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.

1. Introduction

Changes in education policy in the Czech Republic in 2016 have strengthened the position of inclusive education and made it one of the priority topics in the further development of the Czech educational system (Ministry of Education, Youth and Sports: MŠMT, 2018). As in other countries, changes related to the transition to an inclusive model of education have begun to take effect. This transition should bring a gradual change in the attitudes of people in society (Guillemot et al., 2022). Diversity has been becoming an integral part of our life experiences and the attitudes towards disability at the social and cultural level have been changing (Schuelka & Johnstone, 2012). Changes in legislation, the improvement of services, and respect for the rights of people with disabilities are required (Marinelli & Dell Orto, 1999, p.1).

A number of authors have dealt with various aspects of inclusive education so far, e.g., with the quality of life, academic success and overall development of these learners (Dalgaard et al., 2022; Linertová et al., 2019; Pather, 2011) or with their involvement in the curriculum (Rybová & Kudláček, 2013). However, there is only a limited number of qualitative studies that are directly focused on the lived experience of learners with disabilities or their parents with inclusive education (Sedláčková et al., 2021). Examples of these studies are available for learners with multiple disabilities (Ryndak et al., 2014), developmental disabilities (Cologon, 2020), autism (McLaren, 2013; Tso & Strnadová, 2017), with visual impairment (Barbieri et al., 2019; Brusegaard, 2018), Hirschprung disease (Cavet, 2003), etc.

Experiences described from the perspective of pupils with different types of physical disability were explored by Shevlin et al. (2002), Curtin and Clarke (2007), or Lemos (2016). Additionally, there are studies focused on parents having a child with cerebral palsy (Krastina et al., 2006; Rogers, 2007) or multiple disabilities (Hopey, 2008). Concerning participants with some less frequent diagnoses, such as acquired brain injury (ABI), there is mainly quantitative evidence, e.g., studies that deal with training coordinators (Bennett et al., 2022; Howe & Ball, 2017), educators’ perspectives (Bate et al., 2021), disparities in service provision (Riccardi & Lundine, 2022), academic performance, and educational needs (Mychjalkiw, 2004) or reintegration educational challenges (Clark, 1996). However, policy recommendations should also consider the experiences of the users (in the context of inclusive education, the experiences of students/learners and their parents), which is typically examined via qualitative research through phenomenological methods (such as van Manen’s methodology). Qualitative research evidence is very limited (Bate et al., 2021; De Villiers, 2015a; Sedláčková et al., 2022b; Tran, 2014) as found out by a recent search in databases (Appendix A). Moreover, there is no evidence concerning the combination of ABI with some serious chronic illnesses, e.g., congenital heart disease (CHD), or ABI caused by apallic syndrome. Therefore, the aim of this study was to gain a better understanding of the educational experiences of these vulnerable students and their families through a phenomenological study emphasizing first-hand narratives that could inform policymakers, teachers, and other school staff about the educational needs of this vulnerable population.

1.2. The Czech educational context

Political changes in the Czech Republic in the last decade of the 20th century affected the development of education. School integration started at the beginning of the 1990s, and in 2004, the new School Act was approved. This opened the way to much more essential changes that led to a final establishment of inclusive education as the most preferred educational form for pupils with special educational needs (SEN), with the approval of the School Act Amendment in 2016. However, special schools were not abolished, similarly to the situation in Germany, France, or the United Kingdom (Linertová et al., 2019). There has still been a dual system in the Czech Republic that enables the education of learners with SEN (according to its severity and extent) in typical schools, with the help of support measures, or in special schools, which are specialized according to the types of pupils’ disabilities. Their role in the education of pupils with SEN has been reduced mainly to education of students with severe forms of SEN.

In the Czech environment, inclusive education is based on a system of supportive measures, including accommodations of educational methods, form, and usage of assistive technologies, among others. Counseling services play a vital role in this system and are provided directly by schools (e.g., by a school psychologist, special teachers, etc.) or by school counselling centers. Despite numerous successes, the transition to inclusive education has been accompanied by challenges that persist seven years after the issuance of the School Act (Růžička et al., 2020). These challenges are related to a lack of expertise of pedagogical staff in special education, unsupportive attitudes towards pupils’ special needs, and other issues typical not only in the Czech educational system (Harokova & Chrastina, 2022; Sedláčková & Kantor, 2022a), but also abroad (Olusodo & Farrow, 2021; Rojo-Ramos et al., 2021). To enhance the system, gathering more research evidence from pupils and their families could be invaluable, especially concerning understudied types of special needs, such as acquired brain injury.

