Promoção do conforto da pessoa com cancro de cabeça e pescoço em fim de vida e família: intervenção de enfermagem / Promoting comfort for people with head and neck cancer at the end of life and their families: nursing intervention

O presente relatório foi desenvolvido no âmbito da unidade curricular de estágio com relatório do 3º semestre do 12º Curso de Mestrado/Especialidade em Enfermagem Médico-Cirúrgica na vertente de Enfermagem Oncológica. Exercendo funções num Serviço de Otorrinolaringologia e, contatando diariamente com pessoas com CCP, verifico, após reflexão pessoal, que esta população sofre um enorme impacto no seu conforto, em particular, no fim de vida, sendo uma perceção igualmente partilhada pelos colegas do serviço. Além disso, a equipa de enfermagem refere sentir dificuldades na prestação de cuidados promotores do conforto, nomeadamente, no controlo de sintomas do foro físico, psicológico, social e espiritual a esta população e sua família. Deste modo, com a elaboração deste relatório, pretendo demonstrar o processo de desenvolvimento de competências de enfermeiro especialista na intervenção de enfermagem à pessoa com CCP em fim de vida e sua família, contribuir para a melhoria da qualidade dos cuidados prestados e promover o seuconforto. Sustentada na metodologia de projeto, realizei três estágios onde, nos dois primeiros, potenciou-se um processo de desenvolvimento de competências técnicas, relacionais e pessoais para o cuidar da pessoa em fim de vida. No último estágio, apliquei o que foi desenvolvido em termos de competências de enfermeiro especialista bem como capacitei a equipa de enfermagem através da realização de duas formações onde foram apresentadas as intervenções de enfermagem promotoras do conforto à pessoa com CCP em fim de vida e família, conteúdos acedidos através da revisão da literatura e observação da prática de cuidados. Foram ainda elaborados e apresentados um guia orientador de cuidados dirigido aos enfermeiros do Serviço de ORL que será uma ferramenta chave para a prática bem como um protocolo de articulação com a EIHSCP que permitirá estruturar a resposta às necessidades de cuidados paliativos da pessoa com CCP através da parceria entre as equipas de enfermagem dos Serviços ORL ­ internamento e da EIHSCP, sendo que ambos irãopotenciar uma resposta mais precoce e de qualidade pela equipa de enfermagem e contribuir para a promoção do conforto da pessoa em fim de vida e família.

This report was developed within the internship curricular unit with report of the 3rd semester of the 12th Course of Master/Specialty in Medical-Surgical Nursing in the Oncological Nursing field. Performing functions in an Otorhinolaryngologist Service and contacting daily with CCP patients, I verified after a personal reflection, that this population suffers an enormous impact in its comfort, particularly, in the end of life. This perception is equally shared by the co-workers. Furthermore, the nursing team refers to have difficulties in the provision of care that maximize comfort, namely the control of symptoms of the physical, psychological, social and spiritual forum to this population and its family. This way, with the elaboration of this report, I intend to demonstrate the development process of skills of a specialist nurse in the nursing intervention to the person with CCP in end of life and its family, contributing to the improvement of the quality of the provided care and promotion of their comfort. Supported by the project methodology, three internships were made where, in the first two, it was strengthened a development process of technical, relationship and personal skills to the care of a person in end of life. In the last internship, I applied what was developed in terms of skills of specialist nurse as well as I enabled the nursing team through two trainings where it was disclosed the nursing interventions promoters of comfort to the person with CCP in end of life and family, contents assessed through the literature review and observation of practical cares. It was also made and presented a guiding guide of cares addressed to the nurses of the ORL Service which will be a key tool for the practicing as well as an articulation protocol with the EIHSCP, which will allow to organize the answer to the needs of palliative care of the person with CCP through the partnership between the nursing teams of the ORL Services ­ internment and the EIHSCP, both of which will potentiate an earlier and with more quality action by the nursing team as well as promote the comfort of the person in end of life and its family.

A transition out of the darkness: Patients' experience of the recovery phase after treatment for head and neck cancer.

PURPOSE: To explore the recovery experience of patients who completed medical treatment for head and neck cancer (HNC). METHOD: The study conducted interviews with a strategic sample of 12 patients at an oncology clinic. Interview data were analyzed by qualitative content analysis with a deductive approach based on transition theory. RESULTS: The transition theory coding frame for patients' descriptions of their recovery process produced four categories: properties, personal conditions, process indicators, and outcome indicators. Personal conditions, such as cultural beliefs and attitudes, impact the outcome of recovery, and necessitate interaction throughout the care chain using the person-centered care approach to help survivors master their changed living conditions during recovery after HNC. The transition was described as a journey out of a dark period characterized by a struggle with the side effects of chemotherapy and radiation treatment. CONCLUSIONS: This study highlighted the use of person-centered care to facilitate transition in the recovery phase, supported by an intra-professional team that collaborates during the care chain (primary care to hospital care). Patient education and self-care are tools that improve the transition from illness to everyday life.

