Cancer survivorship needs in Brazil: Patient and family perspective.

INTRODUCTION: Cancer Survivorship is a growing public health challenge. Effective responses from health care and social services depend on appropriate identification of survivors and their families´ specific needs. There are few studies on survivorship in low and middle-income countries, therefore, more evidence-based studies are necessary to develop a comprehensive approach to cancer survivorship. OBJECTIVES: Identify the needs of cancer survivors and their relatives, specifically those of individuals with breast, cervical or prostate cancer, and with acute lymphocytic leukemia (ALL). METHODS: A qualitative, exploratory study conducted in two referral institutions in Brazil, located in Rio de Janeiro (Southeast region) and Fortaleza (Northeast region). The study included 47 patients of public and private health services and 12 family members. We used script-based semi-structured interviews. The discursive material obtained was categorized and analyzed using the Thematic Analysis approach. RESULTS: The analysis identified three central themes: 1) consequences of cancer treatment; 2) Changes in daily life associated with cancer survivorship; and 3) Unmet structural needs in cancer survivorship. CONCLUSION: Social and cancer control policies in Brazil should provide resources, specific care standards and clinical, psychological and social support. Cancer survivors should also receive rehabilitation and work reintegration guidelines. This matter requires broader access to qualified cancer information, development of an integrated patient-centered care and care model, and more research resources for the country's post-treatment cancer period.

Procrastination in the early detection of breast cancer.

OBJECTIVE: to analyze the meaning of postponement of breast cancer detection based on interviews with 26 women who were submited to mastectomy. METHOD: qualitative study based on Symbolic Interactionism with Content Analysis in thematic modality, carried out in a public service outpatient clinic, in a capital city of Northeastern Brazil. RESULTS: faced with the participants' reports, the theme 'meanings attributed to procrastination of breast health care' emerged. The meaning given by women to the reasons for postponing breast care permeate the interfaces between personal reasons and difficulties found in the healthcare network. FINAL CONSIDERATIONS: early detection is considered to be delayed for fear of diagnosis, personal, cultural barriers, and difficulties in health services.

Coping with problems that impact on the health of a socially vulnerable community from the residents' perspective. / Enfrentamento de problemas que impactam na saúde de uma comunidade socialmente vulnerável sob a ótica dos moradores.

This research aims to identify the strategies adopted by dwellers of a socially vulnerable community, characterized by social and economic inequality, to address the problems that interfere in the health conditions. A participant investigation anchored in hermeneutics was conducted through participatory diagnosis, with 31 residents of the Dendê community, who were called vital informants. Data were collected from semi-structured interviews, street walking and focus groups. WebQDA software was adopted to support data analysis, based on content analysis in the thematic modality, which resulted in the following categories: "individual or small group actions", "partnerships between residents and social organizations" and "partnerships with public and private sectors". We considered that the condition of vulnerability motivated by a diversity of social determinants generates negative impacts on health, requiring planning and implementation of policies and actions geared to people's well-being. This reflects the relevance of the participatory diagnosis, which can be supported by people and Information and Communication Technologies to increase community participation in health promotion actions.

Esta pesquisa objetiva identificar as estratégias adotadas por moradores de uma comunidade socialmente vulnerável, caracterizada pela desigualdade econômica e social, para o enfrentamento dos problemas que interferem nas condições de saúde. Realizou-se pesquisa participante por meio do diagnóstico participativo, ancorada na Hermenêutica. Participaram 31 moradores da Comunidade do Dendê, denominados informantes-chave. Coletaram-se os dados a partir de entrevista semiestruturada, caminhada de rua e grupos focais. Utilizou-se o software WebQDA para amparar a análise dos dados, com base na Análise de Conteúdo na modalidade temática, identificando-se as seguintes categorias: "ações individuais ou de pequenos grupos de pessoas", "parcerias entre moradores e organizações sociais" e "parcerias com segmentos públicos e privados". Considera-se que a condição de vulnerabilidade, motivada por uma diversidade de determinantes sociais, gera impactos negativos sobre a saúde, tornando necessário o planejamento e a efetivação de políticas e ações voltadas ao bem estar da população. Isso reflete a relevância do diagnóstico participativo, o qual pode ser apoiado pelas pessoas e Tecnologias da Informação e Comunicação para ampliar a participação comunitária nas ações promotoras de saúde.

