Tele-education about cleft lip and palate: development of an educational website about cleft lip and palate

Melissa Picinato-Pirola Marilia Gabriela Gonçalves Ribeiro Raíssa Gomes Magalhães Thiago Pestillo Seles Camila de Castro Corrêa About the authors

RESUMO

Objetivo

elaborar um website de cunho educacional sobre fissura labiopalatina para profissionais e estudantes da área da saúde.

Métodos

trata-se de um estudo qualitativo, exploratório, estruturado a partir da proposta de design instrucional, composta por quatro fases: análise e planejamento (busca nas bases científicas), modelagem (estruturação com o conteúdo, ilustrações e questionário), avaliação (por especialistas que atuam na área) e implementação (disponibilização do website).

Resultados

na fase de análise e planejamento foram encontrados 408 artigos para estruturar os tópicos do website. Na modelagem, o conteúdo foi dividido em 7 seções, criadas 16 imagens estáticas e um questionário avaliativo. Na fase de avaliação, participaram 10 fonoaudiólogas especialistas que sugeriram a manutenção de 7 seções no website. Todas as avaliações com sugestões de modificações que tiveram índice de concordância abaixo de 90% foram atendidas, tanto no conteúdo, como no questionário. Após, o website foi reformulado, assim como o questionário, para futura avaliação dos usuários. O website está disponibilizado em www.fissuralabiopalatina.unb.br.

Conclusão

por meio da sistemática do design instrucional, o website sobre fissuras labiopalatina foi constituído para a orientação de estudantes, profissionais da área da saúde e população em geral.

Palavras-chave:
Fenda labial; Fenda palatina; Educação em saúde; Telemedicina; Fonoaudiologia

ABSTRACT

Purpose

to create an educational website about cleft lip and palate for healthcare professionals and students.

Methods

a qualitative and exploratory study structured from a design proposal consisting of the following four phases: analysis and planning (review of scientific data), modeling (structuring with content and illustrations), evaluation (by experts working in the area) and final implementation (website availability).

Results

in the analysis and planning phase, 408 articles were used to structure the website's topics. In the modeling phase, the content was divided into 7 sections, 16 static images and an evaluative questionnaire were created. In the evaluation phase 10 specialized speech-language pathologists participated and suggested maintaining 7 sections on the website. All evaluations with suggestions for modifications that had an agreement index below 90% were met, both in content and in the questionnaire. Afterward, the website and questionnaire were updated for future user evaluation. The website is available at www.fissuralabiopalatina.unb.br.

Conclusion

we concluded that through systematic instructional design the website about cleft lip and palate was created for the orientating students, healthcare professionals and the public alike.

Keywords:
Cleft lip; Cleft palate; Health education; Telemedicine; Speech, language and hearing sciences

INTRODUCTION

Cleft lip and palate (CLP) are one of the most common malformations that occur during the embryonic period until the 12th gestational week and can cause changes in the functions of sucking, hearing and speech(11 Freitas JAS, Neves LT, Almeida LPF, Garib DG, Trindade-Suedam IK, Yaedú RYF, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) Part 1: overall aspects. J Appl Oral Sci. 2012;20(1):9-15. http://dx.doi.org/10.1590/S1678-77572012000100003. PMid:22437671.
http://dx.doi.org/10.1590/S1678-77572012...
,22 Genaro KF, Yamashita RP, Trindade IEK. Avaliação clínica e instrumental da fala na fissura labiopalatina. In: Fernandes FDM, Mendes BCA, Navas ALGP. Tratado de fonoaudiologia. São Paulo: Editora Roca; 2010. Cap. 53, p. 488-503.). Since health professionals deal directly with patients and their guardians, it is essential that they must know about CLP for guidance and to establish a conduct, additionally it is important that this information is available to the general public(33 Maximino LP, Zambonato TCF, Picolini-Pereira MM, Castro Corrêa C, Feniman MR, Blasca WQ. Development and evaluation of a blog about cleft lip and cleft palate and hearing. Int Arch Otorhinolaryngol. 2018;22(1):60-7. http://dx.doi.org/10.1055/s-0037-1603494. PMid:29371900.
http://dx.doi.org/10.1055/s-0037-1603494...