Also, alternative schools, where tuition is paid, are included into the Czech educational system and some students with SEN are educated there (Pospíšilová, 2013). Waldorf schools are a typical example of these schools. They were founded in 1919 by Rudolf Steiner in Germany and focus on the pupils’ self-determination and holistic development, while the teachers provide guidance for it. The curriculum is based on the understanding the development of the child, using methods like storytelling and arts-based education. The assessment is more individualized and based on observation than in mainstream schools (Aljabreen, 2020; Kranich, 2000).

2. Methods

This qualitative study was based on the philosophical frameworks of phenomenology and hermeneutics. We employed van Manen’s analysis of lived experience (Van Mannen, 2016) along with a thematic analysis (for further details, see the sub-section titled “Data Analysis”), a method previously utilized in other studies (e.g., Forteza et al., 2019; Sedláčková et al., 2022a, b, etc.).

The following research questions were identified:

• How did the pupil with congenital heart disease and with acquired brain injury experience education in an inclusive school environment in the Czech Republic?

• What experience with inclusive education did the mother of this pupil have?

Van Manen’s analysis of lived experience (Van Mannen, 2016) is a method that enables a deep understanding of how the participants experience inclusive education, and how the education of the learner with serious disease and several limitations in an inclusive environment affects the life of the pupil and his family (Van Mannen, 2016). The analysis of lived experience helps us to understand the experiences of the participated individuals in a broader context than only the knowledge of the facts; it enables us to determine the subjective significance of their experiences (Van Mannen, 2016). The pupil and the parent perceived and experienced individual events in a different way, so a detailed analysis was performed in both cases for each participant separately, and only in retrospect, connections pointing to overarching themes were found and differences between individual themes of each of them were defined.

The research was conducted during 2021 – 2022. It was approved by the Ethics Committee of the Faculty of Education, Palacký University in Olomouc (doc. no. 6/2019). The pupil and his mother signed an informed consent as an agreement to their participation in this study, as well as with providing data and publishing them, provided anonymity was respected.

2.1. The characteristics of the participants

The subject of the research in this study was the mother of a pupil with CHD and ABI and the pupil himself. The pupil attends an inclusive primary school of Waldorf-type in a medium-sized Czech town. The school is in an older building, which is almost barrier-free.

The first contact with the pupil’s mother was done by telephone, followed by details of the research sent by email. She was asked for cooperation and informed about the research goals and conditions related to the research process. Detailed information about the participants with family data is stated in Table 1.

Table 1. Detailed information about the participants with family data

The parent, number of interviews	the mother, 2
The pupil with SEN—gender, pseudonym, age in the time of the interview, number of interviews	male, Jirka, 14, 1
Siblings—pseudonym, gender, age, SEN, school, family background	a younger brother, Jack, male, 12, without SEN, traditional elementary school a complete family—a mother, a father, two sons; living in a flat of the four-flat house with a garden in the centre of a middle-sized town
The type of the school, support measures	elementary school—Waldorf school − 7th grade
The type of disability, the level of functional abilities	congenital malformation: congenital heart disease (hereditary burden)—necessary heart transplantation in early childhood—therefore medication by immunosuppressants; reduced immunity acquired brain involvement after cardiac arrest at the age of 4 (5 min loss of vital functions)—diagnosed Apallic syndrome resulting in brain damage—impairment of gross and fine motor skills, difficulty in writing (right hand), specific learning disabilities—dg. dyscalculia, problem with short-term memory, long-term memory—problem with generalization of acquired knowledge and its integration into the system

SEN—special educational needs.

The family experienced several life periods when survival of the pupil was the only priority, e.g., at a time when the boy was diagnosed with a serious heart disease and a heart transplant was necessary. Since overcoming the major surgery, he has had to take immunosuppressants; therefore, his parents have been afraid of any infection (e.g., during the COVID-19 time, all the family stayed at home and cut contact with the outside environment that made it very difficult for us to get in touch with them). At the age of four, he suffered a few minutes of cardiac arrest and was diagnosed with Apallic Syndrome (AS), wherein the brain damage influences his cognitive functions and motor skills. His school performance and learning outcomes were significantly influenced by the health complications, huge school absence, and the consequences of AS, such as learning disabilities and motor limitations.

2.2. Data collection

The data collection was performed via autobiographically oriented qualitative semi-structured interviews with the pupil with CHD and his mother (Cresswell, 2018). To gain the demographic data, we used the brief questionnaire with the mother of the pupil and the pupil’s school documentation was used as another data source.

