Introduction

Rare diseases (RD) are concentrated in a very small sector of the population, thus the educative reality presented by those affected is hardly approached by the administrations.

According to ^{Aguirre (2008}), the educational needs that this type of students normally share are those related to: personal autonomy, sensory motor limitations, accessibility to the physical and social environment, communication and language, psychomotor rehabilitation, construction of self-image and finally those that affect the development of cognitive abilities.

In reference to the academic context, Monzón et al. (2017) concluded that subjects that require significant intellectual or physical effort such as mathematics and physical education are, generally, the most difficult subjects to follow for students with some RD.

The cognitive processes that take place during mathematical reasoning are equivalent to those that are part of the programming field. Students start from a challenge to overcome, which involves a process of reflection, trial-error and analysis. These processes are part of the computational thinking (CT).

The CT is a discipline that includes the set of thought processes that are involved in the formulation of a problem and in the expression of its solution, so that it can be carried out efficiently and correctly, contributing to the development of the abstract thinking, hence this kind of thinking in students becomes a key piece to take on challenges that education implies in the 21st century (^{WING, 2006}, p.33).

Student's ability to think computationally will be responsible for selecting the correct options and steps to follow in order to overcome the challenge that is presented to them. Thus, the CT acquires more and more importance in a society in constant technological evolution, where the school must adapt its teaching methods to the new labor and social demands.

Nowadays, within the educational field, the technological discipline focused on the use of hardware best known for the treatment of the CT is educational robotics.

Educational robotics is a didactic approach that can be easily integrated into different educational environments, in which through the use of programmable robotic devices, and the application of project-based learning methodologies, they can improve the knowledge acquisition process of students , allowing at the same time to become familiar with ICT and use them to define a plan, organize and find a solution to a specific problem through research and experimentation (^{MISIRLI & KOMIS, 2014}, p.99).

Teachers need information about RD and ^{Alfaro & Negre (2019}) deepen in this aspect, they carried out an analysis of the information needs presented by teachers regarding the educational care of students with rare diseases in Early Childhood and Primary Education centers of the Balearic Islands. Based on the results of the analysis, the participating teachers consider that they would be able to improve curricular competencies through educational interventions, which indicates a certain confidence in themselves, in other teachers and in the students with RD to improve their skills and competences. Even so, they recognize that the training they have is not enough, confirming the need to announce the educational needs of students with RD.

The context selected for the research is the INèDITHOS⁶ association, which provides a volunteer service in Mallorca (Spain). INèDITHOS (Research and Intervention for Educational and Technological Inclusion in Hospital Pedagogy) is a university volunteer project aimed at offering psycho-pedagogical care to children and young people who suffer from serious diseases, chronic in general, and, specially, known as rare diseases (RD) or infrequent diseases (VERGER; ^{NEGRE, 2019}). On the other hand, it aims to be a space open to collaboration with researchers to raise awareness about the needs of these children and young people. The association works in three intervention lines: Psychopedagogical care in the Pediatric Semicritic Unit of the Son Espases Hospital, the Pediatric Palliative Cures Unit of the Son Espases Hospital and finally, Home Educational Support, in which the research will be focused.

Through the learning-service methodology, INèDITHOS aim to combine service to the community and learning processes in a unique project in which the participants learn while they work on the real needs of the environment with the intent to improve it.

The main goal set for the research is to identify the characteristics that a didactic strategy must have to promote CT in children and young people with rare diseases that receive support from the INèDITHOS association.

This project is framed in the investigation project EDU2016- 79402-R (MINECO/ACI/FEDER/EU) “Educational solutions for the improvement of the quality of life of de child with a rare disease from an innovative and transdisciplinary intervention” and is part of an action of the project “INèDITnet: Network for the implementation of the Learning-Service (ApS) methodology in the field of Hospital Pedagogy in University Training” of the Institute for Educational Research and Innovation (IRIE) of the University of the Balearic Islands (UIB).

Methodology

The investigation has a mixed approach because it requires de use of techniques located in both the qualitative and quantitative framework. As it is a minority context and, with the intention of creating a theoretical support that can be useful in similar situations, it will be carried out through design-based research (DBR) based on different case studies. The case study approach, according to Ceballos-Herrera (2009), belongs to the qualitative interpretive paradigm, which considers that reality is constructed by the people involved in the situation under study, and although the context of each one is personal, the constructions have points in common.

Within this methodology, it has been decided to use the IPECC project management model (Initiate, Plan, Execute, Control and Close) as an implementation method (^{LYNCH; ROECKER, 2007}). This model offers the advantage of allowing, thanks to the iterative possibilities it enables, a continuous re-evaluation of the results to guarantee a quality result, allowing the introduction of changes based on the data obtained, as well as improvements.