4 Vanz AP, Ribeiro NRR. Escutando as mães de portadores de fissuras orais. Rev Esc Enferm USP. 2011;45(3):596-602. http://dx.doi.org/10.1590/S0080-62342011000300007. PMid:21710063.
http://dx.doi.org/10.1590/S0080-62342011...
-55 Silva LS, Leandro TP, Macedo FRM, Silva RF, De Souza ALT, Souza BDOP, et al. Orientações recebidas pelas mães de crianças com fissura labiopalatina. Arq Ciênc Saúde. 2015;22(2):88-93. http://dx.doi.org/10.17696/2318-3691.22.2.2015.149.
http://dx.doi.org/10.17696/2318-3691.22....
) because a lack off guidance can negatively influence the therapeutic process of patients with CLP(66 Amaral MIR, Martins JE, Santos MFC. A study on the hearing of children with non-syndromic cleft palate/lip. Braz. J. Otorhinolaryngol. (Impr.). 2010;76(2):164-71. http://dx.doi.org/10.1590/S1808-86942010000200004.
http://dx.doi.org/10.1590/S1808-86942010...
).

The dissemination of information can be done through Tele-health, specifically through Tele-education which allows the transmission of information from information and communication technologies (ICTs), enabling a greater reach, lower costs and greater motivation of the public(77 Wen CL. Telemedicina e Telessaúde: um panorama no Brasil. Inform Pública. [Internet]. 2008 [citado em 2020 Jul 13];10(2):7-15. Disponível em: http://www.ip.pbh.gov.br/ANO10_N2_PDF/telemedicina_telesaude.pdf
http://www.ip.pbh.gov.br/ANO10_N2_PDF/te...
). Concerning Speech, Language and Hearing Sciences publications, these are still prevalent in the areas of audiology and language, being characterized in recent works(88 Molini-Avejonas DR, Rondon-Melo S, de La Higuera Amato CA, Samelli AG. A systematic review of the use of telehealth in speech, language and hearing sciences. J Telemed Telecare. 2015;21(7):367-76. http://dx.doi.org/10.1177/1357633X15583215. PMid:26026181.
http://dx.doi.org/10.1177/1357633X155832...
).

Among the possibilities of Tele-education are websites, represented by virtual pages with a high content flexibility (images, videos and texts), which can serve numerous purposes(99 Significados. Significado de website [Internet]. 2019 [citado em 2019 Abr 11]. Disponível em: https://www.significados.com.br/website
https://www.significados.com.br/website...
). On the other hand, the relative ease of developing and making websites available can culminate in the problem of excess information, which is not always up-to-date, reliable, and supported by scientific content. Recent studies including the field of Speech, Language and Hearing Sciences, have emphasized that, in addition to structuring, developing and disseminating information online, the aspect of evaluating the content and usability of the site must be considered, to guarantee the objective of effectively reaching the target population(1010 Pulga MJ, Spinardi-Panes AC, Lopes-Herrera SA, Maximino LP. Evaluating a speech-language pathology technology. Telemed J E Health. 2014;20(3):269-71. http://dx.doi.org/10.1089/tmj.2013.0052. PMid:24404815.
http://dx.doi.org/10.1089/tmj.2013.0052...

11 Oliveira LF, Corrêa CD, Vieira MM, Blasca WQ, Brasolotto AG. Intervenção fonoaudiológica por meio da teleducação sobre a muda vocal e hábitos vocais. Audiol Commun Res. 2018;23:e1899. http://dx.doi.org/10.1590/2317-6431-2017-1899.
http://dx.doi.org/10.1590/2317-6431-2017...
-1212 Corrêa CC, Freire T, Zabeu JS, Martins A, Ferreira R, Francisconi PA, et al. Teleducation about Cleft Lip and Palate: an interdisciplinary approach in the promotion of health. Int Arch Otorhinolaryngol. 2015;19(2):106-11. http://dx.doi.org/10.1055/s-0034-1544114. PMid:25992163.
http://dx.doi.org/10.1055/s-0034-1544114...
).

