Objectives: Available studies largely and consistently indicate that children with Attention Deficit Hyperactivity Disorder (ADHD) experience significantly impaired quality of life (QoL). More research is required to enable an enhanced understanding of factors which contribute to the QoL of children with this diagnosis. In relation to children with ADHD, this thesis had two main aims: to review the extent to which children and their parents agree in their assessments of the child’s QoL; and to examine the impact of parent stress on the child’s QoL from both parent and child perspectives. Method: A systematic review of studies reporting matched parent-proxy reported and child self-reported quantitative QoL measures is described in journal article 1. Journal article 2 presents the findings from a cross-sectional, quantitative study involving a matched sample of 45 children with a diagnosis of ADHD, and their parents. Correlation and multiple regression analyses examine the relationship between parent stress and each of the informants’ ratings of the child’s QoL. Results: The findings of the systematic review indicated that in a clear majority of studies, children rated their QoL more highly than their parents. However, cautious interpretation is required as some of the studies were of poor methodological quality. In the empirical study, parent stress emerged as a significant predictor of parent proxy-ratings of child QoL, but not of self-rated QoL. Parents who rated their child’s QoL lower that their children had higher perceived stress than parents who rated their child’s QoL higher than their children. There were no significant differences in self-rated or parent-rated QoL between children with ADHD and children with a learning disability or with an Autism Spectrum Disorder. In line with some previous research, agreement was poorer on psychosocial domains than physical domains. However, due to the relatively small sample size, the empirical study requires replication. Conclusions: The results of the systematic review suggest that parent and child ratings of the child’s QoL are not interchangeable in the context of ADHD. Possible explanations for this trend are discussed. The empirical study suggests that parent stress negatively impacts on children with ADHD, and that it is likely that children’s self-reports are affected by their impaired reflective capacity. Clinical implications and recommendations for future research are discussed in relation to both articles.

Du fait des récentes avancées thérapeutiques, de plus en plus de jeunes se trouvent actuellement en rémission complète de cancer. Cette période entre les traitements et la guérison est pourtant peu évoquée dans la littérature. Elle s’accompagne assez souvent de séquelles iatrogènes, de difficultés de réinsertion sociale ou de troubles psychopathologiques. (Oeffinger et Wallace, 2006). Cette étude a pour principal objectif d’appréhender l’expérience spécifique de la rémission complète par l’adolescent et ses parents. Notre hypothèse principale est qu’ils connaissent des difficultés psychosociales durant cette période.Notre recherche a été menée auprès de 38 dyades parents- adolescents en rémission complète de cancer hématologique au sein des hôpitaux de Toulouse, Montpellier et Bordeaux. Nous avons évalué les représentations de santé, l’anxiété, les stratégies d’adaptation, les relations familiales, le soutien social perçu, les relations avec le corps médical et la qualité de vie chez l’adolescent et son parent. Nous avons mené des entretiens semi-directifs auprès de l'adolescent ainsi qu'un de ses parents avec un suivi longitudinal au cours de trois temps de la rémission : lors du bilan de fin des traitements, lors de la première visite de rémission, lors de la troisième visite de surveillance. L’adolescent et les parents ont rempli trois questionnaires respectifs: l ’Ok-Ado, le QLACS, et le STAIC pour l’adolescent ; et pour le parent: le GHQ-28, le QSSP et le STAI.Le bilan de fin de traitements est un moment anxiogène pour l’adolescent et ses parents qui ont surtout des représentations négatives de la maladie et des perceptions plus positives de la rémission et du suivi médical. Les représentations de la santé et l’anxiété de l’adolescent varient peu au cours du temps aussi bien pour les adolescents que les parents. Lors de la première visite de surveillance, les adolescents sont en majorité dans le refus de parler de leur maladie, avec une désillusion de la rémission et de la surveillance médicale. Ils connaissent une diminution de leur qualité de vie avec une plus grande insatisfaction vis-à-vis du soutien parental, un repli sur soi et un recours à l’hypervigilance. Des attitudes parentales de surprotection et d’hypervigilance vis-à-vis des adolescents perdurent. Les parents souffrent d’une diminution de leur soutien familial. La troisième visite est marquée par une importante dénégation de la maladie des adolescents qui s’accompagne d’un épuisement émotionnel. Les adolescents et les parents ont des représentations négatives du suivi médical. Les parents sont plus dans le contrôle émotionnel et connaissent une diminution de leur qualité de vie. La dyade évoque plus les troubles physiques à ce stade. Le bilan de fin de traitements semble être un temps propice pour exprimer et évaluer leurs représentations de la maladie, de la rémission, de la santé qui influent sur les niveaux d’anxiété. Nous pouvons souligner un contre- coup pour l’adolescent lors de la première visite de surveillance où il semble prendre conscience des risques de