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

Figueiredo, Sarah Vieira; Moreira, Thereza Maria Magalhães; Mota, Clarice Santos; Oliveira, Roselene Soares de; Gomes, Ilvana Lima Verde

doi:10.1590/2177-9465-EAN-2018-0231

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RESEARCH • Esc. Anna Nery 23 (1) • 2019 • https://doi.org/10.1590/2177-9465-EAN-2018-0231 copy

Creation and validation of a health guidance booklet for family members of children with sickle cell disease^a a Research extracted from the Thesis “Creation and validation of a health guidance booklet for family members of children with sickle cell disease”, defended in 2018 in the Postgraduation Program in Collective Health of the State University of Ceará (UECE).

Elaboración y validación de libreta de orientación en salud para familiares de niños con enfermedad falciforme

Authorship SCIMAGO INSTITUTIONS RANKINGS

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.

Keywords:
Anemia, Sickle Cell; Educational Technology; Child; Family

Items	CI
	N	Score
Objectives
1.1 Are consistent with the guidance needs of people with sickle cell disease and their family members	17	1
1.2 Promotes behavior change and attitude	17	1
1.3 It may circulate in the scientific field in the area of sickle cell disease	14	0.82
Structure and Presentation
2.1 The Handbook is appropriate for people with sickle cell disease and their family members	17	1
2.2 The messages are presented in a clear and objective way	16	0.94
2.3 The information presented is scientifically correct	14	0.82
2.4 The material is appropriate to the socio-cultural level of the proposed target audience	14	0.82
2.5 There is a logical sequence of proposed content	16	0.94
2.6 The information is well structured in agreement and spelling	14	0.82
2.7 Cover, back cover, summary and presentation information are consistent	15	0.88
2.8 The illustrations are expressive and enough	17	1
Relevance
3.1 Topics cover key aspects that need to be strengthened	17	1
3.2 The material proposes to the reader to acquire knowledge about sickle cell disease	17	1
3.3 The material addresses subjects necessary for the prevention of complications in sickle cell disease and guidelines for appropriate decision-making in the face of crises	15	0.88
3.4 It is suitable for use by any professional or health worker in their educational activities	15	0.88
3.5 The material contains the necessary aspects to records of health care provided to a person with sickle cell disease	16	0.94
3.6 The material provides support to facilitate communication between health services about the care provided to these people with sickle cell disease	17	1
Global Booklet Concordance Index	268	0.93

Chapters of the Booklet	Suggestions from technical judges and experts
General Suggestions	- Revision of Portuguese and grammatical; Review paragraph formatting;
	- Add chapter with guidelines on the school;
And what, after all, is sickle cell disease?	- Keep only the term hereditary or genetic in the phrase “it is a genetic and hereditary disease”, because they are synonymous;
	- Replace “erythrocytes other than normal” by a text that includes the types of hemoglobin present, so as not to stigmatize the phrase;
	- Include in the texts hemoglobin A and S or another mutant, to facilitate explanation, especially in the context of sickle cell trait;
	- Include the situations that lead the red blood cells to take the form of sickle;
How Can One Get Sickle Cell Disease	- Replace “from parents to children” with “an illness that children inherit from their parents” because the first version is criticized by people with sickle cell disease;
	- Redo image.
	- Change the title of the chapter by “How can one be born with sickle cell disease”;
	- Improve the description of the sickle cell trait. Include explanation about mutant genes.
	- Remove the word “carrier” from the subtitles.
What complications can happen?	- Improve the image of the girl with symptoms of stroke. Include text that talks about the importance of transcranial Doppler in preventing stroke. Replace the word “infarction” with a clearer one with brain injury;
What complications can happen?	- Improve the text that talks about complications in the spleen, to facilitate the understanding. Include an image that explains the correct way to palpate this organ. Replace the word “worse” with “more serious”.
How is the treatment?	- Add the effects of hydroxyurea;
How is the treatment?	- Include transcranial Doppler examination;
Caring for food	- Improve the text, with the help of nutritionists working on sickle cell disease;
Caring for food	- Reorganize text related to iron and vitamin C, to facilitate understanding;
Child Health Records	- Reformulate table with exams;
	- Add observations from the school;
	- Include registration chart for Iron chelation scheme and adverse events;

	SAM Score	Percentage	Classification
Judge 1	27	96%	Superior
Judge 2	27	96%	Superior
Judge 3	27	96%	Superior
Judge 4	21	78%	Superior
Judge 5	21	78%	Superior
Judge 6	26	93%	Superior
Judge 7	26	93%	Superior

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[1] Corresponding author: Sarah Vieira Figueiredo. E-mail: sarahvfigueiredo@gmail.com.