This aim of this study was to develop a virtual learning environment (VLE), in the form of a website with the aim of providing general guidance on CLP for health professionals and students, in addition to creating a questionnaire on the subject with the objective of ascertaining their knowledge of CLP.

METHODS

This is a qualitative and exploratory study, approved by the Research Ethics Committee at the University of Brasília (UnB), number 3.159.051.

The development of the website was supported by updated scientific data and the contribution of the evaluations by specialized professionals experienced in cleft lip and palate. The process was structured based on the instructional design proposal, composed of four phases: analysis and planning, modeling, implementation and evaluation(1313 Filantro A, Piconez SCB. Design instrucional contextualizado: planejamento, elaboração e avaliação de materiais didáticos para Educação a Distância [Internet]. São Paulo: ABED; 2004 [citado em 2011 Abr 19]. Disponível em: http://www.abed.org.br/congresso2004/por/pdf/049-TC-B2.pdf
http://www.abed.org.br/congresso2004/por...
).

1st Phase - Analysis and Planning

Basic scientific data on cleft lip and palate content were used by accessing LILACS, SciELO and PubMed.

The searches were carried using the following script:

  1. 1

    Definition

  2. 2

    Impact

  3. 3

    Etiology

  4. 4

    The type of cleft lip and palate

  5. 5

    Diagnosis

  6. 6

    Primary surgeries

  7. 7

    Professionals involved in the treatment

  8. 8

    Oral hygiene

  9. 9

    Ways of eating

  10. 10

    Hearing

  11. 11

    Speech

  12. 12

    Language

2nd Phase - Modeling

After the elaboration of the script and searches were performed, the information for the website was built, using Microsoft PowerPoint 2010, for viewing the content together with the graphics features.

Existing videos and images were selected and available on the internet, to aid better understanding of the subjects covered.

In addition to structuring the website, a specific questionnaire was prepared, based on the bibliographic survey carried out in the 1st phase and the aspects listed for constructing the website, so that the relevance of its content could be analyzed by the evaluators.

3rd Phase - Evaluation

Selection of Evaluators

To choose the participants in the evaluation process of the website, speech-language pathologists with experience in CLP and working in institutions other than the institution responsible for the study were selected for inclusion. Speech therapists who did not complete all stages of the study were excluded.

After accepting the invitation, the objective of the study was explained and instructions were sent out. All participants signed a Free and Informed Consent Form, which was available online. At this stage of the study, the website did not have a domain name, so in order to be able to access the content of the pages it was offered in PDF format, with a pre-established period of three days for participants to carry out the evaluation of the website. It was necessary to extend the deadline for another eight days, due to the difficulties of joining.

Website content evaluation protocol

To evaluate the theoretical content of the website, the quantitative measure of agreement percentage was used to measure interobserver agreement, using the following formula:

% a g r e e m e n t = N u m b e r o f p a r t i c i p a n t s i n a g r e e m e n t T o t a l n u m b e r o f p a r t i c i p a n t s × 100 (1)

A rate of 90% was considered an interobserver agreement index(1414 Alexandre NM, Coluci MZ. Validade de conteúdo nos processos de construção e adaptação de instrumentos de medidas. Cien Saude Colet. 2011;16(7):3061-8. http://dx.doi.org/10.1590/S1413-81232011000800006. PMid:21808894.
http://dx.doi.org/10.1590/S1413-81232011...
), that is content with an agreement rate of 90% or more was considered acceptable (without any need for modification).

To evaluate the website, a questionnaire was designed and made available on Google Forms, in which the theoretical content of the website was evaluated, with regard to the scope and quality, in the view of the evaluators. The evaluation options were agree, disagree and/or provide suggestions. In the same question, it was possible to select both answer options and make suggestions regardless of the option selected.

The informational aspect of the website was found to be adequate because all the answers given by the evaluating speech-language pathologists were considered and modifications were made according to their suggestions.

