Therapy preference and decision‐making among patients with severe sickle cell anemia and their families&

Abstract

Patients with severe SCA and their parents can identify their treatment preferences. Improved understanding of their preferences and decision-making process will aid in the design of future clinical trials and in medical decision-making.

How I use hydroxyurea to treat young patients with sickle cell anemia

“…With interest in hydroxyurea increasing, patients should be empowered to make informed choices about its use; most will probably choose hydroxyurea over other treatment choices. 86 Decision-making research is needed to clarify the risks and benefits of treatment for children who have different degrees of clinical severity.…”

Children as decision-makers in health care - An integrative review

“…Making a decision together or discussing their decision with parents was significant for children's self-esteem and their adherence to treatment. [31,[40][41][42] The positive attitude of parents and healthcare personnel had an effect on the child's participation. [31,42] The decisionmaking related to treatment did not have a big importance for the children when their physical condition was bad or their treatment was just beginning.…”

“…[11,22,23,26,35] Children are able to provide a very different point of view to the planning of treatment. [11] Children and minors should be given a chance to share the decision-making with their parents or healthcare personnel [22,34,40] or they should be provided an opportunity to have someone else make decisions for them. [22,26,34,41] The decision-making process depends on how the family in general makes decisions between them.…”

“…The results of the study and its effects were significant for both the patients and parents. [40] In the study by Hankins, et al, the patients and parents were given written material. [40] In the follow-up studies, it should…”

A família da criança com doença falciforme e a equipe enfermagem: revisão crítica

“…De acordo com a literatura pesquisada, especificamente no que tange à temática conhecimento científico, o enfermeiro deve conhecer a doença falciforme e suas consequências físicas, sociais e psicoló-gicas para a criança e sua família, o impacto causado na vida familiar, assim como seu papel como transformador político e social, atuando junto às associações de pacientes e a políticas públicas de saúde. [11][12][13][14][15][16] Nos programas do Ministério da Saúde relacionados às hemoglobinopatias, muito se tem falado em orientação genética, 3 mas como e quando o profissional enfermeiro está sendo preparado? Está adquirindo conhecimento técnico, científico, ético, para atuar em área tão nova para a enfermagem brasileira?…”