santé. Ce temps est l’occasion pour les parents de s’autoriser à exprimer leur détresse émotionnelle, ce qui améliore leur qualité de vie. Un dispositif de sortie de maladie intégrant la possibilité d’un soutien psychologique pourrait permettre un dépistage et une prise en charge des difficultés post traitements des adolescents et de leur famille. / Due to recent therapeutics progress, more and more young people are now in complete cancer remission. However, this period between treatment and healing is rarely mentioned in the literature. This period often goes with iatrogenic sequelae, rehabilitation difficulties or psychopathological disorders (Oeffinger and Wallace, 206).This study has for main objective to apprehend the specific experience of complete remission for the adolescent and his parents. Our principal hypothesis is that psychological difficulties are important during this period.Our study included 38 dyads (parents-adolescents) with total remission of hematologic cancer from Toulouse, Montpellier and Bordeaux hospitals. We have assessed health representations, anxiety, coping strategies, family relationships, perceived social support, relationships with medical profession and quality of life for the adolescent and his parent. We have led semi-directed interviews with the adolescent and one of his parent on a longitudinal follow-up within three steps of remission: during end treatment check-up, during first remission visit, then for the third monitoring visit. Adolescent and his parents have filled out three questionnaires: the Ok-Ado, the QLACS, and the STAIC for the adolescent; and for the parent: the GHQ-28, the QSSP and the STAI.The consult which take place at the end of treatment is an anxious moment for the adolescent and his parents. Indeed their representations of the disease are negatives, while their representation of the medical follow-up and their remission are more positive. Representations of health and anxiety vary little over time both for adolescents and parents.During the first consult after treatment, majority of adolescents don’t want to talk about their disease. Disillusion about remission and medical follow up are important. They’re facing decrease in quality of life with a major dissatisfaction with parental support, a withdrawal and tendency to increase their vigilance. Parents suffer from a decrease of their family support.During the third visit, denial of the disease is considerable and often associated with moral exhaustion. Adolescents and parents have negative representations of medical follow-up. Parents are more into emotional control and experience a decrease of their quality of life. At this stage, the dyad shows mostly physical disorders.End treatment checkup seems to be the perfect time to evaluate their representations of the disease, of remisssion and health which contribute to anxiety. We can underline repercussions for the adolescent during first surveillance visit where he seems to take conscience about health risks. This consult is the opportunity for the parents to express their emotional distress, which improve their quality of life. A psychological follow-up ending illness organized at the end of treatment would ensure to screen and to take care of the difficulties encountered by the patient and his family.

Atualmente, poucos estudos avaliam o impacto que as doenças bucais, assim como as reabilitações protéticas, desempenham sobre a qualidade de vida geral dos indivíduos. O objetivo desta pesquisa foi investigar a relação entre variáveis clínicas de saúde bucal com os domínios físico, psicológico, de relações sociais e de meio ambiente da qualidade de vida geral. Neste estudo transversal, 720 indivíduos entre 50 e 74 anos residentes de três distritos sanitários de Porto Alegre, sul do Brasil, participaram da pesquisa, sendo selecionados através de amostragem proporcional de múltiplos estágios. As entrevistas e exames clínicos foram realizados nos domicílios dos sujeitos por 4 duplas de examinadores e anotadores previamente treinados e calibrados. Os dados foram coletados seguindo duas etapas: 1) Entrevista usando questionário estruturado sobre dados sociodemográficos e o World Health Organization Abbreviated Instrument for Quality Of Life Assessment (WHOQOL-BREF) para avaliação da qualidade de vida; 2) Exame clínico bucal sob luz artificial, utilizando-se índices e critérios recomendados pela Organização Mundial da Saúde (OMS) e complementados pelo Levantamento Epidemiológico SB/Brasil 2000. Para efeito de análise os escores de qualidade de vida foram categorizados em: baixo (≤ mediana) e alto (> mediana). A associação entre os desfechos e os fatores em estudo foi analisada através de Regressão de Poisson múltipla, com ajuste para variância robusta, e função svyset programada seguindo os estágios da pesquisa. Um maior escore no domínio físico foi associado ao uso de prótese superior e com nível educacional. No domínio psicológico, um escore mais elevado foi associado ao nível educacional. Um maior escore no domínio de relações sociais esteve associado ao CPOD, gênero e nível educacional. Por fim, no domínio meio ambiente, maiores escores estiveram associados ao uso e necessidade de prótese inferior, idade e nível educacional. Pode-se concluir que nesta população a qualidade de vida geral está associada a variáveis clínicas de saúde bucal como CPOD, uso e necessidade de prótese. / Currently, there are few studies assessing the impact of oral diseases and prosthetic rehabilitation on the general quality of life of individuals. The objective of this