The interviews took place at participants’ home. The semi-structured interviews were based on pre-defined thematic areas (see Appendix B). With the consent of the participants, the interviews were recorded electronically, through a mobile phone using Dictaphone (Dictaphone application, version 1.8.0, ALON Software Ltd.). In the beginning, the participants were invited to freely narrate the course of pupil’s education from pre-school education to the present. The interviewees were given sufficient space for reflection or recollection, the interviewer expressed understanding during the interview, and, in the event of a greater deviation from the topic, sensitively guided the participants back to the required subject area or supported them to provide more details. In the end, they had an opportunity to comment on the question of the future and were given space to supplement their narration with anything they still considered important. Two interviews with the mother lasted about 45 minutes each and one interview with the pupil took about 35 minutes. The data gained from the school documentation informed us about the pupil’s SEN and the support measures.

2.3. Data analyses

The data were processed in several steps, following van Manen’s approach (Van Mannen, 2016) with thematic analysis, using the NVivo 14 software (Lumivero, 2020), for qualitative data analysis. The methodological procedure of van Manen’s analysis (2016) comprises six phases, which do not necessarily occur in the suggested order and some of them run concurrently. After formulating the research question (the first step) and exploring the participants’ lived experiences through in-depth interviews (the second step), verbatim transcriptions of the recordings were performed using the Pages software. However, for the sake of clarity, some of the statements quoted in the text below have been sensitively modified in certain places without altering the meaning and essence of the message.

We did not use any transcription software and took advantage of the transcript process that facilitated the subsequent analysis of the data by getting familiar in detail with the content of each interview (Patton, 2002). The second step was done by the first author.

Then, we conducted the thematic analysis with an emphasis on identifying key themes for the phenomenon. This step involved a detailed reading of the transcribed text by the first and third authors, with the effort to determine which statements best described the nature of the phenomenon. We utilized qualitative analysis software NVivo 14 (Lumivero, 2020), to identify the themes. Initially, we imported the files containing the participants’ statements into the software. For both cases (the mother and the pupil), we identified codes based on individual participants’ references. To enhance clarity in the text, we employed color coding before organizing the statements in the Code panel (Terry et al., 2017). In the end, 17 main codes were used for the mother, and 12 for the pupil. This was followed by the identification of individual themes, whereas the thematic base gradually expanded during the analysis, incorporating a growing number of emerging themes and sub-themes. More specified sub-themes were grouped under broader themes. To prevent potential bias, we worked independently and then collaboratively on the coding process. We carefully considered appropriate definitions of themes emerging from participants’ statements. Upon completing the analysis, we compared, discussed, and adjusted our individual results to attain the most objective perspective and to capture the main meanings. Although some themes in both cases were interconnected, they are presented separately in the Result section for each case, reflecting the distinct experiences and perspectives of the individual participants.

The last three steps, according to Van Mannen (2016), occurred simultaneously with the common goal of organizing the findings and defining the key phrases that helped to create the narrative, characterizing the story. These steps were as follows: (4) we described the re-searched phenomenon to make visible the thoughts, feelings, and attitudes of the research participants, (5) we maintained focus on the research question throughout the research, and (6) we considered the ratio of the overall results in relation to the importance played by the individual parts in the overall structure (Van Mannen, 2016). Using van Manen’s framework, we could draw on a unique perspective derived from personal experience, which was then acknowledged and reflected upon in relation to all phases of data collection, analysis, and interpretation.

3. Research results

3.1. Results: the mother

The themes identified in the mother of a pupil with CHD were (1) what helps, (2) decision-making, (3) barriers and worries, (4) contentment and well-being of the child, (5) a satisfaction with inclusive education, and (6) relationships with peers. The sub-topics that were defined within each topic are summarized in Table 2. The overview of the results is placed in Figure 1.

Figure 1. The overview of the presence of the mother’s and student’s main themes (according to the number of sub-themes).

A bar graph shows the distribution of themes in the case of the mother and the learner. In the mother´s case predominated topics associated with themes what helps and barriers and worries, which also appeared in the learner´s case, but to a lesser extent. The theme participation was perceived with similar extent in both of them, as well as relationships. The issue of decision making appeared only in mother´s and the theme of future only in learner´s case.