The role of the researcher will be to design a didactic strategy formed by a virtual environment to promote the digital skills of the volunteer team and educational proposals for each of the participants with the intention of enhancing their CT, adapting to their needs and characteristics.

Case selection

The project will be carried out within the framework of different case studies with an N=3, each of them with ages corresponding to the Secondary Education stage. In addition, none of them present the same diagnosis, so their educational needs and their own characteristics should be attended in a personalized way.

They will then briefly introduce themselves to each of the young people. For reasons of anonymity they will be identified with a code and not with their full name. The information on each of the pathologies has been extracted from the list⁷ of diseases offered by the Spanish Federation of Rare Diseases (FEDER), which aims to make people who suffer from a rare disease visible.

Regarding the lack of diagnosis presented by one of the participants, it should be noted that it is a very common problem within the field of RD. The delay in diagnosis means that the different needs presented by these people cannot be covered until they have a specific roadmap. Therefore, the less time it takes to diagnose a case, the less it will take to adopt the necessary measures to improve their quality of life.

Research phases

The investigation is going to take place through a project management model known as IPECC (Initiate, Plan, Execute, Control and Close), continuing with the investigation process framed in an investigation project based in design.

Source: Own elaboration based on ^{Lynch and Roecker (2007}).

FIGURE 1: Phases IPECC. 

The IPECC model allows to repeat the cycles needed until the quality control is approved and the close phase can begin. Thus, starting from the scheme presented above, we proceed to explain each of the phases of the project:

Tools used

Next, the instruments used to obtain and analyze information will be exposed, explaining in turn the necessary adaptations that have been made for its application in the context of volunteering in the association. In order to reach the volunteer team, the questionnaires have been sent through the Google Forms platform.

Educational robotics resources used

The resources that will be part of the didactic strategy and the virtual training space have been selected from those that are accessible to the association or are already part of its property, among which are: Scratch, mBot, Sphero ball mini, Hour of Code, Edison, Lego BOOST, Makey Makey and Megamaker Kit.

Results and Discussion

For the design of the didactic strategy, the results that each volunteer gave on the young person who volunteered weekly at home were collected through the Primary Education teacher's perception questionnaire on competency-based student learning (^{MEROÑOL et al., 2016}), adapted to Secondary Education.

Once the general competencies, characteristics¹⁰ and hobbies of the three young people have been assimilated, the didactic proposal for each of them is presented. Each proposal consists of five sessions designed to be carried out with a temporality close to forty minutes, adapting to the normative duration of the volunteer activity (hour and a half) and to the electronic devices available to the young person.

In the second session, he will carry out, like the previous participant, the proposal Not all robots have the same shape. The third session Dodge the obstacles will allow Jo to create a path on the ground with objects from his surroundings to avoid obstacles by programming the Edison robot. In the fourth session Controlling the traffic, some components of the Megamaker Kit will be used to create and program a traffic light, following a series of instructions proposed on the Ebotics website. Finally, in the last Learning to Drive session will combine the last two activities by programming Edison to stop when the light is red and move forward when it is green.

For the design of the virtual training space focused on the use of CT resources, were used the results that the 16 volunteers showed in the three dimensions of the ICT Competency Questionnaire for teachers of different educational levels (de la IGLESIA; FERNÁNDEZ; CEBRERIRO, 2016).

Source: Own elaboration.

GRAPH 1: Results of the dimension "Technical use of ICT". 

Source: Own elaboration.

GRAPH 2: Results of the dimension "Didactic use of ICT". 

Source: Own elaboration.

GRAPH 3: Results of the dimension "Media design through ICT". 

Once the data from the first section has been collected, it is observed that in all the items there is at least one volunteer who feels that she is not competent at all regarding the use of ICT. Similarly, all the questions have a higher percentage of responses above the average score (3), so it will be positive for the implementation of the virtual space. The indicators in the second graph show a more regular trend than in the previous case. In a resounding way, the volunteers in general feel competent in the use of ICT for educational purposes. In this way, the use of educational robotics is not perceived as problematic if it is accompanied by adequate virtual training.

Finally, in the third and last section that will be presented below, there is a large number of items in which there are two volunteers who do not feel capable, in some cases reaching more than a third of participants who perceive themselves as nothing competent. As some of these items imply the use of software as a teaching tool, it will be considered when defining them in the virtual space, offering tutorials and documentation that help facilitate the implementation of this kind of resources.