study was to investigate the relationship between oral health clinical variables and the following domains of general quality of life: physical, psychological, social relations, and environment. This cross-sectional study involved 720 individuals between 50 and 74 years living in three health districts of Porto Alegre, southern Brazil. The subjects were selected using multi-stage proportional sampling. The interviews and clinical examinations were performed at home by four pairs of researchers previously trained and calibrated. Data were collected following two steps: 1) interview using a structured questionnaire on demographic data and the World Health Organization Abbreviated Instrument for Quality of Life Assessment (WHOQOL-BREF) to assess quality of life; 2) oral clinical examination under artificial light, using rates and criteria recommended by the World Health Organization (WHO) and complemented with the Epidemiological Survey SB/Brazil 2000. For the analysis, the scores of quality of life were categorized as low (≤ median) and high (> median). The association between the outcomes and the factors studied was analyzed using Poisson Multiple Regression, with adjustment for robust variance, and svyset function following the stage of the study. A higher score in the physical domain was associated with the use of upper prosthesis and with higher educational level. In the psychological domain, a higher score was associated with the educational level. A higher score in the social relations domain was associated with the DMFT, gender and educational level. Finally, in the environment domain, higher scores were associated with use and need of lower prosthesis, age and educational level. Finally, in the environment domain, higher scores were associated with use and need of lower prosthesis, age and educational level. It was concluded that this population's quality of life is associated to oral health clinical variables such as DMFT, use and need of prosthesis.

Esta dissertação se caracteriza como uma problematização da qualidade de vida enquanto uma importante questão que atravessa de diversos modos nossa atualidade. Essa questão é trabalhada no texto em três momentos distintos e complementares, em cada qual se busca compor e decompor uma pergunta que atue como chave de acesso a um nível de complexidade específico e possibilite saltos de compreensão de um momento ao outro. No primeiro momento a qualidade de vida é apresentada como uma expressão de uso comum e generalizado, de modo que o texto se movimenta em um percurso descritivo dos distintos usos e significados dessa expressão. No segundo momento essa falação sobre qualidade de vida é tensionada para que se tornem visíveis alguns enunciados que circulam, se repetem e se transformam num campo aberto de disputas, em função do qual essa qualidade de vida é produzida como uma questão que importa. No terceiro momento essa produção da qualidade de vida como uma questão que importa e que precisa ser gerida é pensada a partir do conceito de dispositivo, e o texto caminha assim como um percurso analítico por entre as distintas linhas que compõem esse dispositivo de qualidade de vida até alcançar as linhas de subjetivação, como limite do dispositivo, como resistência e criação. Após esses três momentos, o texto salta para um interstício poético-filosófico composto por fragmentos de aforismos nietzscheanos que tocam o tema da grande saúde, na busca por uma perspectiva que explore linhas de fuga e de criação pelas quais seja possível pensar e experimentar outros lugares e outros modos para uma vida com qualidades. Ao fim do percurso o texto é apresentado em um pequeno ensaio, que pode ser lido tanto no fim quanto no início da dissertação, no qual é esboçado um contraste entre a qualidade de vida e uma vida com qualidades. / This dissertation is characterized as a problematization of the quality of life as an important issue that permeates in many ways our actuality. This issue is analyzed in the text in three different moments, in each the effort is to build up and down a question that works as an access key to specific complexity levels and that allows jumps in understanding from one moment to another. At the first moment the quality of life is presented as a widely used expression, and the text goes as a description of different uses and meanings of this expression. At the second moment this discourses about quality of life are tensioned to render visible some statements that circulates, are repeated and transformed within an open field of disputes, in relation to which this quality of life is produced as an issue that matters. At the third moment this production of quality of life as an issue that matters and that needs to be managed is thought through the concept of dispositif, and the text goes as an analytical route through the distinct lines that composes this dispositif until it reaches the lines of subjectification, as the limit of the dispositif, as resistance and creation. After this discussion in three moments, the text jumps to a poetic-philosophic interstice made of fragments of some nietzschean aphorisms that touches the theme of great health, in a search for some perspective that explores some possible lines of escape and creation by which it is possible to experiment another places and modes for a life with qualities. At the end of this track the text is presented through a little essay, that can be read both at the end or at the beginning of the text, in which it is sketched a contrast between the quality of life and a life with qualities.