Table 2. The presence of themes and sub-themes in a pupil with congenital heart disease and his mother

Categories/main themes	themes/sub-themes	Mother	Pupil
What helps	cooperation with teachers—agreement with everyone	✓
	specialist’s help—psychologist - therapy	✓
	respecting the special needs of the pupil	✓
	mother working as a teacher’s assistant AP	✓
	cooperation with counseling	✓
	individual education plan and support measures	✓
	exceptional teachers	✓
	family support—relationship with a younger brother	✓
	individual approach and support		✓
	mother’s help		✓
	striving for the highest possible level of participation	✓	+
Decision making	sharing experience with parents of children with SEN	✓
	specialist’s help—psychologist	✓
	benefits of inclusive education	✓
	problem solving	✓
Barriers and worries	limited participation	✓
	misunderstanding and lack of empathy in some teachers	✓
	trivialization of the pupil’s special needs	✓
	hidden disability	✓
	organizational problems	✓
	frequent absences = missed curriculum and limited relationships with peers	✓
	the pupil’s effort not to be different	✓
	adaptation	✓
	difficulties associated with the school		✓
	reduced participation—health limits	✓	+
Contentment and well-being of the child	do not overburden	✓
	to be happy at school	✓
	focus on presence	✓
Participation of the pupil	striving for the highest possible level of participation	+	✓
	reduced participation—health limits	+	✓
A satisfaction with inclusive education	Waldorf—ideal conditions (assessment, philosophy, number of pupils)	✓
	“normal life at normal school”	✓
	joint education with a younger brother	✓
relationships with peers	lack of friends (frequent and long absence)—bullying schoolmates = getting a friend	✓
	commuting to school	✓
Relationships with peers and teachers	friends		✓
	friendly teachers		✓
The future	challenges		✓
	career		✓

+ − included in different theme of another participant.

3.1.1 What helps

The mother of the pupil with CHD was convinced of the benefits of inclusive education and mentioned several factors that she considered essential for successful and functioning school inclusion. Respect for the SEN of the pupil, the use of an individual educational plan (IEP), and other support measures are among the most important ones. To make this possible in practice, she considered parent-teacher cooperation to be the key factor, wherein even in difficult situations when something does not work perfectly on the teacher’s side, there is always a solution (the sub-theme of cooperation with teachers): “ … . I, as a parent, have to explain constantly to someone how he is doing, what to look out for, what to look after.” “And I always go to that teacher and say, ‘You’re asking him about hydrocarbons here, but before that you taught him basic alkanes, so he can name the basic alkanes, but when you write in the test basic hydrocarbons, he doesn’t know what it is.” In connection with communication with teachers, she considered a great advantage the fact that she worked in the same school which her son attended as a teaching assistant.

As a part of the support, the mother appreciated the family’s cooperation with Educational and Psychological Counselling (EPC). But the most important professional support was attributed to the child psychologist, who has been helping the family since the son was three years of age, by both working directly with the pupil and with his parents: ”We have an excellent psychologist; we have been visiting her since he was about three years old, because … in short, the doctors made some mistake, they did something that was very catastrophic for Jirka … and she basically prepared him to be able to get into the normal elementary school. And she’s been guiding us all the time. Jirka also attends group therapy, where he actually learns how to solve various problems, how to integrate socially and so on, and she does it in a really friendly way”.

The student’s mother spoke with gratitude about the first teacher in primary school, who was very helpful. Due to the pupil’s high absence, she was willing to devote her spare time to him (the sub-theme exceptional teachers): “Jirka went to the first, second and third grade to [the name of the village] to the primary school. Small classes, few children, it was great there. In the first and second grade, he had a teacher who was absolutely amazing, and since Jirka was a kind of a hospital child and had 500 lessons absence, I taught him a lot of the time, most of his education took place at home, and [the teacher] used to come to see him, so as to not lose the contact with him.”

As a part of her son’s support both at home and at school, the pupil’s mother greatly appreciated the loving relationship between Jirka and his younger brother Jack. She recalled how the younger brother helped and supported him already during preschool education: “ … I only found something out in retrospect from the kindergarten teacher, she told me ‘you had your Jack so well trained’ and I said ‘how do you mean that’? And she said, ‘We went out, he was the first one dressed and then dressed up his brother,’ and I say, ‘You are kidding, aren’t you!’ Jirka could go to that kindergarten one day a week, because Jack was there. It must have been hell for those teachers, I admit, because Jirka was like an uncontrollable bullet. She told me, for example, we were walking around the road and Jack held him with both hands, he smaller and weaker, so that he would not go somewhere on the road, so … ” “ … and they really love each other, very much.”

