Instrumentos de mensuração relacionados ao conhecimento, adesão, atitude e autoeficácia em doença falciforme: revisão integrativa / Instrumentos de medición relacionados al conocimiento, adhesión, actitud y autoeficacia en anemia falciforme: revisión integrativa / Measurement instruments regarding knowledge, adherence, attitude and self-efficacy in sickle cell disease: an integrative review

RESUMO OBJETIVO: identificar, na literatura nacional e internacional, instrumentos de mensuração existentes para medir os domínios conhecimento, autoeficácia, atitude e adesão ao tratamento no contexto da doença falciforme. MÉTODO: revisão integrativa realizada por meio da busca de artigos nos periódicos indexados nas bases de dados: CINAHL, LILACS, PubMed e WOS, de acordo com os critérios de inclusão: artigos originais, que utilizaram instrumentos para medir algum dos domínios pesquisados (conhecimento ou adesão ao tratamento ou autoeficácia ou atitudes da pessoa com doença falciforme, independente da faixa etária da população alvo) dos últimos 15 anos (2003 a 2018). RESULTADOS: foram incluídos 11 artigos dos 379 levantados, com cinco instrumentos identificados. CONCLUSÃO: Os instrumentos identificados poderão fornecer indicadores relacionados aos domínios psicossociais e comportamentais relacionados à doença falciforme.

RESUMEN OBJETIVO: Identificar, en la literatura nacional e internacional, instrumentos de medición existentes para medir los dominios conocimiento, autoeficacia, actitud y adhesión al tratamiento en el contexto de la anemia falciforme. MÉTODO: Revisión integrativa realizada a través de la búsqueda de artículos en los periódicos indexados en las bases de datos: CINAHL, LILACS, PubMed y WOS, de acuerdo con los criterios de inclusión: artículos originales que utilizaron instrumentos para medir alguno de los dominios investigados (conocimiento o adhesión al tratamiento o autoeficacia o actitud de la persona con anemia falciforme, independientemente de la faja etaria de la población objetivo) de los últimos 15 años (2003 a 2018). RESULTADOS: Fueron incluidos 11 artículos de los 379 relevados, habiéndose identificado cinco instrumentos. CONCLUSIÓN: Los instrumentos identificados podrán brindar indicadores relacionados a los dominios psicosociales y conductuales relativos a la anemia falciforme.

ABSTRACT OBJECTIVE: To identify in Brazilian and international literature existing measurement instruments to measure the domains of knowledge, self-efficacy, attitude and treatment adherence in the context of sickle cell disease. METHOD: This was an integrative review conducted by searching articles in journals indexed in the CINAHL, LILACS, PubMed and WoS databases, according to the following inclusion criteria: original articles that used instruments to measure at least one of the studied domains (knowledge or treatment adherence or self-efficacy or attitudes of people with sickle cell disease, regardless of age of population), in the last 15 years (2003 to 2018). RESULTS: Of the 379 articles found, 11 were included, and among these, five instruments were identified. CONCLUSION: The instruments identified in the literature review can provide indicators relative to the psychosocial and behavioral domains of sickle cell disease.

Desenvolvimento e validação do protocolo de autocuidado em doença falciforme (PAUT@-DF) para apoio educacional aos jovens pelo Aplicativo Móvel Globin / Development and validation of the sickle-cell self-care protocol (PAUT @ -DF) for educational support to young people through the Globin Mobile Application