TITLE: Palliative Care: Viewpoints from Nurses Palliative Care has been described as care that includes the physical, intellectual, emotional, social, and spiritual needs of an individual when they are diagnosed with a serious or life-limiting illness. The ultimate goal of palliative care is to promote the best quality of life possible. Palliative care should be implemented across the lifespan and across different health care settings. The purpose of this study was to describe the perceptions, impact, and meaning of palliative care from the viewpoint of nurses who provide basic palliative care to patients and their families. This study used a qualitative design to investigate the meaning, experiences, and feelings of nurses who provide palliative care in small or critical access hospitals and other agencies in this rural area. Three focus groups and eleven interviews were conducted with nurses working in a variety of agencies from October 2015 to February 2016. The four themes that emerged from the data included inconsistencies, knowledge deficits, communication issues, and emotional responses and rewards to providing palliative care. The themes focused on the need for clarification of the meaning of palliative care, more education on the topic and better communication. The nurses shared that it was rewarding to provide palliative care but identified barriers that they felt should be addressed. Nurses participating in the study did not perceive that they had palliative care at their agencies. Recommendations included that more health education about palliative care be provided to healthcare professionals, the community, and individuals with life-limiting illnesses and their families. Key words: palliative care, quality of life, life-limiting illness, nursing

This qualitative study explored the use of Reiki in improving the quality of life of people living with HIV (PLWH). A purposive sample of seven participants consented to the study. Reiki attunement, self healing and data collection were done over a six-month period. An idiographic approach was used. The participants were interviewed, then underwent Reiki attunement, performed self healing for 21-30 days and were interviewed again. Responses suggest that Reiki therapy had positive outcomes. Illnessspecific symptom relief, increased levels of energy, improved sleeping patterns, decreased anxiety and depression, spiritual awakening and a better ability to handle stressful situations were reported. Reiki therapy enabled the participants to reappraise living with HIV, deal with anger, depression and self-blame. These positive changes led to some of them seeking employment, leaving destructive personal relationships and reconnecting with family members. The researcher strongly recommends further research in this area. / Sociology / (M.A. (Social Behavioural Studies HIV/AIDS))

Made available in DSpace on 2015-07-22T20:50:41Z (GMT). No. of bitstreams: 0 Previous issue date: 2011-02-22 / Contexto: A necessidade de melhor entender as limitações e o sofrimento ligado às doenças mentais é por si só motivação óbvia para avaliação da qualidade de vida dos portadores de esquizofrenia. Objetivo: Avaliar a qualidade de vida dos portadores de esquizofrenia do Ambulatório de Egressos do Hospital Escola Portugal Ramalho. Método: Participaram deste estudo um total de 102 pacientes atendidos no Ambulatório de Egressos do Hospital Escola Portugal Ramalho, com diagnóstico de esquizofrenia confirmado por critérios clínicos já estabelecidos pelo CID – 10, com idade entre 18 e 60 anos de ambos os sexos, residentes em Maceió-Al ou cidades do interior do Estado, que frequentaram o ambulatório por no mínimo dois meses consecutivos. Como instrumento foi utilizado o Perfil de Qualidade de Vida Lancashire. Resultados: Os dados sugerem baixos índices de engajamento em atividades recreativas, laborais e sociais dos participantes. Em relação à variável sexo foram encontrados índices mais baixos nestas atividades na população feminina. Os dados evidenciaram que a população investigada tem dificuldades em manter relacionamentos afetivos e que o início da doença se deu em idades precoces para cerca de metade dos participantes. A esquizofrenia paranoíde foi a mais encontrada, contudo esta foi diagnosticada em níveis semelhantes aos da esquizofrenia não especificada e da esquizofrenia hebefrênica. Conclusão: Em concordância com a literatura, parece existir uma baixa qualidade de vida