A phenomenological study detailing the experiences with inclusive education in the Czech Republic for the pupil with congenital heart disease and acquired brain injury and his mother

Abstract

Legislative changes in the Czech Republic in 2016 created more favorable conditions for inclusive education of learners with acquired brain injury. Due to the scarcity of domestic and international evidence (only three studies) focused on this topic, this study aimed to understand the educational experience of a learner with a heart transplantation followed by acquired brain injury and his mother. The data analysis was conducted using phenomenological methodology by van Manen, along with thematic analysis. Six themes were identified in the mother’s responses and five in the pupil’s. This case study provided valuable insights into potential barriers in inclusive education that hindered the pupil’s learning and led to additional challenges in his social participation. This vulnerable population of students and their families require more protective educational policies, as their experiences may be significantly affected by the ongoing frailty of the pupils’ health.

Keywords:

• pupil with congenital heart disease/heart transplantation
• apallic syndrome/acquired brain injury
• special educational needs
• inclusive education
• mother
• experience

PUBLIC INTEREST STATEMENT

This study explored how the learner with transplanted heart and acquired brain injury and his mother experienced education in an inclusive environment in the Czech Republic. The participants valued high the inclusive education, however they had to face different barriers, e.g., lack of empathy and understanding from teachers, lack of resources, challenges in relationships with peers or underestimating the consequences of the hidden disability from teachers. To overcome some of the problems the mother started to work at the school as a teacher´s assistant and they developed various strategies in the course of time. However, education in the inclusive environment would be probably seriously challenged without a long-term effort of the mother. Some students with more serious disabilities can be disadvantaged or even excluded from inclusive education based on the insufficient services or attitudes of teachers and pedagogical staff. Therefore, this case informed us that pupils with hidden physical disabilities and illness may need higher protection of their educational needs. Understanding the experiences of this and similar families emphasizes a need for supportive approach, enabling social participation of learners with SEN and necessity to protect their rights.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/2331186X.2023.2282824.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data supporting the results of the research (the transcripts of the recordings) are stored in the author’s archive and are not accessible due to anonymity of the participants.

The researchers’ influence on the research

Both the main author (the first researcher) and the supervisor (the third researcher) are European. The first researcher has years of experience with teaching heterogeneous classes of learners at elementary and secondary school, she is also a special pedagogue. The third researcher has years of experience of teaching learners with high level of special needs (learners with physical disabilities as well as multiple disabilities) at special elementary school and is a father of a pupil with special needs. Neither the first nor the third author taught the pupil who participated in this research or taught at the school that this pupil attended. During the research, we tried to balance differences in perspectives caused by different gender, roles (teacher, parent), experiences primarily with inclusive/special school environment, etc. The second researcher is American and is specialized on the population of students with learning difficulties. His contribution to this research focused mainly on the consultation of disputed details that needed to be discussed within analysis (including sociocultural perspectives) and for preparation of and editing the manuscript.

Additional information

Funding

This research was funded by the project “Concept Evidence-Based Practice in Special Education and Arts Therapies”, Registration Number: 4541222111, Faculty of Education, Palacky University Olomouc, 2022. The research was reviewed and approved by Ethics Committee of the Faculty of Education, Palacký University in Olomouc on 2^nd April 2019 (doc. no. 6/2019), with respect to the Directive of the Dean of the Faculty of Education UP, 3S/2015. Written informed consent to participate in this study was provided by the participants and participants’ parents. Inclusion of identifiable human data in this text is in accordance with the signed informed consent.

Notes on contributors

Dagmar Sedláčková

Dagmar Sedláčková an Assistant Professor at Palacký University Olomouc, a member of Center of EBE & Arts Therapies: A JBI Affiliated Group, with experience teaching at secondary and elementary schools, specializes in conducting systematic reviews and qualitative research focused on inclusive education.

David Hampton

David Hampton, a Professor at Bowling Green State University in the USA, concentrates on two primary areas. Firstly, he investigates various forms of formative assessments to track the progress of students with disabilities. Secondly, he delves into the historical and comparative status of special education worldwide.

Jiří Kantor

Jiří Kantor, an Associate Professor at Palacký University Olomouc in the Czech Republic, is a director of Center of EBE and Arts Therapies: A JBI Affiliated Group, and co-leads GRADE for Education Group. With experience teaching students with disabilities, and a background in music therapy, his expertise lies in evidence-based, special, and inclusive education, along with music/arts therapies for individuals with SEN.