Enfrentamento de problemas que impactam na saúde de uma comunidade socialmente vulnerável sob a ótica dos moradores / Coping with problems that impact on the health of a socially vulnerable community from the residents' perspective

Resumo Esta pesquisa objetiva identificar as estratégias adotadas por moradores de uma comunidade socialmente vulnerável, caracterizada pela desigualdade econômica e social, para o enfrentamento dos problemas que interferem nas condições de saúde. Realizou-se pesquisa participante por meio do diagnóstico participativo, ancorada na Hermenêutica. Participaram 31 moradores da Comunidade do Dendê, denominados informantes-chave. Coletaram-se os dados a partir de entrevista semiestruturada, caminhada de rua e grupos focais. Utilizou-se o software WebQDA para amparar a análise dos dados, com base na Análise de Conteúdo na modalidade temática, identificando-se as seguintes categorias: "ações individuais ou de pequenos grupos de pessoas", "parcerias entre moradores e organizações sociais" e "parcerias com segmentos públicos e privados". Considera-se que a condição de vulnerabilidade, motivada por uma diversidade de determinantes sociais, gera impactos negativos sobre a saúde, tornando necessário o planejamento e a efetivação de políticas e ações voltadas ao bem estar da população. Isso reflete a relevância do diagnóstico participativo, o qual pode ser apoiado pelas pessoas e Tecnologias da Informação e Comunicação para ampliar a participação comunitária nas ações promotoras de saúde.

Abstract This research aims to identify the strategies adopted by dwellers of a socially vulnerable community, characterized by social and economic inequality, to address the problems that interfere in the health conditions. A participant investigation anchored in hermeneutics was conducted through participatory diagnosis, with 31 residents of the Dendê community, who were called vital informants. Data were collected from semi-structured interviews, street walking and focus groups. WebQDA software was adopted to support data analysis, based on content analysis in the thematic modality, which resulted in the following categories: "individual or small group actions", "partnerships between residents and social organizations" and "partnerships with public and private sectors". We considered that the condition of vulnerability motivated by a diversity of social determinants generates negative impacts on health, requiring planning and implementation of policies and actions geared to people's well-being. This reflects the relevance of the participatory diagnosis, which can be supported by people and Information and Communication Technologies to increase community participation in health promotion actions.

Procrastination in the early detection of breast cancer / Procrastinación en la detección precoce del cáncer de mama / Procrastinação na detecção precoce do câncer de mama

ABSTRACT Objective: to analyze the meaning of postponement of breast cancer detection based on interviews with 26 women who were submited to mastectomy. Method: qualitative study based on Symbolic Interactionism with Content Analysis in thematic modality, carried out in a public service outpatient clinic, in a capital city of Northeastern Brazil. Results: faced with the participants' reports, the theme 'meanings attributed to procrastination of breast health care' emerged. The meaning given by women to the reasons for postponing breast care permeate the interfaces between personal reasons and difficulties found in the healthcare network. Final considerations: early detection is considered to be delayed for fear of diagnosis, personal, cultural barriers, and difficulties in health services.

RESUMEN Objetivo: analizar el sentido del aplazamiento de la detección del cáncer de mama a partir de entrevistas con 26 mujeres que fueron sometidas a la mastectomía. Método: estudio cualitativo fundamentado en el Interaccionismo Simbólico, con Análisis de Contenido en la modalidad temática, realizado en ambulatorio de servicio público, en una capital del nordeste brasileño. Resultados: Ante los relatos de las participantes, emergió la temática 'sentidos atribuidos a la procrastinación del cuidado de la salud mamaria'. El significado dado por las mujeres a los motivos del aplazamiento del cuidado con la mama atraviesan las interfaces entre razones personales y dificultades encontradas en la red de salud. Consideraciones finales: la detección precoz es retardada por miedo al diagnóstico, barreras personales, culturales y dificultades en los servicios de atención a la salud.

RESUMO Objetivo: analisar o sentido do adiamento da detecção do câncer de mama, a partir de entrevistas com 26 mulheres que foram submetidas à mastectomia. Método: estudo qualitativo e fundamentado no interacionismo simbólico, com Análise de Conteúdo na modalidade temática, realizado em ambulatório de serviço público, numa capital do Nordeste brasileiro. Resultados: ante os relatos das participantes, emergiu a temática 'sentidos atribuídos à procrastinação do cuidado da saúde mamária'. O significado dado pelas mulheres, aos motivos do adiamento do cuidado com a mama, perpassa pelas interfaces entre razões pessoais e dificuldades encontradas na Rede de Atenção à Saúde. Considerações finais: considera-se que a detecção precoce é retardada por medo do diagnóstico, barreiras pessoais, culturais e dificuldades nos serviços de saúde.