em esquizofrênicos tanto em itens do componente objetivo (por exemplo, ter atividade laboral e de lazer) como em itens do componente subjetivo (por exemplo, sentir-se só, isolado). Em desacordo com a literatura, os homens referem em vários itens objetivos e subjetivos uma melhor QV do que as mulheres. / Background: The assessment of quality of life of patients with schizophrenia has been used to assess both the outcome of treatment provided but also the role of cultural environment in the lives of patients. This is the first study in Alagoas. Objective: To evaluate outpatients with schizophrenia through the concept of quality of life. Method: Cross sectional analytical study conducted in the 102 Outpatient Service of the public Psychiatric Hospital Portugal Ramalho. Patients were diagnosed as schizophrenics according to ICD – 10 clinical criteria. They were aged between 18 and 60 years for both sexes, and had attended the outpatient service for at least two consecutive months. The present study used the profile of Lancashire Quality of Life. Results: With respect to socio-demographic variables, most patients had no partner and had low income, 75.5% were retired and received some government benefit. Among those who reported as being white, 78% were women, and while among black and mulatto, women were 20% (p = 0.011). As for the aspects of quality of life (QOL) 19.0% of men used the weekends for leisure while only 4.1% of the women did it (p = 0.016), 63.5% of men referred going shopping while only 44% of women did it (p=0.049). Conclusion: In accordance with the literature, there seems to be a lower quality of life in schizophrenia in both the objective component items (for example, have leisure and work activities) as items of the subjective component (eg, feeling alone, isolated). In disagreement with the literature, men reported in several subjective and objective items better QOL than women. / TEDE / BV UNIFESP: Teses e dissertações

Introdução: O vitiligo é uma doença da pele frequente que afeta cerca de 1% da população em todo o mundo. Ocorre em pessoas de qualquer idade ou etnia, e mais da metade dos pacientes desenvolvem a doença antes dos 20 anos de idade. O vitiligo pode afetar negativamente a qualidade de vida (QoL) do paciente. Um questionário de qualidade de vida específico para vitiligo foi desenvolvido e validado na língua inglesa: the vitiligo-specific quality-of-life instrument (VitiQoL). Objetivo: O objetivo deste estudo é avaliar a QoL em pacientes adultos com o VitiQoL e o DLQI e pediátricos com o CDLQI em uma amostra de pacientes com vitiligo no sul do Brasil. Métodos: Na primeira etapa, o instrumento foi traduzido, adaptado culturalmente e validado para o português falado no Brasil (VitiQoL-PB). Após, foram incluídos pacientes selecionados no Ambulatório de Dermatologia do Hospital de Clínicas de Porto Alegre e numa clínica privada de Porto Alegre. Foi realizada amostragem de conveniência de casos consecutivos. A qualidade de vida de pacientes pediátricos foi avaliada com o questionário CDLQI. Em pacientes adultos foram aplicados o VitiQoL – PB e o DLQI. Resultados: Observou-se uma forte correlação entre os escores do total de VitiQoL e o DLQI (r = 0,81; p <0,001). O fator que mais contribuiu para a pontuação final do VitiQoL foi estigma. Em nossa amostra, as mulheres apresentaram escores mais elevados do que os homens (p <0,05). Problemas psiquiátricos foram associados com uma pior qualidade de vida. Na população pediátrica, a mediana do escore do CDLQI foi 3 (intervalo interquartil 1,3-7,3). Houve uma correlação estatisticamente significativa entre a idade da criança e o escore no CDLQI (rs = 0,41, p = 0,044). Não houve diferença entre meninos e meninas (p = 0,219). Conclusão: Este estudo confirma não só que o VitiQoL é fácil de administrar, como também, acrescenta informações importantes sobre o impacto do vitiligo na América do Sul. Instrumentos genéricos são úteis e permitem comparações com outras dermatoses, mas não são suficientemente específicos para detectar nuances na maneira como os pacientes lidam com o vitiligo. A autoestima dos pacientes é muito afetada e a estigmatização está bastante presente. Há grupos de pacientes que são mais vulneráveis ao impacto da doença, como as mulheres, os adolescentes e os pacientes com doenças psiquiátricas. / Background: Vitiligo is a common skin disease that has been reported to affect approximately 1 % of the population worldwide. It