3.1.2. Decision making

The topic of decision-making was mainly related to the choice of a suitable school. In both pre-school and primary school, the parents carefully considered the ideal choice, and once again, working with a child psychologist helped them significantly. At the beginning of primary education, they were looking for a suitable school with a small number of pupils to provide their son with a safe environment, with respect to his health condition. Another important step in decision-making was solving problems that complicated their son’s education, such as troubles with a new class teacher, or bullying: “They got another teacher, he was a bit healthier that time, he went to that school more often, and she, even though she was very hard-working, didn’t respect his individual plan at all. She said “yes, of course, he doesn’t have to do all gap-fill,” and then she signed red everything he didn’t finish. So, I told her that he didn’t have to do it all, according to his plan, but she replied “No, no, I want him to do all of that”. First, she promised everything, everything was possible, but in the end it didn’t happen.

The choice of school was also influenced by sharing the experiences with other parents of children with disabilities: “Then, I met one mother in the aqua park, and she told me about the Waldorf school, so I moved him there, so he’s been attending Waldorf school since the fourth grade. He had a very difficult start there because he didn’t want to go to another school, he was satisfied in the previous one, but I moved him because there was a problem with the teacher, and there was also bullying. Jirka had a friend there, who bullied other children.” The mother’s beliefs about the benefits of inclusive education were another important factor in the parents’ decision-making; therefore, she did not consider a special environment at all: “I am definitely in favor of inclusion. I’m glad he’s in a traditional school, he made a great progress thanks to being there, and even the doctor always stressed “into ‘normal’ school, inclusion is good, choose a small school”, because he has health problems, he takes immunosuppression, so we can’t risk germs and such things, so I think this helped him a lot.”

3.1.3. Barriers and worries

The mother’s worries were related to her son’s reduced immunity and were associated with fears related to the son’s future and her stressed focus on his present life (3.1.4). The issue of barriers was associated with the sub-themes of limited participation, which was related mainly to the limitations resulting from the pupil’s frequent absence from school and his reduced immunity. This led to reduced establishing and maintaining of friendly relations with peers, missing many lessons and curriculum content, and in addition, the pupil was sometimes unable to attend joint school and extracurricular events such as trips, ski course, etc.: ”He didn’t go to ski training, and he took it really hard. But they always tried their best to help us at that school.” Where possible, he was accompanied by his mother as an assistant for medication and medical supervision.

Exceptionally, especially at primary school, they encountered a lack of understanding and empathy in some teachers. It reduced the pupil’s motivation to learn and led to feelings of frustration and disappointment: “…he had a neurological problem, his hand twitched here and there, and he just wrote a bit under the line, … and she [the teacher] underlined it all red, which was for the child absolutely disheartening … she degraded him totally by underlining it all. So, I had to explain to him that the teacher had a wrong view, because what could I do? I preferred my child to that teacher’s authority.”

His transit to another school seemed to be a solution to those problems, but he hardly got adapted to that, as was reflected in his undesirable manifestations during the first months. The new teachers applied adjustments and a tolerant approach, but sometimes they did not realize or downplayed the seriousness of his health problem. According to the mother, the reason was the hidden nature of the disability of her son: “The problem I can see is that at first glance, Jirka acts like a normal child and his special needs are then forgotten very quickly.” On the other hand, whenever the pupil had to work under the same conditions as the others, he appreciated it, even though he had worse results. It suited him not to be different from the others:” … he gains confidence when he writes the same test as the other children. He tells me “mom, I don’t have to write a different test, I have the same” and he likes it, the child’s happy. I, the parent, can see the disadvantage in that, because I say to myself: if he asked him the question differently, he might be able to answer it, and he might not have the answer there.”

Also, organizational problems related to human resources occurred in that school. The initial complications in this case eventually lead to the advantage that the pupil’s mother started working at his school: “So, I went to the director and asked him if I could be there, because there were more children who needed help, and Jirka simply needed someone to have there. He, although he didn’t like it, let me remain there that day and the next day he came to me and said that the teachers were satisfied, and asked if I could still attend the classes. So I said that it wasn’t a problem, because Jirka also calmed down significantly when I was there”

3.1.4. Contentment and well-being of the child

Due to the reduced immunity, the increased fatigue, and the health risks of the pupil, it is necessary not to overburden the pupil and to set his education and free time accordingly. In this context, his mother stated: “What is important for me is that he feels good there, he’s got those friends there and he enjoys it. And on top of that, he would learn a little there. But I don’t insist on him knowing everything at all costs, it’s by no means.” The priority for the family is to have a child that is happy at school, and due to the severity of the problems, they focus primarily on the presence: “But, because there are a lot of problems, well—we have a heart transplant and we never know what will happen within a year, what will be in two, what will be in three, so it’s as if I’m not dealing with that future life and I’m rather letting it flow freely, just let him be satisfied.”