Oral Dysfunction in Patients With Head and Neck Cancer: A Systematic Review.

BACKGROUND: Head and neck cancers (HNCs) and their treatment may cause oral function impairment. PURPOSE: This study was designed to identify oral dysfunction in patients receiving treatment for HNCs using a systematic review. METHODS: The PubMed, Embase, and CINAHL databases were searched for studies on oral function impairment in patients receiving treatment for HNCs published between January 2014 and May 2019. Only descriptive, correlational, and interventional quantitative studies that included patients receiving treatment for HNCs who presented with oral dysfunction, were published in English during the aforementioned time frame, and were accessible in full-text versions were selected. RESULTS: Twenty-eight studies (13 cross-sectional, two longitudinal, 12 randomized controlled trial, and one retrospective chart review) fulfilled the inclusion criteria. Oral mucositis, dysphagia, xerostomia, trismus, and chewing and speech problems were the most common oral dysfunctions. Age, cancer stage, tumor location, treatment modalities, treatment status, treatment dose, and pretreatment oral function were factors associated with oral dysfunction. Although individual interventions were shown to improve oral dysfunction, the related evidence was inconclusive. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: Primary HNCs and their treatment significantly deteriorate oral function. A holistic and interdisciplinary approach may maximize oral function.

Validation of the Supportive Care Needs Survey Screening Tool Chinese Version for Patients With Head and Neck Cancer in Taiwan.

BACKGROUND: The increasing number of cancer survivors and the trend of shifting cancer treatments into outpatient clinics have increased rapidly the supportive care needs of patients with cancer. However, no brief assessment tool is available to screen for these needs. PURPOSE: In this study, we aimed to (a) translate and develop a nine-item Chinese version of the Supportive Care Needs Survey Screening Tool (SCNS-ST9-C) and (b) examine the psychometric properties of this tool in a sample of patients with head and neck cancer (HNC) in Taiwan. METHODS: In this two-phase instrument validation study, the SCNS-ST9-C was translated and evaluated for content, face validity, and feasibility in Phase I and was examined for internal consistency reliability and construct validity (including factor structure and theoretically supported correlations) on a sample of patients with HNC in Phase II. RESULTS: In Phase I, the SCNS-ST9-C was translated and developed by three bilingual doctoral-prepared nurse researchers (Chinese and English). A standardized score system ranging from 0 to 100 was built, with higher scores indicating higher unmet supportive care needs. Good content and face validity were confirmed by five cancer care experts and 20 patients with HNC, respectively. In Phase II, 116 subjects were recruited. A clear four-factor structure, which incorporated one of the original five dimensions (sexuality care needs, with one item) into the dimension of psychological and emotional care needs, was identified using exploratory factor analysis. Good internal consistency reliability for the overall SCNS-ST9-C was supported by a Cronbach's α of .75 and its four subscales (domains). Good construct validity was also confirmed by the theoretically supported correlations. Better performance status and longer time since treatment completion correlated negatively with the SCNS-ST9-C (i.e., lower unmet care needs), whereas higher distress (anxiety, depression, and symptoms) correlated positively with the SCNS-ST9-C (i.e., greater unmet care needs). Female patients reported higher overall unmet care needs and psychological and emotional care needs and higher scores on the care and support needs subscale than male patients. CONCLUSIONS: The SCNS-ST9-C is a brief, low-burden, and psychometrically valid instrument that may be applied in ethnically Chinese settings. This tool takes 1-2 minutes to complete. Further testing of the psychometrics of this instrument in different cancer populations is recommended.

Care for the person with oncological wound: permanent education in nursing mediated by educational technologies. / Cuidado à pessoa com ferida oncológica: educação permanente em enfermagem mediada por tecnologias educacionais.

OBJECTIVE: To recognize how educational technologies are not up-to-date and do not care about head and neck oncology. METHODS: Qualitative, exploratory-descriptive research. Held with 12 nurses, at a cancer reference center in the south of the country, in July/2017. Through a semi-structured interview and data analyzed by Minayo Thematic Analysis. RESULTS: Results of two categories: "The techniques of updating the nurse" and "The use of educational technologies in the nurses' daily life". In this context, a version of the present in the training of students stands out, since the data of secondary education are permanent, evidencing a small use of technological resources for this purpose. CONCLUSION: It is suggested to integrate the use of technologies with lifelong education in order to become popular in professional practice.

The ENHANCES study: a randomised controlled trial of a nurse-led survivorship intervention for patients treated for head and neck cancer.

