Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Instrument
- Conceptualization: key aspects allowing understanding of rare diseases, from definitions to characteristics, prevalence, and types;
- Legislation: legislative frameworks influencing the educational response to these students that teachers should be aware of;
- Intervention: practical aspects affecting teaching and learning processes with these students in schools;
- Diagnosis: content related to identifying these students, warning signs, characteristics, and procedures, as well as assessment of the level of awareness about detection and research in the field.
- The structure of the instrument is given below (Table 1).
2.3. Procedure and Data Analysis
3. Results
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Dimension | Items |
---|---|
Conceptualization | 1. I know what a rare disease is 2. I know the categories that the different types of rare diseases fall into 3. I know how prevalent the rare diseases I have dealt with in my school are at a national or international level. 4. When I have had a student with a rare disease in my class, I knew what their main characteristics were 5. I have maintained contact from the school with patient advocacy groups that deal with rare diseases |
Legislation | 6. I know the educational inclusion legislation in our region 7. I know the content of the most recent education legislation, especially about student educational needs 8. I have read and understand the article in the Spanish Constitution which describes the right to education for all 9. I understand the importance of there being a law aimed at educational inclusion 10. Within my teaching, I believe inclusive education to be important, and therefore the principles of inclusion must be applied in the classroom |
Intervention | 11. I have had, or still have, a student in my class with a rare disease 12. I have educated myself about the signs and symptoms students may exhibit if they suffer from a rare disease 13. I think the family-school relationship is essential for proper intervention for students with rare diseases 14. I know specific activities to do with these students15. I am able to advise and guide other teachers about activities with these students |
Diagnosis | 16. I know the warning signs a student with a possible rare disease may present 17. I educate myself and try to contact other diagnosed cases in order to improve the education I give to students with rare diseases that I might encounter as a teacher 18. I know how to clinically diagnose a rare disease 19. I think the relationship between the school and the families is essential in order to be able to properly detect and help an initial diagnosis 20. I am aware of the need for more research to help diagnosis and treatment |
Minimum | Maximum | M | SD | Asymmetry | Kurtosis |
---|---|---|---|---|---|
24 | 100 | 66.49 | 16.41 | −0.19 | −0.82 |
Item | Scores | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | ||||||
F | % | f | % | f | % | f | % | f | % | |
IT1 | 14 | 2.44 | 74 | 12.89 | 125 | 21.78 | 174 | 30.31 | 187 | 32.58 |
IT2 | 246 | 42.86 | 147 | 25.61 | 114 | 19.86 | 51 | 8.89 | 16 | 2.79 |
IT3 | 228 | 39.72 | 133 | 23.17 | 107 | 18.64 | 65 | 11.32 | 41 | 7.14 |
IT4 | 66 | 11.50 | 132 | 23.00 | 132 | 23.00 | 156 | 27.18 | 88 | 15.33 |
IT5 | 146 | 25.44 | 129 | 22.47 | 117 | 20.38 | 119 | 20.73 | 63 | 10.98 |
