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

Abstract

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.

Ser adolescente apesar das restrições e da discriminação impostas pela doença falciforme

“…(15) Citaram, como exemplo, afastar-se das atividades escolares, do convívio com amigos e colegas. (18) Estudos relatam que os adolescentes com DF necessitam frequentar regulamente os serviços de saúde, (15,19) são submetidos a internações hospitalares, uso contínuo de medicamentos, além da realização de procedimentos diagnósticos e terapêuticos à medida que a doença progride. (17) As hospitalizações frequentes, em decorrência das doenças crônicas, interferem nos laços afetivos e, por vezes, causam rupturas nos relacionamentos, devido aos longos períodos de afastamento.…”