PURPOSE: A randomised controlled trial was conducted to evaluate the effectiveness of a nurse-delivered Head and Neck Cancer Survivor Self-Management Care Plan (HNCP) for patients who had completed treatment for head and neck cancer (HNC). METHODS: Ten oncology nurses were trained to deliver the HNCP. The HNCP consisted of one face-to-face hour-long meeting in which the patient's treatment was recorded, as were contact details of health professionals involved in their care and follow-up schedules. Patients were guided to nominate up to three goals for their future well-being and assisted to devise an action plan to achieve these. The HNCP was given to the patient and a copy was forwarded to their primary care physician. One hundred and nine patients were randomised after definitive curative intent treatment, 36 to HNCP, 36 to receive information about survivorship, and 37 to usual care. The primary outcome, analysed by intention-to-treat, was change in quality of life measured by the FACT-H&N from baseline to 6-month follow-up. RESULTS: Quality of life of all groups decreased at 3 months but was close to baseline at 6 months. Compared with the usual care group, the only statistically significant mean difference at 6 months was for the information group on the physical well-being domain (mean difference 0.4, 95% - 1.8, 2.6, p < 0.05). CONCLUSIONS: A single-session nurse-delivered intervention is insufficient to improve the quality of life in HNC survivors compared with usual care. Provision of detailed written information about HNC survivorship is associated with improved physical well-being. TRIAL REGISTRATION: ACTRN12613000542796.

Experiência da radioterapia na perspectiva do paciente com câncer de cabeça e pescoço: revisão integrativa / Radiotherapy experiences from the perspective of head and neck cancer patients: integrative literature review / Experiencia del la radioterapia en la perspectiva del paciente con câncer de cabeza y cuello: revisión integrativa

Objective: The study's purpose has been to summarize the knowledge about primary studies that investigated radiotherapy experiences from the perspective of head and neck cancer patients. Methods: It is an integrative literature review. Results: The final sample consisted of 13 studies that were published from 1998 to 2015. Through the studies thematic analysis were identified four major themes, as follows: "physical consequences of radiotherapy", "psychological and emotional repercussions of radiotherapy", "lack of information about the treatment and posture of the health professional regarding the treatment adverse effects" and "support networks". Conclusion: The studies showed that the radiotherapy treatment had important negative repercussions in the patients' life regarding the reactions and readjustments, and also the roles played family wise, all due to the treatment. There was also an important knowledge gap on the subject, then demonstrating the need for new studies with a qualitative approach, aiming to better understand this experience, therefore, producing care improvement

Objetivo: Sintetizar o conhecimento de estudos primários que investigaram a experiência da radioterapia, na perspectiva do paciente com câncer de cabeça e pescoço. Método: Revisão integrativa da literatura. Resultados: Amostra final composta por 13 estudos publicados entre 1998 a 2015. Pela análise temática dos estudos foram identificados quatro temas maiores: "repercussões físicas da radioterapia", "repercussões psicológicas e emocionais da radioterapia", "falta de informação sobre o tratamento e a postura do profissional de saúde perante os efeitos adversos do tratamento" e "redes de apoio". Conclusão: Os estudos evidenciaram que o tratamento radioterápico trouxe repercussões negativas importantes na vida dos pacientes frente às reações e rearranjos na vida e nos papéis desempenhados dentro da família, decorrentes do tratamento. Verificou-se também uma lacuna importante de conhecimento sobre a temática, demonstrando a necessidade de novos estudos, com abordagem qualitativa, para melhor compreensão desta experiência, refletindo em aprimoramento da assistência

Objetivo: Sintetizar el conocimiento de estudios primarios que investigaron la experiencia de la radioterapia, en la perspectiva del paciente con cáncer de cabeza y cuello. Método: Revisión integrativa de la literatura. Resultados: La muestra final consistió en 13 estudios publicados entre 1998 y 2015. En el análisis temático de los estudios se identificaron cuatro temas más grandes: "repercusiones físicas de la radioterapia", "repercusiones psicológicas y emocionales de la radioterapia", "falta de información sobre el tratamiento y la la postura del profesional de la salud ante los efectos adversos del tratamiento y las redes de apoyo. Conclusión: Los estudios evidenciaron que el tratamiento radioterápico trajo repercusiones negativas importantes en la vida de los pacientes frente a las reacciones y reajustes en la vida y en los papeles desempeñados dentro de la familia, derivados del tratamiento. Se verificó también una laguna importante de conocimiento sobre la temática, demostrando la necesidad de nuevos estudios, con abordaje cualitativo, para una mejor comprensión de esta experiencia, reflejando en el perfeccionamiento de la asistencia

Head and Neck Cancer: Identifying Depression as a Comorbidity Among Patients.

