more serene manner, motivating them to live a better quality of life, taking care of themselves, learning the importance of food, family interactions and overcoming anxiety, distress, fear of living alone. The PLL encouraged not only an internal well-being but also a new meaning to their lives, a return to spirituality in their beliefs and an analysis of their history, now that they were more organized within, awakened to live with a better quality of life in the days they have left.