Questionnaire evaluation protocol

A questionnaire was prepared to assess the knowledge of students and health professionals about cleft lip and palate, so that afterward it would be possible to compare their knowledge before and after using the website.

The evaluation of the questionnaire was carried out by the same evaluators, and each question was judged in a format of predefined answers (satisfactory or unsatisfactory), after which it was possible to make suggestions for changes. The quantitative measure of the agreement percentage was also used, considering 90% as a measure of interobserver agreement(1414 Alexandre NM, Coluci MZ. Validade de conteúdo nos processos de construção e adaptação de instrumentos de medidas. Cien Saude Colet. 2011;16(7):3061-8. http://dx.doi.org/10.1590/S1413-81232011000800006. PMid:21808894.
http://dx.doi.org/10.1590/S1413-81232011...
), as described in the previous item.

4th Phase - Implementation

The website was designed to disseminate information to people from different parts of the country, expanding the reach of scientific information to the public. The content, enhanced by illustrations was implemented through a free platform, which allowed the structuring of its transmission.

Subsequently, considering the need to improve the visual aspect of the website and also to characterize the scientific stringency, the assistance of a web designer was contracted to carry out the adaptation and standardization of the graphic content (attributing to the website's redesign character), in addition to the support of the institute's IT Department, to transfer it to the official platform of the institution to which the project is linked. Guidance was received on how to prepare a register to choose the template and, the sector provided the necessary technical support for creating the site and availability of the website was carried out by Joomla (content management system).

With the objective of establishing an inclusive design with the aim of promoting an approach that could reach the largest number of people, illustrations were created with a focus on clarifying the information on the page, resulting in greater efficiency in communication and helping to make the content easy to understand and remember. For this purpose the following parameters were considered(1515 Iervolino SMS. Elaboração de um guia informativo para pais de crianças candidatas a cirurgia de Implante Coclear. São Paulo: Faculdade de Ciências Médicas, Santa Casa de São Paulo; 2016.

16 Serrasqueiro VB. Materiais educacionais voltados às crianças com transtornos de Aprendizagem: diretrizes sob a ótica do design gráfico inclusivo [dissertação]. Bauru: Universidade Estadual Paulista. Faculdade de Arquitetura, Artes e Comunicação; 2018.
-1717 Wizowski L, Harper T, Hutchings T. Writing health information for patients and families - A guide to developing educational materials that promote health literacy. 4th ed. Ontário, Canadá: Hamilton Health Sciences; 2014.), raised in the elaboration of the images:

Technical Factors:

  • The use of simple lines were emphasized to facilitate communication, which had to be understandable and appropriate to the end user;

  • The identity of the project generated a visual link with the university and its website;

  • Colors were used to link writing and images to dashes and arrows.

  • Variations in style and design were avoided for the purpose of maintaining standardization;

  • The images used were of appropriate quality and size, avoiding low quality images or images that exceed the size supported by the website, which could result in longer loading times of the page;

  • Descriptions were positioned closely to the figures.

Symbolic Factors:

  • It was created characters that appears several times during the project, in order to generate empathy;

  • Familiar representations were used to ensure ease of identification and more natural representations;

  • To entice users to spend a longer time on the website, contextualized and informative static images were created to be aesthetically pleasing and stimulating for the user.

RESULTS

1st Phase - Analysis and planning

Research was carried out of existing scientific data. The distribution of topics and number of articles is shown in Figure 1.

Figure 1
Themes in the databases of the literature search to the theoretical foundation of the content on cleft lip and palate.

The topics proposed in the script were structured using the previously mentioned research. The language was simplified to be as direct as possible with specific information, to attain an attractive and accessible content for the diverse audience that the site aimed to reach.

2nd Phase - Modeling

The content was divided into 7 sections, as follows: objective of the site, definition, causes, treatments (primary surgeries), curiosities, types of cleft and frequent doubts, the last two being divided into subsections, which include cleft lip and palate, submucosal cleft, food, hearing, speech and language.

According to the structuring of the subject added to the content, 16 static images were created by the designer for ease of understanding of the information and to motivate the user to explore the entire content of the website.