affects people of any age or ethnicity, more than half of who develop it before the age of 20 years. Vitiligo can negatively affect patient’s quality of life (QoL). A specific questionnaire for vitiligo has been developed and validated in the English language: the vitiligo-specific quality-of-life instrument (VitiQoL). Objective: The aim of this study was to access the QoL in adult patients through VitiQoL and DLQI and pediatric patients through CDLQI in a sample of patients with vitiligo in Southern Brazil. Methods: In the first phase of the study the instrument was translated, cultural adapted and validated into Brazilian Portuguese (VitiQoL-PB). Then patients were selected from a Dermatological Outpatient Clinic from Hospital de Clínicas de Porto Alegre and from a Private Practice in Porto Alegre. In this study, we used convenience sampling of consecutive cases. The QoL of pediatric patients was performed using the CDLQI questionnaire. In adult patients we applied the VitiQoL – PB and the DLQI. Results: A strong correlation between the scores of the total VitiQoL and DLQI was observed (r = 0.81; p <0.001). The factor that most contributed to the final score of VitiQoL was stigma. In our sample, women had higher scores than men (p<0,05). Psychiatric problems were associated with lower QoL. In the pediatric population, the median score of CDLQI was 3 (interquartile range 1.3 to 7.3). There was a statistically significant correlation between the child's age and the score on CDLQI (rs = 0.41, p = 0.044). There was no difference between boys and girls (p = 0.219). Conclusion: This study confirms that VitiQoL is easy to administer and adds important information about the impact of vitiligo on a South American population. Generic instruments are useful and allow comparisons with other dermatoses, but are not specific enough to detect nuances in how patients deal with the overall vitiligo burden. Self-esteem of patients is greatly affected and stigmatization is very present in the disease. There are groups of patients that are more vulnerable to the impact of the disease, like women, patients with psychiatric diseases and adolescents.

Estudo transversal de base populacional cujo objetivo é investigar a prevalência do impacto odontológico no desempenho diário e sua relação com variáveis demográficas e sociais em indivíduos com 50 anos a 74 anos (n= 720), em três Distritos Sanitários de Porto Alegre-RS. Utilizou-se uma amostragem por múltiplos estágios. Foram realizadas entrevistas domiciliares utilizando um questionário contendo informações sobre aspectos sociais e demográficas e o indicador sócio-dental: “Oral impact on daily performances” (OIDP). Mais da metade dos sujeitos, (57,8%), relataram pelo menos um desempenho diário afetado por problemas bucais. Comer, (36,8%), sorrir, dar risada e mostrar os dentes sem ficar envergonhado (30,7%) e falar claramente (19,6%) foram os desempenhos diários de maior impacto odontológico. Não se observou relação estatisticamente significativa entre o impacto e as variáveis sociais e demográficas. Os principais problemas bucais causadores de impactos foram dentadura mal-ajustada e perda de dentes. A alta prevalência de impacto encontrada demonstra a influência dos problemas bucais no desempenho das atividades diárias dos indivíduos. / Cross-sectional study of population base whose main objective is to investigate the prevalence of dental impacts on daily performance and its relationship with demographic and social variables in individuals aged 50 to 74 years (n = 720) from 3 Health Districts in Porto Alegre-RS. A sample for multiple stages was used. Data were collected through interviews using a questionnaire containing information on social and demographic aspects and the socio-dental pointer: "Oral impact on daily performances” (OIDP). More than half of the subjects (57,8%), reported at least one daily performances affected by oral health problems in this population. Eating (36.8%), smiling , laughing and showing teeth without being ashamed (30,7%) and speaking clearly (19,6%) were the daily performances of the greatest dentistry impact. There was no statistical significant relation between oral impact and socio-demographic variables. The main oral problems causing impacts were ill-fitting dentures and tooth loss. The high prevalence of oral impact which was reported demonstrates the influence of oral problems in the performance of daily activities of the individuals.

