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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