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.

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.