Abstract
ABSTRACT The aim of this study was to elaborate a booklet for health follow-up and guidance on sickle cell disease for relatives of children with this disease and validate it. It is a methodological study, conducted from May 2017 to February 2018, of the elaboration and validation of an educational technology, constructed from previous field research in a pediatric hospital in Ceará (ethical opinion nº 994.879 and nº 955.727). Validation of content and appearance occurred by specialized, technical and communication judges; after the adjustments, the evaluation by representatives of the target public took place. The analysis was through the Concordance Index. Results: the evaluation of technical judges and experts reached a Global Concordance Index of 0.93, characterizing the book as good quality. The judges of communication evaluated all items as Superior. As for family members, everyone agreed that the book was adequate. It is concluded that the booklet has been duly drawn up and validated as regards its content and its appearance. Implications for practice: this educational technology is an important instrument to be used by health professionals, aiming to contribute to increase the knowledge of the relatives of children with sickle cell disease.
Highlights
Sickle diseases are a serious public health problem, affecting millions of people around the world, with high mortality and morbidity rates
Together with the findings found in the situational diagnostic phase, the contents were selected, being prepared in a way that there were groupings of subjects that were related, seeking to facilitate the readers' understanding of the subject, in order to be created chapters for the presentation of printed educational technology
The topics selected from the demands of the relatives of children with sickle cell disease, together with the findings found in the literature review were: information on human blood, definition of sickle cell disease and sickle cell trait, genetic inheritance in sickle cell disease, signs and symptoms, major complications and necessary care, health diagnosis and follow-up, treatment, bone marrow transplantation, with food, health rights and how to deal with the disease in the child's life
Summary
Sickle diseases are a serious public health problem, affecting millions of people around the world, with high mortality and morbidity rates. The combinations of a mutant Hb with another of type S constitute sickle diseases, such as: sickle cell anemia (Hb SS), S beta thalassemia and the double heterozygous HbSC and HbSD, the most severe being HbSS and Hb S beta thalassemia.[3] Because of this mutation, red blood cells undergo a process of change in their morphological conformation, assuming the shape of a scythe, which affects the adequate blood flow through the vessels. In this way, vasoconstriction occurs, venous stasis and reduction of oxygen supply to the tissues in several organs, which promotes its progressive lesion and painful crises.[4]. As for the child, from the six months of life onwards it is possible to start some diseases, such as: chronic anemia, severe infectious processes, pain crises, as well as complications such as stroke, between others that can compromise multiple organs.[5,6] In this way, continuous health care is needed from a very early age
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