3rd Phase - Evaluation

Selection of the Evaluators

In total, 21 speech-language pathologists with experience in CLP were invited by e-mail to participate, 10 females responded to the e-mail and completed all the phases of the study. All of them had relevant experience, or had worked in reference centers in the CLP service. The average number of years of experience of the speech therapists, specifically with CLP, was 18.9 years, varying between 8 and 36 years (Table 1).

Table 1
Average experience of evaluators with cleft lip and palate in years

Website content evaluation protocol

Evaluation of the website was as follows, the interobserver agreement rate reached was 90% in the delivery item, which did not have any changes. The other items did not reach an interobserver agreement value of 90%, however they presented an agreement value of 80% in relation to the appearance of the website and definition of CLP 72.7%, in the CLP incidence item 70%, in the etiology and professional items involved in the treatment 60%, in the items types of CLP and diagnosis 58.3%, in the item oral hygiene 50%, in the items food, hearing and speech 45.5% and in the item primary surgeries see (Box 1).

Box 1
Response of the evaluators on the appearance and theoretical content of the website

When the changes were made to the site the suggestions of the evaluators were taken into account and the areas that underwent changes regarding the theoretical basis were: the classification of the types of CLP, period of primary surgery, diagnosis, feeding, oral hygiene, hearing and speech. The other areas, such as the appearance of the website, the definition of CLP, etiology, incidence and professionals involved in the treatment had no changes made to the theoretical content, only changes in relation to the way they were cataloged in the problem (Box 1).

Questionnaire evaluation protocol

In the analysis of the questionnaire, the questions regarding the definition of CLP, the gestational period in which the CLP types occur, diagnosis, primary surgeries, food and speech had their statements and answer options changed. The statement was changed for the question regarding the etiology and the question about the CLP classifications was removed. A question about diagnosis after birth and a question about oral hygiene were added. The questions about the type of delivery, the need for a multidisciplinary team and the relevance of the study did not change (Box 2).

Box 2
Evaluation of questions for preparing the questionnaire before and after accessing the website, to measure the impact of cleft lip and palate information.

Therefore, considering the suggestions of the evaluators, the design of the questionnaire was completed, resulting in an instrument with 17 questions (Appendix 1).

4th Phase - Implementation

The website was developed and is live at: www.fissuralabiopalatina.unb.br(1818 UNB: Universidade de Brasília. Fissura Labiopalatina [Internet]. Brasília: UNB; 2020 [citado em 2020 Abr 20]. Disponível em: www.fissuralabiopalatina.unb.br)

To exemplify the aforementioned steps, images of the website were detailed before and after the redesign with the support of the Information Systems Directorate of the original institution (Figure 2).

Figure 2
Prints illustrating the first format of the website on the left, and examples of how the website is after the redesign and allocation on the page of the responsible institution

DISCUSSION

The development of the website arose from a requirement to provide general and up to date information about CLP to students and health professionals alike, because CLP is a common condition, they will come across frequently in their careers. The provision of general guidance on CLP through a website was considered highly relevant because of its ease of access, and it can assist with therapeutic management. On the other hand, it is important that the public have access to such information, because even after consultations communication failures between patients and healthcare professionals can occur, resulting in difficulties in understanding some issues addressed(1515 Iervolino SMS. Elaboração de um guia informativo para pais de crianças candidatas a cirurgia de Implante Coclear. São Paulo: Faculdade de Ciências Médicas, Santa Casa de São Paulo; 2016.,1616 Serrasqueiro VB. Materiais educacionais voltados às crianças com transtornos de Aprendizagem: diretrizes sob a ótica do design gráfico inclusivo [dissertação]. Bauru: Universidade Estadual Paulista. Faculdade de Arquitetura, Artes e Comunicação; 2018.).

To reinforce the purpose of this study, an investigation of 100 mothers of children with CLP found that 32 of 100 mothers felt a lack of guidance in some aspects of CLP by health care professionals who had attended their children. This emphasizes the importance of training professionals together with other means of improving their knowledge(55 Silva LS, Leandro TP, Macedo FRM, Silva RF, De Souza ALT, Souza BDOP, et al. Orientações recebidas pelas mães de crianças com fissura labiopalatina. Arq Ciênc Saúde. 2015;22(2):88-93. http://dx.doi.org/10.17696/2318-3691.22.2.2015.149.
http://dx.doi.org/10.17696/2318-3691.22....
).