Introdução: apesar de haver diversos instrumentos para mensurar a qualidade de vida em pacientes com câncer, há a necessidade de um específico para aqueles que realizaram uma laringectomia em decorrência do câncer de laringe. Suas características são ímpares e os instrumentos gerais não se prestam a captar as peculiaridades do impacto de seu tratamento na comunicação, em especial, pós laringectomia total. Objetivo: adaptar transculturalmente o Self Evaluation of Communication Experiences after Laryngectomy para o português brasileiro. Métodos: Foram procurados os 166 pacientes que realizaram laringectomia total em um hospital universitário do sul do Brasil entre janeiro de 2000 e novembro de 2013. Desses, 53 foram encontrados e 39 concordaram em responder o questionário que foi traduzido da língua inglesa para o português por um profissional da área da saúde e um professor de inglês, retraduzido para o inglês por um profissional da área da saúde e um professor de português (que têm o inglês como língua nativa), aprovado pelo pesquisador que desenvolveu o questionário original e, então, aplicado nos pacientes. A análise dos questionários se deu em duas etapas: a primeira, uma análise qualitativa do entendimento que os pacientes tiveram das questões, da aplicabilidade do instrumento e das suas condições gerais; a segunda, uma análise estatística das respostas, a fim de avaliar a sua fidedignidade. Resultados: Os pacientes que responderam o questionário apresentam uma idade média de 65,41 anos (43-83 anos), sendo predominantemente homens (82,1%). A fala traqueosofágica, comum entre os pacientes laringectomizados de outros países, não é utilizada por nenhum paciente nesse estudo. Por outro lado, é relevante o número de pacientes que não desenvolve nenhum tipo de comunicação oral após a cirurgia (48,7%). Outros meios de comunicação citados foram a fala esofágica e a fala eletrolaríngea (ambos com 25,6%). Através do coeficiente de correção, encontrou-se uma tendência a se ter uma pior qualidade de vida entre os pacientes que não falam (r= 0,241). Sobre a educação formal, 64,1% dos pacientes possui ensino fundamental ou menos; 7,7% ensino médio incompleto; 17,9% ensino médio completo; 2,6% curso técnico; e 7,7% curso superior. O primeiro bloco do questionário – questões gerais – se revelou o menos adequado (r = 0,247); o segundo – questões ambientais – apresentou uma correção alta (r = 0,835), embora houvesse problemas em 3 itens; o terceiro – questões de atitude – foi o que apresentou a correlação mais alta (r = 0,888). Conclusão: O presente estudo conseguiu realizar a primeira etapa da validação do questionário para a língua portuguesa – tradução, adaptação cultural e análise dos resultados preliminares, identificando as questões falhas. Há, contudo, necessidade de estudos posteriores com uma amostra maior para que se possa realizar os testes de validação. A escolaridade é um ponto preocupante; é característica a baixa escolaridade da maior parte dos pacientes , o que torna o questionário autoaplicável pouco prático e de difícil aplicação. / Introduction: although there are several instruments to measure quality of life in cancer patients, there is a need for a specific one for those who underwent laryngectomy due to laryngeal cancer. Its features are unrivaled and general instruments do not lend themselves to capture the peculiarities of the impact of their treatment on communication, especially after total laryngectomy. Objective: cross-culturally adapt the Self Evaluation of Communication Experiences after Laryngectomy to the Brazilian Portuguese. Methods: 166 patients who underwent total laryngectomy in a university hospital in southern Brazil between January 2000 and November 2013. Of these, 53 were sought and 39 were found and agreed to answer the questionnaire that was translated from English into Portuguese by a professional health care and an English teacher; retranslated into English by a professional healthcare and a professor of Portuguese (who have English as his native language); approved by the researcher who developed the original questionnaire; and then applied to the patients. The analysis of the questionnaires took place in two stages: first, a qualitative analysis of the understanding that patients had of the questions, the applicability of the instrument and its general conditions; the second, a statistical analysis of responses in order to assess its reliability. Results: Patients who answered the survey have an average age of 65.41 years (43-83 years), predominantly male (82.1%). The tracheosofagial speech, common among laryngectomy patients in other countries, is not used by any patient in this study. On the other hand, it is relevant number of patients who did not develop any type of communication after the oral surgery (48.7%). Other media were quoted speech and esophageal speech eletrolaríngea (both 25.6%). Through the weighting factor, we found a tendency to have a lower quality of life among patients who do not speak (r = 0.241). On formal education, 64.1% of patients have primary education or less; 7.7% of high school; 17.9% completed high school; 2.6% technical course; and 7.7% higher education. The first block of the questionnaire - General questions - proved less suitable (r = 0.247); the second - environmental issues - presented a high correction (r = 0.835), although there were problems in 3 items; the third - questions of attitude - showed the highest correlation (r = 0.888). Conclusion: This study has achieved the first step of the validation of the questionnaire into Portuguese - translation, cultural adaptation and preliminary analysis of the results, identifying failures questions. However, there is need for further studies with a larger sample so that it can perform the validation tests. Schooling is a worrying point; feature is the low education of most of the patients, which makes the self-administered questionnaire impractical and difficult to apply.