3.1.5. A satisfaction with inclusive education

The pupil’s mother values inclusive education, whereas she can see its benefits in the boy’s maximum personality development, opportunities for building friendships and the maximum feeling of “being normal” (a sub-theme “normal life at normal school”). In this context, she appreciates the philosophy of Waldorf schools, especially because of the low number of pupils per class, the support of children’s creativity, using verbal assessment and an overall supportive approach to pupils. She perceives the difference based on a comparison with the traditional school attended by Jirka’s younger brother: “He [Jack] is not a Waldorf’s child at all—there’s a lot of activities focused on painting, on creative stuff, you know, he doesn’t like it, he likes clarity in everything. So, I can see the differences in that teaching, in that difficulty, in how strict it is: ‘you will be able to do this now, and if you don’t, it’s a bad luck’. It’s not there, at Waldorf. They really tolerate a lot, there is more freedom, the children have more space, yeah. And the mistakes are not the issue, yeah. The dictation is written not to show you what you don’t know, that’s not the case there.” During the pre-school education, the inclusive kindergarten enabled Jirka to be together with his younger brother without SEN, which also had a positive effect on Jirka’s socialization and access to the school.

3.1.6. Relationships with peers

The mother confirms that friendship is very important for Jirka. In the first grade, the frequent and long-term absence of the pupil led to limited relationships with peers, which also affected his inappropriate behavior to get a friend: “ … he had few friends, so he would do anything to make friends with anyone. So, the one told him ‘go and throw it away, give him his crayons into the toilet’ and he went and did it. Just out of gratitude to have someone.” At the current school, Jirka has plenty of friends, but due to commuting, they are in contact only at school.

3.2. Results: the pupil

The themes identified in the pupil with CHD were (1) what helps, (2) barriers, (3) the future, (4) the level of participation, and (5) relationships with peers and teachers. Under each topic, sub-topics were defined, which are summarized in Table 2. The overview of results is placed in Figure 1.

3.2.1. What helps

The pupil is aware of the important role of his mother in education. She repeatedly communicates with all the teachers and the fact that she works directly at the school and is in daily contact with individual teachers is a big advantage. He also appreciates the helpful approach of the teachers and the support measures, like the help of the teacher’s assistant, provided on the basis of the pupil’s IEP: “When I’m at school, my assistant helps me in some ways I ask her, or she sometimes writes me notes, or, not exactly the notes, in fact she copies the pages and gives them to me, … Or sometimes she dictates me some words that I can’t read, and so on.” The school support goes beyond the education in the school building, as the pupil is often allowed home teaching in the event of long-term absence. In such a situation, the teachers provide him with the necessary materials and then examine him according to agreed terms.

3.2.2. Barriers

The barriers to education were linked to various difficulties associated with school location, demands on learning, which sometimes caused stress, fatigue and lack of time, but also troubles with adaptation in the time after his transition from the mainstream to Waldorf school. The pupil stated a number of troubles, e.g., the seminar work or extensive written work, coming home late causing lack of time for leisure activities and for homework and learning, having friends at a distance, etc. These are probably common challenges that commuting students without SEN face, but together with health problems and increased fatigue, their impact tends to be more serious: “I have some troubles with our annual seminar work and its presentation at the end of the year in front of all the parents and other people who come there … ”; “commuting, it’s unpleasant, I have to get up very early, then, when I come to school, I always seem to fall asleep during the first lesson, or … as if I still need a rest … . ” “ … I had a really hard time getting used to it [Waldorf school] … but I’ve gotten used to it in those five years, or how many I’ve been there. I’m used to it there the way it is, so I wouldn’t change anything now, but it wasn’t easy.”

3.2.3. The future

The student also talked about his future, mainly about the future career and the challenge he would like to achieve: “ … I would like to learn maths, because I have a dyscalculia and I can’t count well. And then I want to be a salesman, for example, in electronics or foodstuff, I don’t care. In fact, I don’t care what I’ll do, especially important to me is to enjoy it and make good money for it. That’s it.”

3.2.4. The level of participation

The student, as well as his mother, mentioned his need to participate in activities with classmates and expressed disappointment or regret in cases he could not attend some joint class events, such as ski training or some trips, etc. To a greater extent, he tried to participate in everything his health condition allowed. He ate with his classmates in the school canteen, and he was not exempt from physical education. Only in the case of chest pain and breathing difficulty he did not do some activities, but it was up to him to regulate his own participation in individual activities or disciplines to avoid health complications. In the case of the trips, if they were not very physically demanding, his mother accompanied him as an assistant. Even though he expressed some disagreement, because his parent’s presence limited him in peer relationships and activities, he knew that he needed the supervision due to his health condition and need to take medication.