Concerning the specific subject of CLP aimed at guiding professionals and students information is scarce, however it demonstrates the importance of raising awareness among the child population in order to create a more favorable environment for inclusion and minimizing prejudice against children and others with CLP(1212 Corrêa CC, Freire T, Zabeu JS, Martins A, Ferreira R, Francisconi PA, et al. Teleducation about Cleft Lip and Palate: an interdisciplinary approach in the promotion of health. Int Arch Otorhinolaryngol. 2015;19(2):106-11. http://dx.doi.org/10.1055/s-0034-1544114. PMid:25992163.
http://dx.doi.org/10.1055/s-0034-1544114...
). A blog was developed to give guidelines for healthcare professionals, which used the Emory questionnaire as a tool to measure quality(33 Maximino LP, Zambonato TCF, Picolini-Pereira MM, Castro Corrêa C, Feniman MR, Blasca WQ. Development and evaluation of a blog about cleft lip and cleft palate and hearing. Int Arch Otorhinolaryngol. 2018;22(1):60-7. http://dx.doi.org/10.1055/s-0037-1603494. PMid:29371900.
http://dx.doi.org/10.1055/s-0037-1603494...
). What differentiated the present study was the concern with the development of a specific instrument for further evaluation, which would make it possible to measure knowledge about CLP. Thus, in the future, after accessing the website it would be possible to compare before and after knowledge.

In addition, since it is a specific and theoretical subject, with information about CLP, the evaluation was considered important, proving its quality through the analysis and agreement(1414 Alexandre NM, Coluci MZ. Validade de conteúdo nos processos de construção e adaptação de instrumentos de medidas. Cien Saude Colet. 2011;16(7):3061-8. http://dx.doi.org/10.1590/S1413-81232011000800006. PMid:21808894.
http://dx.doi.org/10.1590/S1413-81232011...
) of experts in the area and ensuring that the topics presented would convey a message, structured effectively and allowing the instrument to be widely used in future studies.

Ten speech-language pathologists were evaluated as potential evaluators, attributing less casuistry due to the careful admission of evaluators to participate in this study. All the evaluators had practical experience in the care of patients with CLP, with an average of 18.9 years work experience with CLP in speech therapy, working in different institution, without any conflict of interest, in order not to positively or negatively influence the website or the questionnaire.

Another example of providing information to help caregivers of patients with CLP about the velopharyngeal function, speech and surgery to correct CLP, consisted of information being made available through multimedia in PowerPoint. After comparing the caregivers' knowledge before and after they accessed the multimedia material, it was found that 61% of answers were initially correct but afterwards they achieved on average 86% of correct answers(1717 Wizowski L, Harper T, Hutchings T. Writing health information for patients and families - A guide to developing educational materials that promote health literacy. 4th ed. Ontário, Canadá: Hamilton Health Sciences; 2014.), this shows the positive effect of multimedia and how it made a positive contribution to the knowledge of the public.

After the suggestions made by the evaluators, various content areas of the website were modified including the following: FLP (60% agreement between the evaluators), forms of diagnosis before and after birth (60% agreement), period of completion of the primary surgeries (45.5% agreement), food (50% agreement), hearing (50% agreement), oral hygiene (58.3% agreement) and speech (50% agreement) (Box 1). There were other items on the site that had suggestions for changes in relation to the form of presentation, with the exception of only the delivery item, which was not changed. Despite the changes that have already been made, there is a plan to perform further assessments, as well as other pertinent changes, in addition to constant updates, assuming that knowledge is dynamic and the need for access to information is variable over time and generations.