Patients with head and neck cancer (HNC) are at high risk for developing depressive symptoms and a major depressive disorder as comorbidities. Depression can affect quality of life (QOL), with data indicating an associated increased risk of recurrence and mortality for patients with HNC. The purpose of this article is to urge oncology nurses to consider depression as an important comorbidity in the care plan for patients with HNC. Resources allocated for depression prevention and screening can decrease symptoms, the incidence of suicidal ideation, and healthcare-associated costs while improving QOL and mortality.

Advance Care Planning and End-of-Life Issues in Head and Neck Cancer.

Advance Care Planning and End of Life discussions are critical in all cancers but are often overlooked or delayed. Head and Neck Cancer patients have the added stigma of visible morbidity and negative quality of life issues. We present a case example and discussion of these issues in the Head and Neck cancer clinic.

Cuidado à pessoa com ferida oncológica: educação permanente em enfermagem mediada por tecnologias educacionais / Cuidado a la persona con herida oncológica: educación permanente en enfermería mediada por tecnologías educacionales / Care for the person with oncological wound: permanent education in nursing mediated by educational technologies

Resumo OBJETIVO Reconhecer as tecnologias educacionais utilizadas no processo de atualização dos enfermeiros no cuidado à pessoa com ferida oncológica de cabeça e pescoço. MÉTODOS Pesquisa qualitativa, exploratório-descritiva. Realizada com 12 enfermeiros, em um centro de referência oncológica do sul do país, em julho/2017. Por meio de uma entrevista semiestruturada e dados analisados pela Análise Temática de Minayo. RESULTADOS Resultou-se em duas categorias: "As implicações da atualização do enfermeiro" e "O uso de tecnologias educacionais no cotidiano do enfermeiro". Destaca-se neste contexto, a escassez da abordagem do conteúdo na formação dos enfermeiros, a importância da atualização dos profissionais por meio da educação permanente, evidenciando a pouca utilização de recursos tecnológicos para esta finalidade. CONCLUSÃO Sugere-se a integração do uso de tecnologias com a educação permanente, a fim de alcançar os diversos benefícios reconhecidos na prática profissional.

Resumen OBJETIVO Reconocer cómo las tecnologías educativas no se actualizan y no se preocupan por la oncología de cabeza y cuello. MÉTODOS Investigación cualitativa, exploratorio-descriptiva. Realizada con 12 enfermeros, en un centro de referencia oncológica del sur del país, en julio / 2017. Por medio de una entrevista semiestructurada y datos analizados por el Análisis Temático de Minayo. RESULTADOS Resultados de dos categorías: "Las técnicas de la actualización del enfermero" y "El uso de tecnologías educativas en el cotidiano del enfermero". Se destaca en este contexto una versión del presente en la formación de los estudiantes, ya que los datos de la enseñanza media son permanentes, evidenciando una pequeña utilización de recursos tecnológicos para esta finalidad. CONCLUSIÓN Se sugiere una integración del uso de tecnologías con la educación permanente, a fin de tornarse popular en la práctica profesional.

Abstract OBJECTIVE To recognize how educational technologies are not up-to-date and do not care about head and neck oncology. METHODS Qualitative, exploratory-descriptive research. Held with 12 nurses, at a cancer reference center in the south of the country, in July/2017. Through a semi-structured interview and data analyzed by Minayo Thematic Analysis. RESULTS Results of two categories: "The techniques of updating the nurse" and "The use of educational technologies in the nurses' daily life". In this context, a version of the present in the training of students stands out, since the data of secondary education are permanent, evidencing a small use of technological resources for this purpose. CONCLUSION It is suggested to integrate the use of technologies with lifelong education in order to become popular in professional practice.

Câncer de cabeça e pescoço: a comunicação e os seus significados / Head and neck cancer: communication and its meanings

Objetivo: compreender a comunicação e os seus significados à luz da ótica dos profissionais da Enfermagem cuidadores de pessoas com câncer de cabeça e pescoço. Métodos: se trata de um estudo qualitativo, exploratório, descritivo, por método de estudo de caso, com profissionais da equipe de enfermagem que cuidaram de pessoas com câncer de cabeça e pescoço/CCP. Coletaram-se os dados por meio de entrevista semiestruturada gravando-as com a utilização de recursos de mídia eletrônica. Transcreveram-se e se analisaram as entrevistas pela técnica de Análise de Conteúdo na modalidade Análise Temática, apresentando-se em categorias. Resultados: emergiram-se quatro eixos temáticos: Adaptação para a comunicação; A comunicação empática; A comunicação para o cuidado; Mecanismos de defesa diante das más notícias. Conclusão: considera-se a comunicação um dos postos-chaves para a obtenção do sucesso nos cuidados prestados à pessoa com CCP, um instrumento de trabalho para a eficiência de uma assistência humanística e que traz o sentido de aproximação das relações estreitas. Têm-se, quando a comunicação ocorre de forma efetiva, repercussões positivas para o doente e contribui-se para a execução do cuidado e tratamento da pessoa com CCP.(AU)

Head and Neck Cancer Survivors: Specific Needs and Their Implications for Survivorship Care Planning.