The design and development of the virtual training space has been carried out using the Moodle platform, taking into account the results shown above. Therefore, taking into account the needs of the volunteers regarding the use of educational software for didactic purposes, it has been ensured that the implementation of virtual resources is explained in the most detailed and accessible way possible.

Thus, we proceed to present the virtual training space focused on Secondary Education consisting of four sections (Resources and sessions, General space, Tutorials and Extension). Thus, in the image the sections are listed to explain them later.

Source: Own elaboration.

FIGURE 2: Components of the "Resources and sessions" block. 

Source: Own elaboration.

FIGURE 3: Components of the "General Space" block. 

The General Space section is made up of the following elements:

As part of the control phase of the IPECC cycle, the virtual training space was evaluated by the 16 members that make up the volunteer team of the INèDITHOS association, of which 13 responded. Through the application of the Questionnaire to evaluate the quality of a learning management system (^{López, I. L. et al., 2018}), the necessary data was obtained to implement changes that respond to the needs presented by the users.

Source: Own elaboration.

GRAPH 4: Results of the dimension “Frequency of use of the system”. 

Source: Own elaboration.

GRAPH 5: Results of the dimension "Quality of the virtual space". 

Source: Own elaboration

GRAPH 6: Results of the dimension "Global evaluation of the system". 

The results show a very positive assessment in all aspects, however, the indicators that refer to communication through the environment (5, 6 and 7) are more affected because the volunteers have the telephone number of their companions and they have priority for using instant messaging systems like WhatsApp. The second graph, as in the first, shows how the volunteers believe that they have a quality environment. In the case of indicator 21, there were doubts due to a misunderstanding that the volunteers reported once the questionnaire had been sent, since they were not aware that the high rating suggests that the platform has navigation problems.

In the third graph, the assessment of the volunteers regarding the quality of the virtual space is more than satisfactory in the four indicators. Therefore, taking into account the three dimensions analyzed, it can be affirmed that the training environment obtains a positive validation from the users. On the other hand, the comments that the volunteers included in the questionnaire have been taken into account when modifying the space as part of the IPECC cycle. The changes introduced refer to download errors of some files that have been repaired today, and a lack of understanding of some elements that have been minimized by adding a brief description visible in the main menu.

Thus, the design and development of the virtual CT-based training environment for the INèDITHOS association is concluded. The questionnaire used for the evaluation of the space (^{López, Zapata, Briceño and Poot, 2018}) will be left permanently for future modifications. Finally, a contact email will be attached for any problem that may arise in the space.

Conclusion

The objective of this article was to identify the characteristics that a didactic strategy must have to promote the CP of young people with RD from the INèDITHOS association. Consequently, a series of aspects have to be considered when designing and implementing the sessions.

The proposed activities must be based on hobbies and tastes of the young person to whom they are directed. For this, it will be essential that the volunteer who carries out the activities with each of them is the same one who goes to the home weekly to provide the volunteer service. In the event that it was an unknown person, the lack of connection could affect the development of the proposal due to a possible discomfort of the young person.

When designing a proposal, the volunteer must detect the general competencies of the young child, as well as the educational needs that they present in any field beyond mathematics. Once the general competencies are known, the key characteristics of the suffered disease should be understood, since when designing a didactic proposal it will be necessary to take into account to what extent the disease implies some limitation at a motor and cognitive level.

Regardless of whether the child or youth is in school or not, one should avoid confusing biological age with cognitive age. It is common to find occasions where the difference between these two ages is greater than five years. In these cases, the biological age is nothing more than a label, so the initial degree of difficulty of the didactic strategy will be established based on their knowledge and not based on the biological age or course to which it belongs. Thus, the degree of difficulty of the sessions must always be increasing, so it is advisable to assiduously reinforce previously worked concepts, trying to get the child or young person to verbalize the steps they take during the activity process for better internalization.

Sessions must strike a balance between duration and effectiveness. An activity of excessive duration, even if it is made up of different resources, concepts and interventions on the part of the child, can be counterproductive due to the mental exhaustion it entails. Therefore, a short-term proposal that is flexible to be lengthened in the event that the interest of the child stands to will always be prioritized.

The volunteers must have at their disposal a virtual space to go to in order to train themselves in order to prepare and / or implement a didactic strategy. A visually attractive and tidy space where you will find resources that you can include in the proposals and ideas of how to implement them in the context of the association, in a clear way that encourages their use. The presentation of the resources and activities greatly influence the predisposition to carry them out, so the volunteer must guarantee an attractive introduction of the proposal for the young person. In turn, in case of doubt between a physical resource and a virtual one, priority will always be given to the physical one (as long as the child or young person can establish contact with it). The fact of physically interacting with the material stimulates action and the sense of touch, something that virtual resources do not offer.