The ABC of Cancer Guide: Validation of an Educational Book for Children, Families, and Healthcare Professionals

Mozzilli, Simone Lehwess; Prates, Pedro Emílio Gomes; Pecenin, Isadora Cardoso Salles Fila; Silva, Lucas Thiago Pereira da; Salvetti, Marina de Góes

doi:10.32635/2176-9745.RBC.2024v70n4.4982

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Original Article • Rev. Bras. Cancerol. 70 (4) • 2024 • https://doi.org/10.32635/2176-9745.RBC.2024v70n4.4982 linkcopy

The ABC of Cancer Guide: Validation of an Educational Book for Children, Families, and Healthcare Professionals

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Introduction: The diagnosis of childhood cancer brings fear, distress, and suffering to patients and their families, negatively impacting communication and treatment adherence. Validated educational materials can improve understanding and active participation in care.

Objective: To validate the content of the educational book "The ABC of Cancer Guide" from the perspective of children, adolescents, families, and healthcare professionals.

Method: Methodological study of content validation using the Suitability Assessment of Materials (SAM) method to evaluate material adequacy in six categories (content, language, illustration, presentation, motivation, and cultural adaptation) and indicators of user's experience. Data were collected virtually via Adobe Sign and analyzed with the software Statistical Package for the Social Sciences (SPSS), applying indicators as clarity, vocabulary, attractiveness, and usability.

Results: The study enrolled 12 children and adolescents, 20 family members, and 29 healthcare professionals. The material was validated with scores of 100% by children and adolescents, 98.4% by family members, and 97.6% by healthcare professionals, exceeding the minimum scores of 40% and 60% required to rate the material as adequate or superior. Suggestions for improvement of clarity and vocabulary were made, particularly for audiences with lower health literacy.

Conclusion: "The ABC of Cancer Guide" was validated as an appropriate tool for health education for children undergoing cancer treatment and their families. Future studies are recommended to evaluate the guide's impact on clinical practice and improvement of treatment adherence.

Key words:
Pediatrics; Health Education; Teaching Materials; Treatment Adherence and Compliance; Child Health

Questionnaire for children and adolescents		Questionnaire for adults
Variable of Validation: Content
Purpose	Does "The ABC of Cancer Guide" help you to understand cancer, treatment, procedures and words of the oncologic world?	Does "The ABC of Cancer Guide" demystify cancer in a simple and accessible way?
Organization	Is "The ABC of Cancer Guide" organized and easy to find what you are looking for?	Is "The ABC of Cancer Guide" organized, making it easy to find the information?
Reliability	Is "The ABC of Cancer Guide" reliable and do you believe in its content?	Are the information presented by "The ABC of Cancer Guide" reliable and true?
Variable of Validation: Language
Clarity	Are the texts of "The ABC of Cancer Guide" easy to read and understand?	Are the texts of "The ABC of Cancer Guide" clear and easy to be read and understood?
Style of the text	Is "The ABC of Cancer Guide" funny?	Has the texts of "The ABC of Cancer Guide" been drafted in a coherent, simple and objective style?
Vocabulary	Were the texts of "The ABC of Cancer Guide" explained in words you were able to understand?	Were the words utilized in "The ABC of Cancer Guide" easy to understand?
Variable of Validation: Presentation
Layout	The drawings and text of "The ABC of Cancer Guide" facilitate the understanding?	The presentation of "The ABC of Cancer Guide" with drawings and texts facilitates learning?
Images	Are the images of "The ABC of Cancer Guide" explanatory and help to understand the text?	Are the images of "The ABC of Cancer Guide" explanatory and complement the texts?
Typography	Has the color, size and form of the letters utilized in "The ABC of Cancer Guide" made reading easy and fun?	Has the color, size and form of "The ABC of Cancer Guide" facilitated reading?
Variable of Validation: User experience
Attractiveness	Did you want to open and read "The ABC of Cancer Guide" because you thought it was fun?	Is "The ABC of Cancer Guide" attractive to make you want to read it?
Interaction	Is "The ABC of Cancer Guide" interesting and you want to use it more?	Is "The ABC of Cancer Guide" interesting and stimulates the interaction with the material?
Involvement	Does "The ABC of Cancer Guide" help you to understand and contribute to the treatment?	Does "The ABC of Cancer Guide" promote learning and facilitate the collaboration with the treatment?
Usability	Is "The ABC of Cancer Guide" easy to use?	Is the format of "The ABC of Cancer Guide" easy-to-use?