Objetivo: elaborar e validar o protocolo de autocuidado em doença falciforme - PAUT@-DF e implementá-lo no aplicativo móvel Globin. Métodos: estudo observacional, exploratório e descritivo com delineamento de uma pesquisa aplicada, abrangendo quatro etapas. Primeira etapa: abrange dois momentos: 1- Revisão integrativa sobre os aplicativos móveis em doença falciforme. 2- Identificação do conteúdo de autocuidado e preferências das funcionalidades do aplicativo móvel a ser desenvolvido. Segunda etapa: envolveu a construção, validação de conteúdo e adequação cultural do protocolo. Terceira etapa: constou do desenvolvimento do aplicativo Globin no sistema móbile, gestão Web e ilustração. Quarta etapa: avaliações da usabilidade e utilidade. A usabilidade foi avaliada em duas iterações: 1- avaliação heurística e classificação do grau de severidade por especialistas; 2- avaliação da usabilidade pelo público-alvo; a utilidade do aplicativo foi verificada por meio da aplicação de um questionário, via ligação telefônica à população-alvo. Resultados: são apresentados de acordo com cada etapa. Primeira etapa: a revisão foi composta por 12 artigos publicados na literatura internacional. Não foram identificados estudos brasileiros, apesar da alta incidência da doença, o que aponta para a necessidade de desenvolvimento de aplicativos móveis de doença falciforme no país. Quanto ao conteúdo de autocuidado e as funcionalidades do aplicativo, 21 jovens com idade entre 13 e 24, contribuíram para a identificação dos domínios físico, emocional e social do autocuidado que puderam ser relacionados aos recursos tecnológicos do aplicativo a ser desenvolvido. A escolha do nome Globin para o aplicativo foi unânime entre os participantes. Segunda etapa: o protocolo de autocuidado em doença falciforme nomeado como Paut@-DF constou de 6 domínios: 1º- primeiras aproximações (dados pessoais, clínicos e prática de autocuidado); 2º- Blogin (informações peculiares à doença na adolescência;); 3º- acompanhamento diário dos sentimentos (de neutralidade, alegria, tristeza, raiva, preocupação, confusão, rejeição); 4º- acompanhamento diário (dor, cansaço, febre e sono); 5º- outras situações (priapismo, menstruação, internações e outras dificuldades); 6º- plano de ação (hidratação, uso do medicamento hidroxiureia e suplementação de ácido fólico). A variação das médias do IVC de clareza e relevância dos itens avaliado pelos especialistas e jovens ficou entre 0,90 e 1,0. Terceira etapa: a partir dos domínios do Paut@-DF, o Globin foi estruturado nos itens: missões, acompanhamento, histórico, perfil, agenda e jogo. O módulo gestão foi estruturado para receber e processar os dados dos usuários do aplicativo. Quarta etapa: a avaliação heurística do Globin gerou uma média de 53,97 pontos. A classificação do grau de severidade das heurísticas violadas permitiu ajustes nas interfaces. A avaliação da usabilidade foi realizada por oito jovens e a média obtida foi de 90,3 pontos, considerada uma usabilidade excelente. A partir da avaliação da utilidade, emergiram três categorias temáticas: 1) Fonte de conhecimento; 2) Apoio para compreender a necessidade de se cuidar; 3) Aprimoramento da prática de autocuidado. Conclusão: este estudo fornece o protocolo Paut@-DF com conteúdo validado, configurando-se em uma ferramenta de gestão para o apoio à prática de autocuidado dos jovens com doença falciforme. A aquisição de novas informações e o refinamento de conhecimento sobre a doença falciforme a partir do Paut@-DF implementado no aplicativo móvel Globin foram fundamentais para que os jovens passassem a compreender melhor sobre a necessidade de cuidados, bem como aprimorar a prática do autocuidado.

Objective: to elaborate and validate the PAUT@-DF self-care protocol for sickle cell disease and implement it in the Globin mobile application. Methods: observational, exploratory and descriptive study, with an applied research design, including four stages. First stage: includes two moments: 1- Integrative review regarding the mobile applications for sickle cell disease; 2- Content identification on self-care and preferences for the functionalities of the mobile application to be developed. Second stage: encompassed the construction, content validation and cultural adequation of the protocol. Third stage: comprised the development of the Globin application in the mobile system, web management and illustration. Fourth stage: assessment of the usability and utility. The usability was assessed in two iterations: 1- heuristic evaluation and ranking of the severity grade by specialists; 2- evaluation of the usability by the target public; The utility of the application was checked by means of a questionnaire, made by phone call to the target-public. Results: are presented regarding each stage. First Stage: the review was comprised by 12 articles published in the international literature. There were no Brazilian studies identified, despite the high occurrence of the disease, which points towards the need to develop mobile applications for the sickle cell disease. Regarding the self-care content and the application's functionality, 21 youngsters with age ranging from 13 to 24, contributed for the identification of the physical, emotional and social domains of self-care that were than related to the technological resources of the application being developed. The choice of the name Globin for the application was unanimous among the participants. Second stage: the protocol for self-care of the sickle cell disease named as Paut@-DF was comprised of 6 domains: 1st- first approaches (personal, clinical and self-care data); 2nd- Blogin (information particular to the disease during teenage years); 3rd- daily follow-up of the feelings (of neutrality, joy, sadness, anger, worry, confusion, rejection); 4th- daily follow-up (pain, exhaustion, fever and sleep); 5th- other situations (priapism, menstruation, hospitalizations and other difficulties); 6th- action plan (hidration, use of hydroxyurea and folic acid supplement medication). Variation of the IVC clarity and relevance means of the items assessed by the specialists and youngsters was between 0,9 and 1,0. Third stage: from the Paut@-DF, the Globin was structured in the following items: missions, follow-up, history, profile, schedule and game. The management module was structured to receive and process the user data from the application. Fourth stage: the heuristic evaluation of the Globin generated an average of 53,97 points. The ranking of the severity grade of the violated heuristics allowed interface adjustments. The usability assessment was made by eight youngsters and the mean obtained was of 90,3 points, which is considered an excellent usability. From the utility evaluation, three thematic categories emerged: 1) Knowledge source; 2) Support to comprehend the need to take care of oneself; 3) Improvement of the self-care habit. Conclusion: this study provides the Paut@-DF protocol with validated content, making it a management tool for the support to self-care practice by youngsters with sickle cell disease. The acquisition of new information and the refinement of knowledge about the sickle cell disease from the Paut@-DF implemented in the Globin mobile application were key so the youngsters could better comprehend the need of care, as well as improve the practice of self-care.