As an example of evaluation and suggestions about different forms of diagnosis of cleft lip, palate or lip and palate, a two-dimensional or three-dimensional ultrasound can be performed during the prenatal period. In some cases, there may not be prenatal diagnosis due to the baby's position(1919 Linn AJ, van Dijk L, Smit EG, Jansen J, van Weert JC. May you never forget what is worth remembering: the relation between recall of medical information and medication adherence in patients with inflammatory bowel disease. J Crohns Colitis. 2013;7(11):e543-50. http://dx.doi.org/10.1016/j.crohns.2013.04.001. PMid:23660489.
http://dx.doi.org/10.1016/j.crohns.2013....
,2020 Araújo E Jr, Guimarães HA Fo, Pires CR, Zanforlin SM Fo, Santana RM, Moron AF. Fendas fetais labiais e palatinas detectadas pela ultra-sonografia tridimensional. Revista Imagem. 2005;27(4):263-8.). For these cases, the diagnosis will be made after birth, through clinical evaluation associated with instrumental evaluation(2121 Demathé T, Cunha L. Compreensão, pelos acompanhantes, do conteúdo da receita médica nos atendimentos pediátricos em postos de saúde. ACM arq. catarin. Med. 2008;37(2):51-8.,2222 Di Ninno CQ, Gonçalves KC, Braga MS, Miranda IC. Prevalência de fissura de palato submucosa associada à fissura labial. Rev Soc Bras Fonoaudiol. 2011 Set;16(3):304-9. http://dx.doi.org/10.1590/S1516-80342011000300011.
http://dx.doi.org/10.1590/S1516-80342011...
), and concerning this aspect 60% of the evaluators agreed with what was presented on the website, which described the prenatal diagnosis. However, they recommended adding the diagnosis after birth, and, in their suggestions, two of the evaluators (20%) considered the clinical evaluation after birth to be the most accurate form of diagnosis.

Concerning the evaluation of the questionnaire, only the question regarding the treatment of patients with cleft lip and palate within a multidisciplinary team was not modified, since 90% of the evaluators were in agreement over this question. The remaining questions were modified according to the suggestions presented (Box 2). The lowest levels of agreement were in the questions regarding primary surgery of CLP and food, both of which had a 30% agreement.

Regarding primary surgery, in the questionnaire prior to the modifications, there were options for the exact periods for performing cheiloplasty and palatoplasty procedures. After the suggestions, we attempted to define up to what age these procedures may be performed. The change in this issue was relevant, as the period for performing primary surgery will depend on the protocol adopted by each specialized center, but it is common during the first year of a baby’s life(11 Freitas JAS, Neves LT, Almeida LPF, Garib DG, Trindade-Suedam IK, Yaedú RYF, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) Part 1: overall aspects. J Appl Oral Sci. 2012;20(1):9-15. http://dx.doi.org/10.1590/S1678-77572012000100003. PMid:22437671.
http://dx.doi.org/10.1590/S1678-77572012...
,2323 Costa TL, Souza OMV, Carneiro HA, Chiquito C No, Pegoraro-Krook MI, Dutka JDCR. Material multimídia para orientação dos cuidadores de bebês com fissura labiopalatina sobre velofaringe e palatoplastia primária. CoDAS. 2016 Fev;28(1):10-6. http://dx.doi.org/10.1590/2317-1782/20162014126. PMid:27074183.
http://dx.doi.org/10.1590/2317-1782/2016...
).

Concerning the question about feeding, the questionnaire presented to the evaluators had the objective of clarifying which means of feeding was chosen for babies with CLP. After the suggestions, the objective of the question was to identify whether the participants were aware of whether babies with CLP could be breastfed or not. Babies with CLP may experience difficulties in breastfeeding due to the presence of weak intraoral pressure in cases of cleft palate(11 Freitas JAS, Neves LT, Almeida LPF, Garib DG, Trindade-Suedam IK, Yaedú RYF, et al. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) Part 1: overall aspects. J Appl Oral Sci. 2012;20(1):9-15. http://dx.doi.org/10.1590/S1678-77572012000100003. PMid:22437671.
http://dx.doi.org/10.1590/S1678-77572012...
,55 Silva LS, Leandro TP, Macedo FRM, Silva RF, De Souza ALT, Souza BDOP, et al. Orientações recebidas pelas mães de crianças com fissura labiopalatina. Arq Ciênc Saúde. 2015;22(2):88-93. http://dx.doi.org/10.17696/2318-3691.22.2.2015.149.
http://dx.doi.org/10.17696/2318-3691.22....
), however, it is important to note that breastfeeding in many cases is possible, even when a baby has a cleft palate, and breastfeeding should be encouraged.