Children and adolescents
Clinical and sociodemographic variables	n (%)
Sex
Female	9 (75.0%)
Male	3 (25.0%)
Age range (years)
05 – 11	4 (33.3%)
12 – 23	8 (66.6%)
Birth region
Northeast	4 (33.3%)
Southeast	6 (50.0%)
South	2 (16.6%)
Education
Elementary school I	2 (16.6%)
Elementary school II	4 (33.3%)
High school	6 (50.0%)
Type of cancer
Leukemia	4 (33.3%)
Lymphoma	4 (33.3%)
Neuroblastoma	3 (25.0%)
Central Nervous System	1 (8.3%)
Phase of the treatment when the guide was received
Treatment	4 (33.3%)
Follow-up	4 (33.3%)
Recently diagnosed	2 (16.6%)
Maintenance	1 (8.3%)
Palliative care	1 (8.3%)
Treatments performed
1	10 (83.3%)
> 1	1 (16.6%)
Duration of the last treatment (years)
0 - 2	7 (58.3%)
> 2	5 (41.6%)

Adults – relatives and companions
Sociodemographic variables	n (%)
Sex
Female	19 (95.0%)
Male	1 (5.0%)
Age range (years)
18 – 30	3 (15.0%)
31 – 45	12 (60.0%)
46 – 60	4 (20.0%)
> 60	1 (5.0%)
Region of birth
Northeast	3 (15.0%)
Midwest	1 (5.0%)
Southeast	15 (75.0%)
South	1 (5.0%)
Education
High school	11(55.0%)
Graduation	4 (20.0%)
Post-graduation	5 (25.0%)
Kinship with the recipient of the Guide
Mother	17 (85.0%)
Father	1 (5.0%)
Aunt	1 (5.0%)
Voluntary	1 (5.0%)
Previous knowledge of oncology
Lay	16 (80.0%)
Previous knowledge	4 (20.0%)

Suggestions of relatives and companions to "The ABC of Cancer Guide"
Category	Evaluation	Suggestion
Text style	Disagree	Texts are clear, but I don't think they are funny
Attractiveness	Partially agree	Actually, no one thinks reading about cancer is fun, but I agree that the explanation is easy to understand
Interaction	Partially agree	It is not the kind of book we need to read several times. Once is enough, and later as a reference
Usability	Partially agree	It is very good

Suggestions of health professionals for the "ABC of Cancer"
Category	Evaluation	Suggestion
Purpose	Partially agree	Maybe focus more on the treatment and possibility of cure
Purpose	Partially agree	Many patients and their families had doubts about a few words utilized in the explanations. The target-public of our hospital is 100% SUS, most of them are illiterate
Clarity	Partially agree	Same response of the first item. For poorly educated population it is hard to understand
Vocabulary	Partially agree	Again, for poorly educated patients and their families, it is somewhat difficult to understand
Images	Partially agree	Some images could best illustrate the situation described, facilitating children's understanding
Images	Partially agree	For children, it is satisfactory, but some in-depth information might be necessary for adolescents
Images	Partially agree	Images need to be clearer
Typography	Partially agree	For children, upper case letters would be better

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Instituto Nacional de Câncer Rua Marquês de Pombal, 125 - 2º andar, Centro , CEP 20230-240, Tel.: +55 21 3207-6132 - Rio de Janeiro - RJ - Brazil
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