ObjectiveSickle 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. MethodsData was collected from clinical records and semi-structured interviews consisting of clinical questionnaires and the World Health Organization Quality of Life-brief questionnaire. ResultsInterviews 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. ConclusionWithin 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.
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.
ObjectiveTo identify barriers to the self-care practice of young people with sickle cell disease.MethodThis 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).ResultsFive 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.ConclusionThe 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.
Objetivo: identificar, na literatura nacional e internacional, instrumentos de mensuração existentespara medir os domínios conhecimento, autoeficácia, atitude e adesão ao tratamento no contextoda doença falciforme.Método: revisão integrativa realizada por meio da busca de artigos nos periódicos indexados nasbases de dados: CINAHL, LILACS, PubMed e WOS, de acordo com os critérios de inclusão: artigosoriginais, que utilizaram instrumentos para medir algum dos domínios pesquisados (conhecimento ouadesão ao tratamento ou autoeficácia ou atitudes da pessoa com doença falciforme, independenteda 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 domíniospsicossociais e comportamentais relacionados à doença falciforme.
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