Mastectomy and the Meaning Attributed by Patients to Delay in Early Diagnosis of Breast Cancer

Background: Breast cancer is a major public health problem and its early detection (ED) can reduce the number of breast mutilations, morbidity and mortality rates, health costs and negative health outcomes. Given that, this study aimed to assess the meaning attributed by mastectomized women to delay in early detection of their breast cancers. Methods: Qualitative research was conducted with 26 mastectomized women who participated in semi-structured interviews about the meaning of delay in early detection of breast cancer in a reference oncology outpatient clinic in the city of Fortaleza, Ceará, Northeastern Brazil from December 2015 to January 2016. Information was analyzed on the basis of symbolic interactionism. Results: After noticing breast changes, women start to ponder about them and experience this moment according to interpretive particularities. Fear of disease, multiple roles in modern society, denial of breast changes, lack of information on the issue, and lack of professionals to encourage their involvement in health care, favor delay in the search for care and therefore in the early detection of breast cancer, which is a determinant of therapeutic success. Conclusion: Women receive limited information and professional support for breast health. Delay in early diagnosis occurred in all the women who participated in the study.

Participating in a support group: experience lived by women with breast cancer.

The goal of the study was to understand the meaning of support groups in the life of women with breast cancer. It is a qualitative study with 30 mastectomized women who belonged to six support groups in the city of Fortaleza, Ceará. Data were collected with semi-structured interviews, organized and analyzed based on the interactionism concept. The results characterized the support groups as a mechanism to cope with the situation and to overcome the suffering derived from the diagnosis and treatment of the breast carcinoma. The socialization of the experiences facilitated the search for assistance in the support groups, since sharing the problems with mastectomized women was a way to preserve a high self-esteem, have faith and overcome some difficulties. Participating in the group provided well-being and a differentiated care, since it was considered a way to know, accept and understand the disease and its cure, facilitating the socialization of ideas.

Participating in a support group: experience lived by women with breast cancer / Participación en un grupo de apoyo: experiencia de mujeres con cáncer de mama / Participação em grupo de apoio: experiência de mulheres com câncer de mama

The goal of the study was to understand the meaning of support groups in the life of women with breast cancer. It is a qualitative study with 30 mastectomized women who belonged to six support groups in the city of Fortaleza, Ceará. Data were collected with semi-structured interviews, organized and analyzed based on the interactionism concept. The results characterized the support groups as a mechanism to cope with the situation and to overcome the suffering derived from the diagnosis and treatment of the breast carcinoma. The socialization of the experiences facilitated the search for assistance in the support groups, since sharing the problems with mastectomized women was a way to preserve a high self-esteem, have faith and overcome some difficulties. Participating in the group provided well-being and a differentiated care, since it was considered a way to know, accept and understand the disease and its cure, facilitating the socialization of ideas.

En este estudio, se buscó comprender el significado de los grupos de apoyo a las mujeres con cáncer de mama. Se trata de estudio cualitativo con 30 mujeres mastectomizadas pertenecientes a seis grupos de apoyo de la ciudad de Fortaleza-Ceará. Los datos recolectados por medio de entrevista semi-estructurada fueron organizados y analizados bajo el marco teórico interaccionista. Los resultados caracterizaron los grupos como un mecanismo para el enfrentamiento de la situación y de superación del sufrimiento que se originan en el diagnóstico y tratamiento del carcinoma mamario. La socialización de las experiencias facilitó la búsqueda de auxilio en los grupos de apoyo, ya que compartir problemas entre las mujeres mastectomizadas, era una forma de mantener la auto-estima elevada, de creer, de confiar y superar algunas dificultades. La participación en el grupo proporcionaba bienestar y un cuidado diferenciado, ya que fue considerada una forma de conocer, aceptar y comprender la enfermedad y su cura, facilitando la socialización de las ideas.

Procurou-se compreender o significado sobre os grupos de apoio na vida das mulheres com câncer de mama. Trata-se de estudo qualitativo com 30 mulheres mastectomizadas, pertencentes a seis grupos de apoio da cidade de Fortaleza, Ceará. Os dados coletados por meio de entrevista semi-estruturada foram organizados e analisados sob fundamentação interacionista. Os resultados caracterizaram os grupos como mecanismo para o enfrentamento da situação e de superação do sofrimento, oriundo do diagnóstico e tratamento do carcinoma mamário. A socialização das experiências facilitou a busca de auxílio nos grupos de apoio, pois compartilhar problemas entre as mulheres mastectomizadas era uma forma de manter a auto-estima elevada, de acreditar, de confiar e superar algumas dificuldades. A participação no grupo proporcionava bem-estar e cuidado diferenciado, pois foi considerada uma forma de conhecer, aceitar e compreender a doença e cura, facilitando a socialização das idéias.