Barriers experienced in self-care practice by young people with sickle cell disease

ABSTRACT Objective: To identify barriers to the self-care practice of young people with sickle cell disease. Method: This qualitative study was conducted with 17 individuals with sickle cell disease aged between 13 and 24 years in Belo Horizonte, MG, Brazil in March and April 2017. An interview investigated the barriers to self-care practice and the feelings associated with sickle cell disease. Data were transcribed and analyzed according to Bardin's perspective using the following steps: (1) pre-analysis, (2) exploration of the material, and (3) treatment of the results (inference and interpretation). Results: Five thematic categories emerged: (1) feelings: anger, sadness, and fear; (2) bullying and stigmatization: challenges regarding walking, speaking, or behaving, as well as patient labels; (3) cognitive factors: doubts related to medication, hydration, heredity and maternity; (4) medication compliance: fear of the side effects suffered and anger triggered by the obligation to use the medication; (5) family issues: complaints of not earning the mothers' trust to live independently. Conclusion: The barriers to self-care in young people with sickle cell disease indicate difficulties related to emotional, behavioral, and environmental aspects. Understanding these factors will favor a better adaptation of youths to the context of sickle cell disease.

Barriers experienced in self-care practice by young people with sickle cell disease.

OBJECTIVE: To identify barriers to the self-care practice of young people with sickle cell disease. METHOD: This qualitative study was conducted with 17 individuals with sickle cell disease aged between 13 and 24 years in Belo Horizonte, MG, Brazil in March and April 2017. An interview investigated the barriers to self-care practice and the feelings associated with sickle cell disease. Data were transcribed and analyzed according to Bardin's perspective using the following steps: (1) pre-analysis, (2) exploration of the material, and (3) treatment of the results (inference and interpretation). RESULTS: Five thematic categories emerged: (1) feelings: anger, sadness, and fear; (2) bullying and stigmatization: challenges regarding walking, speaking, or behaving, as well as patient labels; (3) cognitive factors: doubts related to medication, hydration, heredity and maternity; (4) medication compliance: fear of the side effects suffered and anger triggered by the obligation to use the medication; (5) family issues: complaints of not earning the mothers' trust to live independently. CONCLUSION: The barriers to self-care in young people with sickle cell disease indicate difficulties related to emotional, behavioral, and environmental aspects. Understanding these factors will favor a better adaptation of youths to the context of sickle cell disease.

Aplicativos móveis para o manejo da doença falciforme: revisão integrativa / Aplicaciones móviles para el tratamiento de la drepanocitosis: una revisión integrativa / Mobile applications for sickle cell disease management: an integrative review

Resumo Objetivo Investigar, na literatura nacional e internacional, os aplicativos móveis existentes desenvolvidos para gerenciamento da doença falciforme. Métodos Estudo de revisão integrativa, conduzido nas bases de dados Medline/via PubMed, BVS, Current Index to Nursing and Allied Health Literature (Cinahl), Web of Science e Scopus, no período de setembro de 2016 a março de 2018. Os artigos selecionados foram analisados de acordo com a Agency for Healthcare Research and Quality (AHQR). Resultados Integraram esta revisão 12 artigos, sendo dois da Web of Science e o restante da PubMed. Conclusão Esta revisão mostrou a incipiência de estudos que contemplam o desenvolvimento de aplicativos móveis no contexto da doença falciforme. No Brasil não foram identificados estudos que utilizem aplicativos móveis direcionados à população com doença falciforme, apesar da alta incidência desta condição crônica. Este estudo aponta para a necessidade de desenvolvimento de aplicativos móveis como importante recurso educativo que possa apoiar a prática de autocuidado das pessoas com doença falciforme.