BACKGROUND: Head and neck cancer (HNC) survivors experience significant sequelae of treatment, including long-term physical side effects and ongoing cancer surveillance. OBJECTIVES: The aim of this study is to understand patients' survivorship knowledge gaps and supportive care needs. METHODS: Through an anonymous cross-sectional survey, the authors evaluated 41 HNC survivors' knowledge regarding post-treatment issues. FINDINGS: Patients had undergone a variety of treatment modalities.

Support Needs of People With Head and Neck Cancer Regarding the Disease and Its Treatment.

OBJECTIVES: To provide insight into people's experiences in dealing with the consequences of head and neck cancer (HNC) in daily life and their needs for self-management support. SAMPLE & SETTING: 13 people with HNC who were successfully treated in the Department of Radiation Oncology at the Erasmus MC Cancer Institute in Rotterdam, the Netherlands. METHODS & VARIABLES: Two focus groups and six individual interviews; data were analyzed with directed content analysis. RESULTS: Most patients wished to receive professional support for dealing with post-treatment consequences. Apart from physical complaints, patients had difficulties in dealing with the emotional aspects of HNC and its treatment and struggled with building self-confidence to move on with their lives. Patients mentioned the importance of relatives being there for them but complained that their needs were not always met. Support from fellow patients was valued for their empathetic capacity. IMPLICATIONS FOR NURSING: Nurses must provide self-management support that meets people's integral needs inherent in living with the consequences of HNC, particularly in the initial post-treatment period. Practical interventions could be useful.

Consulta de enfermagem na radioterapia de câncer de cabeça e pescoço: análise dentro do conceito custo-utilidade em saúde / Nursing consultation in the head and neck cancer radiotherapy: a cost-health utility relationship analysis / Consulta de enfermería en la radioterapia de cáncer de cabeza y cuello: análisis dentro del concepto costo-utilidad en salud

Objetivo: Descrever o uso do Questionário de Qualidade de Vida da Universidade de Washington, específico para Câncer de Cabeça e Pescoço, na consulta de enfermagem em Radioterapia. Método: Estudo transversal, prospectivo, de abordagem quantitativa do tipo descritiva-exploratório com 10 pacientes em radioterapia de cabeça e pescoço atendidos num Serviço de Radioterapia de um Hospital Universitário, entre 35 a 70 anos de idade, em início de radioterapia, com estadiamentos: III, IVA, IVB ou IVC, entre agosto e dezembro de 2016. CEPHUPE parecer 1.649.577. Resultados: A diferença de utilidade encontrada no início e ao final do tratamento foi importante para quantificar o impacto da consulta de enfermagem. O aumento da Utilidade acompanhou a diminuição dos eventos adversos da terapêutica, durante a consulta de Enfermagem. Conclusão: Este estudo possibilitou ao enfermeiro, a utilização do conceito de Utilidade para quantificar e acompanhar a melhora da Qualidade de vida, nas consultas de Enfermagem na Radioterapia

Objetivo: Describir el uso del Cuestionario de Calidad de Vida de la Universidad de Washington, específico para Cáncer de Cabeza y Cuello, en la consulta de enfermería en Radioterapia. En el presente trabajo se analizaron los resultados obtenidos en el análisis de los resultados obtenidos en el estudio de los resultados obtenidos en el estudio, III, IVA, IVB o IVC, entre agosto y diciembre de 2016. CEPHUPE opinión 1.649.577. Resultados: La diferencia de utilidad encontrada al inicio y al final del tratamiento fue importante para cuantificar el impacto de la consulta de enfermería. El aumento de la Utilidad acompañó la disminución de los eventos adversos de la terapéutica, durante la consulta de Enfermería. Conclusión: Este estudio posibilitó al enfermero, la utilización del concepto de Utilidad para cuantificar y acompañar la mejora de la Calidad de vida, en las consultas de Enfermería en la Radioterapia

Objective: This study aimed to describe the use of the University of Washington Quality of Life Questionnaire, limited to head and neck cancer, in nursing consultation applied to radiotherapy. Methods: A cohort and prospective study with a descriptive/exploratory quantitative approach was carried out with 10 patients under head and neck radiotherapy assisted at the Radiotherapy Service in a University Hospital, aged from 35 to 70 years old, at the treatment onset and in the cancer stages III, IVA, IVB or IVC from August to December 2016. Results: The difference in utility in the start and final stages of the treatment was important to quantify the nursing consultation impact. The Utility increased as the adverse events of therapeutics decreased during the nursing consultation. Conclusion: This study made possible the utilization of the concept of Utility by the nurses during nursing consultation applied to radiotherapy, in order to quantify and follow up the enhancement of the life quality

A Qualitative Study of Internet Informational Support for Neck Cancer Patients.