3.2.5. Relationships with peers and teachers

Good relationships at school and a healthy classroom climate contribute to the psychological well-being of pupils and to a good attitude to school and learning. His class team consisted of a small heterogeneous group of pupils, there was a good atmosphere and the pupils had friendly relations with each other: “The teachers are fine, the atmosphere there is also good. We have there a class with only a few students, ten or eleven, girls and boys, there are fewer boys … and we aren’t usually all there, but now there are all of us, and we have really good relationships, friendly, cool.” Likewise, the relationships with teachers were at a good level, the teachers were friendly and helpful, and the class teacher sometimes entertained the pupils with his sense of humor: “Sometimes it’s fun with him, our class teacher, even he behaves like a child all the time. He’s funny, he’s got crazy ideas. Now, for example, he took a friend’s scooter and rode it to … [name of the shopping center].”

4. Discussion

This study focuses on the experiences with inclusive education of a pupil with congenital heart disease and acquired brain injury, along with his mother. The narratives of the pupil and his mother overlapped in several categories, particularly in their descriptions of factors that aided during education, challenges associated with school, and the pupil’s reduced participation in relationships with others (Table 2, Figure 1). However, there were also specific themes, such as the decision-making process or the consideration of essential aspects in education from the mother’s perspective. Her experiences were significantly influenced by concerns for pupil’s health and life, periods of struggle for survival, and the persistent frailty of pupil’s health.

The family experienced inclusive education in both mainstream schools and alternative schools, specifically in a Waldorf-type setting. Kindergarten, as well as the initial years of elementary education in a traditional school, were viewed as seamless in this case, ensuring a smooth education for the boy. However, this was highly dependent on the personal traits of the teacher and her attitudes towards special needs. The parents felt deceived and hurt when the teacher broke her promise and acted even against the legislative requirements (Ministry of Education, Youth and Sports: MŠMT, 2016). In the Czech Republic, inclusive education does not have a long history, and its principles are not widely accepted by many teachers. Additionally, there are not fully effective mechanisms in place to protect the rights of pupils with SEN (Slowík et al., 2023).

The Waldorf school was highly valued by the mother, and the pupil was also satisfied, despite facing difficulties during the transition from the previous school. They appreciated the greater freedom given to pupils, support for creativity, the use of verbal assessment, a low number of pupils per class, and the fact that the school did not primarily focus on performance and mistakes. Although inclusive education was well-aligned with the educational approach in a Waldorf-type school, other problems still arose.

The reflection on this case reveals more fundamental issues within the entire educational system in the Czech Republic. Inclusion is primarily regarded as a social phenomenon, allowing students with special educational needs to be educated without exclusion from their natural social environment (Lebeer, 2006). In this instance, the pupil was willing to go to great lengths to make friends even outside school hours, but this proved challenging due to attending a school located in a more distant locality. This contradicts the basic principles of inclusion (Carrington & Robinson, 2006; Manning et al., 2016). Moreover, the change of his previous school was necessitated mainly due to unprofessional behavior, leaving the parents with no freedom of choice. Another challenge arose as the mother had to work as a teacher’s assistant for years to ensure her son’s safety and educational needs, which had a further negative impact on the student’s social life. Similar cases from the Czech Republic have already been published (Sedláčková & Kantor, 2022a). While the parents may have found the best available solution for their son in this case, the challenges stemming from the shortcomings of the educational systems should be acknowledged and used to inform the creation of more protective educational policies.

Findings from this study could be relevant also for teachers who encounter cases where pupils’ lives are at high risk, such as pupils with diagnoses like cancer, Duchenne muscular dystrophy, or cystic fibrosis. Some studies have dealt with similar cases and their impact on education (Gathercole, 2019; See Yeo & Tan, 2018). It is crucial for teachers to be aware of difficulties faced by these families, to be empathetic and understanding, especially since some experiences can be very painful. If the disability is hidden, the more the teachers should be reminded of pupils’ special needs so that nothing is underestimated (Sedláčková et al., 2021).

