Creation and validation of a health guidance booklet for family members of children with sickle cell disease

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.

The psychological impact on family caregivers of children and adolescents with sickle cell anemia

“…In this sense, both the child and the adolescent affected by the disease, as well as their family caregivers, are faced with a situation marked by a chronic stress linked to the disease, which extends throughout the treatment and permeates their daily lives (Figueiró & Ribeiro, 2017;Gomes et al, 2019;Jesus, Konstantyner, Lobo, & Braga, 2018;Rodrigues, Araújo, & Melo, 2010;Santos, Damião, Fonseca, Rodrigues, & Aguiar, 2019); being indicated that intervention proposals are directed both to the child (Campelo et al, 2018;Oliveira, Enumo, & Paula, 2017) and to the family (Caprini, 2019;Figueiredo, Moreira, Mota, Oliveira, & Gomes, 2019).…”

Educational technology for people with chronic renal disease: construction and validation of content / Tecnologia educacional para pessoas com doença renal crônica: construção e validação de conteúdo

“…The clearest and most easily understood language facilitates the understanding of the guidelines that are provided and enhances decisionmaking and the self-care process. 19 The evaluators requested that the information be directed to the public with CKD, undergoing hemodialysis, because they understand that the needs about the disease are much broader than the diet and the transplantation process, which would make the booklet with a lot of information and exhaustive for the reader. A booklet validation study on the management of health actions to prevent child diarrhea pointed out that the requested changes, restricting to the pediatric-infantile population and according to the instructional level of the child and those responsible, were relevant because the self-care practices were different.…”

Effect of reading an educational booklet about sickle cell disease on family members' knowledge

“…Para contribuir para a mudança dessa realidade com o uso de ferramentas que facilitem a compreensão de familiares sobre a doença falciforme e cuidados necessários à prevenção de suas crises, uma caderneta sobre o tema foi elaborada e validada em 2018, no formato impresso e digital, como suporte a familiares. A referida tecnologia é a única existente para educação em saúde de familiares de crianças com doença falciforme em língua portuguesa e passou por rigoroso processo de criação e validação de conteúdo e aparência por juízes especialistas e público--alvo (7) , sendo escolhida para o desenvolvimento da presente pesquisa. Com base nessas considerações, objetivou-se analisar o efeito da leitura de uma caderneta educativa sobre a doença falciforme relacionada com o conhecimento de familiares.…”