Objective To gain insight into neck cancer patients' supportive needs, explore patients' acceptability and preference of function toward an eHealth application, and provide the reference of content formulation of neck cancer application. Methods According to the phenomenological research methods, this study using semi-structured in-depth interview. There were 20 participants, among whom were 8 neck cancer patients, 5 family members and 7 care persons. According to Giorgi data analysis, meaningful content and summarizing the eHealth application module were extracted. Results Data were analyzed for 3 categories of needs (information, management of somatic symptoms, management of psychosocial symptoms) and 4 application functional modules (login, personal center, information support, health online community). Conclusion There are some unmet needs in the supportive care of neck cancer patients. Most survivors were positive towards the proposed eHealth application and expressed that eHealth application can become an assistive tool providing supportive care services for neck cancer patients.

Early experience of a nurse-led clinic in a tertiary centre.

A busy head and neck or oral and maxillofacial (OMFS) National Health Service (NHS) clinic treats patients with many different conditions. A large proportion will have cancer of the head and neck, and they will be at different stages of their treatment. Their clinical needs may be different from a larger group of patients who have been referred through the "two-week wait" referral pathway, and who are present in the same clinic for their biopsy results. We present our early experience of "fast-track" referrals and their potential effect on the overall volume of work. They are only a small number of the patients who are typically seen in a nurse-led clinic.

Informal caregiving in head and neck cancer: caregiving activities and psychological well-being.

The purpose of this study was to quantify the general cancer support activities that long-term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well-being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well-being was assessed by the Depression Anxiety Stress Scales-21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1-19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC-specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck-specific care tasks was a significant predictor of experiencing depression and anxiety.

A Distress Thermometer Intervention for Patients With Head and Neck Cancer
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OBJECTIVES: To investigate the feasibility of an intervention using the National Comprehensive Cancer Network Distress Thermometer and Problem List with nurse-guided follow-up and the effect on depressive symptoms, health-related quality of life, and worry of cancer in patients with head and neck cancer.
. SAMPLE & SETTING: 110 patients with head and neck cancer in a two-arm randomized, controlled trial in an outpatient clinic of a university hospital. 
. METHODS & VARIABLES: Patients were randomized to usual care (n = 57) or the intervention group (n = 53), which consisted of screening with the Distress Thermometer and Problem List plus nurse-guided follow-up lasting about 20 minutes three to four times during 12 months. Intention-to-treat analysis was performed using linear mixed models with outcomes at 6 and 12 months and baseline adjustment.
. RESULTS: The intervention showed moderate compliance and acceptable session duration. Intervention participants were satisfied with nurses' care. Depressive symptoms, health-related quality of life, and worry of cancer were not significantly different in the two treatment groups. The intervention seemed feasible in clinical practice, but no effects on patient outcomes were seen.
. IMPLICATIONS FOR NURSING: Patients with head and neck cancer appreciated the opportunity to discuss their problems and challenges with a nurse. Nurses supported patients with basic psychosocial care, minor interventions, and referral possibilities.

Incorporating Multiple Perspectives Into the Development of an Electronic Survivorship Platform for Head and Neck Cancer.

PURPOSE: To improve the care of survivors of head and neck cancer, we developed the Head and Neck Survivorship Tool: Assessment and Recommendations (HN-STAR). HN-STAR is an electronic platform that incorporates patient-reported outcomes into a clinical decision support tool for use at a survivorship visit. Selections in the clinical decision support tool automatically populate a survivorship care plan (SCP). We aimed to refine HN-STAR by eliciting and incorporating feedback on its ease of use and usefulness. METHODS: Human-computer interaction (HCI) experts reviewed HN-STAR using think-aloud testing and the Nielsen Heuristic Checklist. Nurse practitioners (NPs) thought aloud while reviewing the clinical decision support tool and SCP and responded to an interview. Survivors used HN-STAR as part of a routine visit and were interviewed afterward. We analyzed themes from the feedback. We described how we addressed each theme to improve the usability of HN-STAR. RESULTS: Five HCI experts, 10 NPs, and 10 cancer survivors provided complementary usability insight that we categorized into themes of improvements. For ease of use, themes included technical design considerations to enhance user interface, ease of completion of a self-assessment, streamlining text, disruption of the clinic visit, and threshold for symptoms to appear on the SCP. The theme addressing usefulness was efficiency and comprehensiveness of the clinic visit. For each theme, we report revisions to HN-STAR in response to the feedback. CONCLUSION: HCI experts provided key technical design insights into HN-STAR, whereas NPs and survivors provided usability feedback and clinical perspectives. We incorporated the feedback into the preparation for additional testing of HN-STAR. This method can inform and improve the ease of use and usefulness of the survivorship applications.