Based on our findings, there is a need for further studies related to the knowledge of healthcare professionals and students on CLP, as well as the importance of disseminating information on the subject to guide those who are responsible for children with CLP.

CONCLUSION

Through systematic instructional design the orientation website was designed for students and healthcare professionals alike, having been improved by the suggestions made by speech-language pathologists with experience in CLP. The website is available at www.fissuralabiopalatina.unb.br

Appendix 1   Questionnaire for assessing the knowledge of students and healthcare professionals about cleft lip and palate after the evaluators' suggestions

1. In your opinion, what is isolated cleft lip and palate?

a. () A Deficiency

b. () A Syndrome

c. () A Malformation

d. () Don’t know

2. Do you consider that the incidence of cleft lip and palate is?

a. () Rare (1:650.000 newborns alive)

b. () Common (1:650 newborns alive)

c. () Don’t know

3. The cause of cleft lip and palate is known?

a. () Yes

b. () No

3.1 Describe in your opinion the cause of cleft lip and palate.

4. Cleft lip and palate occurs at which stage of the gestation period?

a. () Up to 12 weeks

b. () From 12 to 21 weeks

c. () From 26 to 30 weeks

d. () From 34 weeks

e. () Don’t know

5. By what name do you know cleft lip and palate:

a. () Cleft lip and palate

b. () Harelip

c. () Wolf's throats

d. () Don’t know

e. () Other

6. Diagnosis can be made at the prenatal stage?

a. () Yes

b. () No

c. () Don’t know

7. What is the best way to diagnose cleft palate after birth?

b. () Two dimensional Ultrasound

c. () Three dimensional Ultrasound

d. () Radiography

e. () Cephalometry

f. () MRI

g. () Tomography

h. () Clinical Evaluation/intraoral

i. () Other

j. () Don’t know

8. Are there some restrictions on the type of delivery for children with isolated cleft lip and palate?

a. () Yes

b. () No

c. () Don’t know

9. Do you believe that the treatment of patients with cleft lip and palate depends on a multi-professional team?

a. () Yes

b. () No

c. () Don’t know

9.1 Which professionals do you think should be involved in the treatment of CLP?

10. To correct cleft lip and palate, surgical procedures used are called primary surgeries. At what age do they usually begin to carry out primary surgery?

a. () In the first days of life

b. () Up to 6 months

c. () Up to one year old

d. () Don’t know

11. Can babies with cleft lip be breastfed?

a. () Yes

b. () No

c. () Don’t know

12. Is the use of a probe at birth recommended for babies who have cleft lip and palate without other impairments:

a. () Yes

b. () No

c. () Don’t know

13. Are sufferers of cleft palate more likely to develop hearing disorders?

a. () Yes

b. () No

c. () Don’t know

14. Do you think that the speech abilities of a child with cleft lip can be altered after surgery?

a. () Yes

b. () No

15.Do all children with cleft lip and palate require speech therapy?

a. () Yes

b. () No

16. Should oral/nasal hygiene be performed for children with cleft lip and palate?

a. () Yes

b. () No

17. Did you consider the orientation program relevant? (Only to be answered after the program)

a. () Yes

b. () No

Suggestions / criticisms / praise for the orientation program:

_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

  • Study carried out at Faculdade de Ceilândia, Universidade de Brasília – UNB – Brasília (DF), Brasil.
  • Funding:

    Fundação de Apoio à Pesquisa do Distrito Federal (FAPDF) - promoted carrying out the research (contract number: 0193.001520/2017).

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Publication Dates

  • Publication in this collection
    17 May 2021
  • Date of issue
    2021

History

  • Received
    13 Oct 2020
  • Accepted
    27 Jan 2021
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