Item | M | SD | Asymmetry | Kurtosis |
---|---|---|---|---|
IT1 | 3.78 | 1.11 | −0.55 | −0.65 |
IT2 | 2.03 | 1.11 | 0.82 | −0.25 |
IT3 | 2.23 | 1.28 | 0.72 | −0.62 |
IT4 | 3.12 | 1.25 | −0.11 | −1.04 |
IT5 | 2.69 | 1.34 | 0.21 | −1.18 |
Total | 13.85 | 4.74 | 0.20 | −0.88 |
Item | Scores | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | ||||||
F | % | f | % | f | % | f | % | f | % | |
IT6 | 34 | 5.92 | 43 | 7.49 | 118 | 20.56 | 157 | 27.35 | 222 | 38.68 |
IT7 | 118 | 20.56 | 80 | 13.94 | 97 | 16.90 | 134 | 23.34 | 145 | 25.26 |
IT8 | 18 | 3.14 | 39 | 6.79 | 95 | 16.55 | 150 | 26.13 | 272 | 47.39 |
IT9 | 6 | 1.05 | 9 | 1.57 | 57 | 9.93 | 135 | 23.52 | 367 | 63.94 |
IT10 | 8 | 1.39 | 14 | 2.44 | 51 | 8.89 | 147 | 25.61 | 354 | 61.67 |
Item | M | SD | Asymmetry | Kurtosis |
---|---|---|---|---|
IT6 | 3.85 | 1.19 | −0.84 | −0.15 |
IT7 | 3.19 | 1.47 | −0.24 | −1.34 |
IT8 | 4.08 | 1.09 | −1.06 | 0.31 |
IT9 | 4.48 | 0.82 | −1.71 | 2.99 |
IT10 | 4.44 | 0.86 | −1.73 | 3.03 |
Total | 20.03 | 4.10 | −0.66 | −0.18 |
Item | Scores | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | ||||||
f | % | f | % | f | % | f | % | f | % | |
IT11 | 191 | 33.28 | 127 | 22.13 | 82 | 14.29 | 61 | 10.63 | 113 | 19.69 |
IT12 | 78 | 13.59 | 79 | 13.76 | 57 | 9.93 | 124 | 21.60 | 236 | 41.11 |
IT13 | 10 | 1.74 | 19 | 3.31 | 39 | 6.79 | 112 | 19.51 | 394 | 68.64 |
IT14 | 106 | 18.47 | 125 | 21.78 | 121 | 21.08 | 135 | 23.52 | 87 | 15.16 |
IT15 | 201 | 35.02 | 86 | 14.98 | 111 | 19.34 | 105 | 18.29 | 71 | 12.37 |
Item | M | SD | Asymmetry | Kurtosis |
---|---|---|---|---|
IT11 | 2.61 | 1.52 | 0.44 | −1.28 |
IT12 | 3.63 | 1.47 | −0.64 | −1.06 |
IT13 | 4.50 | 0.89 | −2.03 | 3.88 |
IT14 | 2.95 | 1.34 | 0.01 | −1.20 |
IT15 | 2.58 | 1.43 | 0.30 | −1.29 |
Total | 16.27 | 5.40 | −0.10 | −1.11 |
Item | Scores | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | ||||||
f | % | f | % | f | % | f | % | f | % | |
IT16 | 160 | 27.87 | 146 | 25.44 | 130 | 22.65 | 107 | 18.64 | 31 | 5.40 |
IT17 | 106 | 18.47 | 127 | 22.13 | 121 | 21.08 | 144 | 25.09 | 76 | 13.24 |
IT18 | 278 | 48.43 | 126 | 21.95 | 103 | 17.94 | 45 | 7.84 | 22 | 3.83 |
IT19 | 24 | 4.18 | 41 | 7.14 | 53 | 9.23 | 113 | 19.69 | 343 | 59.76 |
IT20 | 7 | 1.22 | 9 | 1.57 | 18 | 3.14 | 68 | 11.85 | 472 | 82.23 |
Item | M | SD | Asymmetry | Kurtosis |
---|---|---|---|---|
IT16 | 2.48 | 1.23 | 0.33 | −0.99 |
IT17 | 2.93 | 1.32 | 0.00 | −1.18 |
IT18 | 1.97 | 1.15 | 0.98 | −0.00 |
IT19 | 4.24 | 1.14 | −1.45 | 1.07 |
IT20 | 4.72 | 0.71 | −3.18 | 10.99 |
Total | 16.33 | 4.22 | −0.26 | −0.36 |
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García-Perales, R.; Palomares-Ruiz, A.; Ordóñez-García, L.; García-Toledano, E. Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers. Int. J. Environ. Res. Public Health 2022, 19, 6057. https://doi.org/10.3390/ijerph19106057
García-Perales R, Palomares-Ruiz A, Ordóñez-García L, García-Toledano E. Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers. International Journal of Environmental Research and Public Health. 2022; 19(10):6057. https://doi.org/10.3390/ijerph19106057
Chicago/Turabian StyleGarcía-Perales, Ramón, Ascensión Palomares-Ruiz, Lydia Ordóñez-García, and Eduardo García-Toledano. 2022. "Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers" International Journal of Environmental Research and Public Health 19, no. 10: 6057. https://doi.org/10.3390/ijerph19106057