Cuidado clínico ao homem em cirurgia oncológica do trato aerodigestivo superior com necessidade de saúde e qualidade de vida / Clinical care to the man in oncological surgery of the upper aerodigestive tract with need of health and quality of life

Esta tese tem como objeto identificar a necessidade de cuidado e qualidade de vida de homens em tratamento cirúrgico oncológico do trato aerodigestivo superior. Trata-se da identificação das necessidades de cuidado e qualidade de vida relacionada à saúde dos homens antes e após o tratamento cirúrgico e da avaliação dos domínios que afetaram a qualidade de vida, utilizando o questionário da Universidade de Washington (UW-QOL) para construção de uma cartilha de cuidado para as necessidades de saúde e qualidade de vida. Com bases na fundamentação teórico-conceitual de Masculinidades de Connell, de Cuidado de Coelho e de Cotidiano de Michel Certeau, utilizou-se o método misto, com 58 homens em tratamento cirúrgico. A coleta de dados aconteceu entre fevereiro e dezembro de 2016, no Hospital do Câncer I, Rio de Janeiro, Brasil, respeitando as questões éticas com CAAE n° CEP-INCA 52647116430015274. Foi realizada entrevista semiestruturada com aplicação do questionário da (UW-QOL - 4° versão, 2006) para coleta de dados. Os resultados quantificáveis foram analisados pela estatística descritiva com auxílio do software R, e os qualificáveis, pela técnica de Análise de Conteúdo Temático de Bardin. Emergiram três categorias temáticas. A primeira ­ qualidade de vida relacionada à saúde do homem antes da cirurgia ­, caracterizou-se por atitudes positivas e negativas, já que qualidade de vida significava: poder trabalhar; ganhar dinheiro para sustentar a família; satisfação, como alimentar-se pela boca; comer churrasco e mastigar. Por outro lado, as atitudes que levaram o homem ao adoecimento e a genética das neoplasias do trato aerodigestivo superior estão associadas ao fumo, álcool e trabalho em excesso. A segunda categoria ­ qualidade de vida relacionada à saúde do homem após a cirurgia ­ aborda o contexto da cirurgia com aspectos positivos, renascimento por saberem que não tinham mais o câncer e sentir-se curados e não sentir mais dor, não ter ficado com limitações físicas e estéticas, além da qualidade de vida. Todavia, houve alterações funcionais orgânicas na fala, mastigação e deglutição associadas à cirurgia, que mudaram o cotidiano do homem. Logo, o construto de qualidade de vida antes e após a cirurgia foi caracterizado como subjetivo/objetivo e mulifatorial, por envolver dimensão de aspecto positivo e negativo à medida que o homem percebia a satisfação, ou não, das necessidades de saúde e as alterações de atividades laborais de vida diária. Na terceira categoria ­ necessidade de cuidado da saúde do homem em tratamento cirúrgico ­, os aspectos mais afetados foram os psicobiológicos e as necessidades de cuidado com alimentação via sonda gástrica e de informação sobre vida íntima, com demanda de cuidado integrado com a equipe de saúde. Nos resultados quantificaveis com aplicação do questionário UW-QOL, evidenciou-se que as médias mais altas foram os domínios "recreação" e "dor", e as mais baixas, "mastigação" e "fala". O pior resultado da melhor resposta possível do escore cem foram os domínios: "fala", "aparência" e "deglutição", com alterações funcionais e estéticas causando interferência na qualidade de vida. Logo, os homens lutaram pela vida com coragem, criatividade, com enfrentamento para o cuidado a saúde ou não. Mesmo com diminuição das atividades formais, buscaram o trabalho informal, persistindo na produção laboral como dimensão de masculinidade hegemônica.

