Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Perales, Ramón García; Palomares-Ruiz, Ascensión; Ordóñez-García, Lydia; García-Toledano, Eduardo

doi:10.3390/ijerph19106057

Cited by 4 publications

(7 citation statements)

References 35 publications

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“…These are fundamental aspects to be taken into consideration in teaching and learning processes. These results are in line with the conclusions from other studies on this subject [ 14 , 17 ].…”

Section: Resultssupporting

confidence: 93%

“…In education, some level of appropriate knowledge about these diseases is essential in teaching [ 16 , 17 ]. Professionals whose work is providing specific support to these students play a key role in guiding and advising other members of the teaching team, families, and social institutions that have an impact on students’ educational progress.…”

Section: Introductionmentioning

confidence: 99%

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Contextual Variables with an Impact on the Educational Inclusion of Students with Rare Diseases

Perales

Palomares-Ruiz

Zomeño

et al. 2022

IJERPH

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The context of a school may play a fundamental role in students’ academic and personal progress. In this study, we focus on two contextual variables, the school type and school location or setting. The study used a questionnaire to assess teachers’ knowledge and thoughts about rare diseases based on these variables, with the participation of 574 school teachers. To broaden the research perspective, another questionnaire was administered to members of 152 rare disease patient advocacy groups to ask about their participation in educational processes and analyse their results according to one of the contextual variables: the setting or location of each association. The results indicated statistically significant differences according to the variables examined, which were larger for the type of school variable. In short, numerous variables that influence the teaching and learning processes need to be considered in educational praxis; in this study, we looked at those of a contextual nature (for example, the geographic characteristics of schools and associations), and this is essential for increasingly heterogeneous educational locations that demand multidimensional approaches.

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Section: Resultssupporting

confidence: 93%

Section: Introductionmentioning

confidence: 99%

Contextual Variables with an Impact on the Educational Inclusion of Students with Rare Diseases

Perales

Palomares-Ruiz

Zomeño

et al. 2022

IJERPH

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“…In the educational field, inclusive practices are essential for schoolchildren with rare diseases, in order to increase their integration and quality of life (González and González, 2021;Wasilewska et al, 2022). This struggle to support and defend their quality of life is the objective of many national and international From the teaching perspective, teachers cannot tailor education solely from their professional experience; that must be complemented with specific training and close coordination with families and services outside the school, such as healthcare or patient support groups (García-Perales et al, 2022;Thombs et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

“…This struggle to support and defend their quality of life is the objective of many national and international institutions ( Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras, 2022 ; Federación Española de Enfermedades Raras, 2022 ; Orphanet, 2022 ) that spread information and make suggestions to promote inclusion in the educational field. From the teaching perspective, teachers cannot tailor education solely from their professional experience; that must be complemented with specific training and close coordination with families and services outside the school, such as healthcare or patient support groups ( García-Perales et al, 2022 ; Thombs et al, 2022 ).…”

Section: Discussionmentioning

confidence: 99%

“…Considering the teaching work to promote educational inclusion and in order to promote the general spread of quality inclusive educational processes for all students, in this study, we address the educational inclusion of students with rare diseases from the perspective of the teacher. This is a subject that deserves special consideration due to the scarcity of existing research ( García-Perales et al, 2022 ).…”

Section: Introductionmentioning

confidence: 99%

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The influence of teaching variables in the educational processes of students with rare diseases

et al. 2023

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IntroductionTeachers have a key role in their students’ educational inclusion processes. Numerous variables influence their professional work and determine how they approach teaching.MethodsIn this study, 574 teachers teaching non-university educational stages in the Autonomous Community of Castilla-La Mancha were queried about their knowledge and perceptions regarding students with rare diseases, examining the extent to which there were personal variables that could have an impact on that.ResultsThe results indicate the need to expand training to increase levels of knowledge in the educational arena about rare diseases, especially about how they are conceptually described and their categorization and prevalence. All of the teaching variables evaluated were statistically significant, with p < 0.001 in most of the elements evaluated according to each of the following variables: sex, age, job position, teaching experience, and higher qualifications. This shows that there are teaching variables that influence the inclusion of students with rare diseases. Being aware of them should be a priority in order to increase teacher empowerment for the delivery of inclusive educational processes.DiscussionAll students exhibit distinctive characteristics and teachers play an essential role in offering them quality individualized education. The full inclusion of all students is something educational systems have yet to achieve, and this study aimed to contribute to that goal, in this case for schoolchildren with rare diseases.

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A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease

Al-Attar,

Butterworth,

McKay

2024

Orphanet J Rare Dis

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Background The ‘diagnostic odyssey’ is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of ‘red flags’ that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. Results Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. Conclusions This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients’ history and experiences with healthcare providers. These findings could be used to develop a clinical decision‑making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the ‘diagnostic odyssey’ and improve the patient experience.

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Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Cited by 4 publications

References 35 publications

Contextual Variables with an Impact on the Educational Inclusion of Students with Rare Diseases

Contextual Variables with an Impact on the Educational Inclusion of Students with Rare Diseases

The influence of teaching variables in the educational processes of students with rare diseases

A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease

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