Resumen Objetivo Estudio informativo sobre revisión de la literatura de artículos acerca de aplicaciones móviles disponibles para tratamiento de la anemia drepanocítica publicados en Brasil y el extranjero. Métodos Búsquedas realizadas en bases: Library of Medicine (Medline/vía PubMed), Current Index to Nursing and Allied Health Literature (Cinahl), Web of Science y Scopus para el período desde septiembre de 2006 hasta marzo de 2018. Niveles de evidencia de artículos seleccionados basados en categorías de la Agency for Healthcare Research and Quality (AHRQ) para calificar la solidez de la evidencia. Resultados Doce artículos fueron incluidos en esta revisión, dos de ellos obtenidos por consulta en Web of Science y los diez restantes en Pubmed. Conclusión La revisión mostró la naturaleza emergente de la investigación sobre el desarrollo de aplicaciones móviles dirigidas a las personas con drepanocitosis. En el caso de Brasil, no se encontraron estudios sobre aplicaciones para la drepanocitosis, a pesar de la alta incidencia del trastorno en el país. Esta revisión señala la necesidad de desarrollar aplicaciones móviles como recursos educativos para apoyar las prácticas de autocuidado de las personas con drepanocitosis.

Abstract Objective This paper reports on a literature review of articles on mobile applications available for the management of sickle cell disease published in Brazil and abroad. Methods Searches were carried out in the Library of Medicine (Medline/via PubMed), Current Index to Nursing and Allied Health Literature (Cinahl), Web of Science and Scopus databases covering a period spanning September/2016 to March/2018. Levels of evidence of the selected articles were based on the categories of the Agency for Healthcare Research and Quality (AHRQ) for grading strength of evidence. Results A total of twelve articles were included in this review, two of them yielded by a query in Web of Science and the remaining ten in Pubmed. Conclusion The review showed the emergent nature of research on the development of mobile applications aimed at people with sickle cell disease. In the case of Brazil, no studies targeting sickle cell disease applications were found, despite the high incidence of this disorder in the country. This review points to the need for mobile applications to be developed as educational resources in supporting the self-care practices of people with sickle cell disease.

Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders.

OBJECTIVE: Sickle cell disease comprises chronic, genetically determined disorders, presenting significant morbidity and high prevalence in Brazil. The goal of this study was to evaluate the quality of life of sickle cell disease patients (hemoglobin SS and SC) and their sociodemographic and clinical characteristics. METHODS: Data was collected from clinical records and semi-structured interviews consisting of clinical questionnaires and the World Health Organization Quality of Life-brief questionnaire. RESULTS: Interviews were conducted with 400 patients, aged between 18 and 72, treated in the Fundação HEMOMINAS in Belo Horizonte. The participants predominantly had sickle cell disease hemoglobin SS variant (65.5%), were female (61.8%), single (55.3), with up to 8 years of schooling (49.6%), and self-defined as mulattos (50%). Pain crises, hospitalizations, blood transfusions, and other morbidities of sickle cell disease had a significant impact on the quality of life of these patients. CONCLUSION: Within this group, the social profile was that of low income and unemployed with sickle cell disease considered to be a significant impediment to finding a job. Evaluating quality of life as a determining factor of health is essential for the creation of specific policies and measures, appropriate for the specific characteristics and social context of sickle cell disease.

Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders

OBJECTIVE Sickle cell disease comprises chronic, genetically determined disorders, presenting significant morbidity and high prevalence in Brazil. The goal of this study was to evaluate the quality of life of sickle cell disease patients (hemoglobin SS and SC) and their sociodemographic and clinical characteristics. METHODS Data was collected from clinical records and semi-structured interviews consisting of clinical questionnaires and the World Health Organization Quality of Life-brief questionnaire. RESULTS Interviews were conducted with 400 patients, aged between 18 and 72, treated in the Fundação HEMOMINAS in Belo Horizonte. The participants predominantly had sickle cell disease hemoglobin SS variant (65.5%), were female (61.8%), single (55.3), with up to 8 years of schooling (49.6%), and self-defined as mulattos (50%). Pain crises, hospitalizations, blood transfusions, and other morbidities of sickle cell disease had a significant impact on the quality of life of these patients. CONCLUSION Within this group, the social profile was that of low income and unemployed with sickle cell disease considered to be a significant impediment to finding a job. Evaluating quality of life as a determining factor of health is essential for the creation of specific policies and measures, appropriate for the specific characteristics and social context of sickle cell disease.