This thesis intends to identify the needs of care and quality of life of men undergoing oncological surgical treatment of upper aerodigestive tract. It approaches the need for care and health-related quality of life of men before and after surgical treatment and the assessment of fields that affect the quality of life, using the University of Washington questionnaire (UW-QOL) for producing a primer of care for the needs of health and quality of life. Based on theoretical-conceptual grounds of Masculinities by Connell, Care by Coelho and Daily Life by Michel Certeau, the mixed method was used, with 58 men in surgical treatment. Data collection took place between February and December 2016, at Cancer Hospital I, Rio de Janeiro, Brazil, in compliance with the ethical issues of CAAE n° CEP- INCA 52647116430015274. Semi-structured interview was carried out with application of UW-QOL questionnaire, 4th version, 2006) for data collection. The quantifiable results were analyzed using descriptive statistics with R software assistance, and qualifiable results were analyzed using Badin ́s Thematic Content Analysis. Three themes emerged. The first, health- related quality of life of man before surgery, was characterized by positive and negative attitudes, since quality of life meant: capable to work, earn money to support the family, satisfaction with feeding by mouth, eat barbecue and chew. On the other hand, the attitudes that led to illness and genetics of upper aerodigestive tract neoplasms are associated to smoking, alcohol and excess work. The second category, health-related quality of life of man after surgery, approaches the context of surgery with positive aspects and the revival because they know that no longer had cancer and feel healed and feel no more pain, with no aesthetic and physical limitations, and a quality of life. However, there have been changes in the organic functional speech, chewing and swallowing associated with surgery, which changed the daily life of the men. Therefore, the construct of quality of life before and after surgery was characterized as subjective/objective and multifatorial, involving positive and negative aspect dimension, as the man realized the satisfaction, or not, of health needs and the changes of labour activities of daily life. In the third category, need for health care in surgical treatment, the most affected aspects were the psychobiological care needs with gastric tube feeding and information about private life, demanding integrated care from the health team. In the quantifiable results with application of UW-QOL questionnaire, it was shown that the higher means were the domains "amusement" and "pain", and the lowest were "chewing" and "talk". The worst result of the best possible answer of 100 score were the fields "speak", "appearance" and "swallowing" with functional and aesthetic changes causing interference on quality of life. Therefore, the men fought for life with courage, creativity, coping for health care or not. Even with reduction of formal activities, the men sought the informal work, persisting in the work production as the hegemonic masculinity dimension.

El objeto de esta tesis es identificar la necesidad de atención y calidad de vida de los hombres en tratamiento quirúrgico oncológico del tracto aerodigestivo superior. Trata la identificación de la necesidad de atención y calidad de vida relativa a la salud de hombres antes y después del tratamiento quirúrgico y evaluación de los campos que afectan la calidad de vida. Adopta el cuestionario de la Universidad de Washington (UW-QOL) para la construcción de una cartilla para satisfacer las necesidades de salud y calidad de vida. Basándose en la fundamentación teórico-conceptual de la masculinidad de Connell, de la atención de Coelho y de la vida cotidiana de Michel Certeau, se utilizó el método mixto, con 58 hombres en tratamiento quirúrgico. La recolección de datos ocurrió entre febrero y diciembre de 2016, en el Hospital del cáncer I, Río de Janeiro, Brasil, en cumplimiento de los aspectos éticos CAAE n° CEP-INCA 52647116430015274. La entrevista semiestructurada se realizó con la aplicación del cuestionario (UW-QOL- versión 4, 2006) para la recolección de datos. Los resultados cuantificables fueron analizados por medio de la estadística descriptiva con la ayuda de software R y los resultados cuantificables, por medio de la técnica de análisis de contenidos temáticos de Bardin. Tres categorías temáticas surgieron. La primera categoría - calidad de vida relacionada con la salud del hombre antes de la cirugía ­ se caracterizó por actitudes positivas y negativas, porque la calidad de vida significa: se puede trabajar; ganar dinero para mantener a su familia; satisfacción, como la alimentación por vía oral; comer barbacoa y masticar. Por otra parte, las actitudes que condujeron al hombre a la enfermedad y genética de neoplasias del tracto aerodigestivo superior se asocian a fumar, el alcohol y el exceso de trabajo. La segunda categoría ­ calidad de vida relacionada con la salud del hombre después de la cirugía ­ analiza el contexto de la cirugía con aspectos positivos, un renacimiento porque saben que ya no tienen cáncer y se sienten curados y no sienten más dolor, no quedam con limitaciones estética y física y tienen calidad de vida. Sin embargo, ha habido cambios en el discurso funcional orgánico, masticación y deglución asociados con la cirugía, que cambió la vida cotidiana del hombre. Por consiguiente, el constructo de calidad de vida antes y después de la cirugía fue caracterizado como subjetivo/objetivo y mulifatorial, con dimensión de los aspectos positivos y negativos en la medida que el hombre entendía la satisfacción, o no, de las necesidades de salud y los cambios de las actividades laborales de la vida cotidiana. En la tercera categoría ­ necesidad de atención de salud en el tratamiento quirúrgico, los más afectados fueron los aspectos psicobiológicos y el cuidado de las necesidades con alimentación por sonda gástrica e información sobre la vida privada, con demanda de atención integrada con el equipo de salud. En los resultados cuantificables con aplicación del cuestionario UW-QOL, se evidenció que la media más alta fueran los dominios de "recreación" y "dolor" y la más baja, "masticar" y "hablar". El peor resultado de la mejor respuesta posible de la puntuación 100 fueron los campos: "hablar", "apariencia" y "deglución", con cambios funcionales y estéticos que causan interferencia en la calidad de vida. Por consiguiente, los hombres lucharon por la vida con valentía, creatividad, sobrellevando la atención de la salud o no. A pesar de la reducción de las actividades formales, los hombres buscaran el trabajo informal, que persiste en la producción laboral como dimensión de la masculinidad hegemónica.