The high-level of cooperation with parents of pupils with serious disease is essential throughout the entire rehabilitation process, including education (Manning et al., 2016; Tso & Strnadová, 2017) and healthcare (Gathercole, 2019). In health care, cooperation within the rehabilitation team should optimally reflect the educational and personal needs of the pupil and the family (Gathercole, 2019; Martos - García & Monforte, 2019). When coping with difficulties, there is a high need for professional support, as indicated by several previous studies (Archer, 2013; Bywater, 1981; Elangkovan & Shorey, 2020; Kimbell et al., 2021; Moen et al., 2019). Both the mother and the pupil were aware of the importance of support from the entire family. While the mother played a key-role, the support of other family members, including the close relationship of Jirka and his younger brother, should not be underestimated. Similarly, the need for family support and cooperation was highlighted by Swart et al. (2004) and Lemos (2016). The support of healthy siblings was described by Read et al. (2011). Professional attitudes should be shaped with an expectation that the families seek support, and parents need to be assured that their children are well taken care of. This need is intensified by recurring traumatic situations that cause vulnerability and a tendency for hyper-protective care of the child (Beltyukova et al., 2022; Dashiyeva, 2010).

The study has its strengths and limitations. It explores an issue that has not been sufficiently researched yet and employs a rigorous methodology designed for the analyses of lived experiences. Many statements from both participants support the transparency and credibility of the study results. The limitations are mainly associated with the transferability of the findings. The results cannot be generalized to a wider population of learners with congenital heart disease and/or acquired brain injury, nor to learners from different socio-cultural backgrounds. There is a need for more research on the topic from diverse demographic and sociocultural backgrounds so that it is possible to gain a more robust understanding on this issue, optimally through data synthesis. As strong proponents of inclusive education, we believe that a typical educational environment should be the first choice even for students with high degrees of SEN. However, the current shortcomings of an inclusive environment increase numerous risks, how these students may face discrimination, and have their educational needs neglected. Therefore, we need to hear the voices of students themselves.

Another limitation is associated with the limited sources of data collection, because most of the results were based solely on the analysis of data from interviews. Additionally, none of the student’s teachers were willing to cooperate in the research investigation. To enhance the dependability of the study results, we conducted debriefing sessions to summarize the information provided by the participants and triangulated the data from interviews with educational and health care documentation whenever possible. Moreover, in phenomenological-hermeneutic methods (e.g., van Manen’s), objectivity is not the key point, as the analysis is focused on subjective experiences, regardless of whether they are objective or not.

5. Conclusion

Raising a child with a serious disease is a very demanding task. Traumatic situations related to a child’s health and life can heighten the vulnerability of family members and trigger concerns about an uncertain future. The family in this study valued education in an inclusive environment, but the pupil could not be educated in his closest social environment, mainly because of barriers created by a teacher. Additionally, the severe consequences of the pupil’s hidden disability were not adequately taken into consideration by teachers. This case illustrates the family’s struggle to secure a better educational path for their son, showcasing the high level of cooperation and participation of the mother in overcoming various barriers that could negatively impact the pupil’s education. Based on the study results, there is a need for supportive approach towards the families of pupils with SEN, enabling social participation within the natural environment of the pupils, and ensuring more adequate protection of the rights of pupils with SEN and their families.

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.

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.

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.

Appendix A.

Search strategy

Database/platform: EBSCO discovery (list of databases search through EBSCO discovery listed below)

Search strategy: AB (apallic syndrome OR brain injury) AND AB special needsDate of search: 25.9. 2023 (updated)No limitation of publication periodLanguage - only study in EnglishList of databases searched through EBSCO Discovery, accessed via Palacky University Olomouc: APA PsycInfo, MEDLINE Complete, MEDLINE, Complementary Index, Academic Search Ultimate

Results: n = 477

PRISMA 2020 flow diagram for new systematic reviews which included searches of databases and registers only

*Consider, if feasible to do so, reporting the number of records identified from each database or register searched (rather than the total number across all databases/registers).**If automation tools were used, indicate how many records were excluded by a human and how many were excluded by automation tools.

From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. doi: 10.1136/bmj.n71

For more information, visit: http://www.prisma-statement.org/

Table

No	Included studies
	Author, year	Title
1	Tran (2014)	Exploring the experience of children with disabilities at school settings in Vietnam context.
2	De Villiers (2015b)	Stories of school reintegration following traumatic brain injury (TBI): The experiences of children, their primary caregivers and educators in the Western Cape
3	Sedláčková et al. (2022b)	he Factors Important in Inclusive Education of the Pupil with Traumatic Brain Injury Identified on the Basis of the Lived Experience of His Mother.
No	Excluded studies with reasons
	Author, year	Title and	Reason for exclusion
4	Bennett et al. (2022)	Childhood acquired brain injury: the knowledge and training needs of special educational needs coordinators.	Study design: quantitative study
5	Bate et al. (2021)	Return to School after Acquired Brain Injury in the UK -The Educators’ Perspectives	Participant: perspective of teacher
6	Riccardi and Lundine (2022)	An Exploratory Study on Disparities in Service Provision and Long-Term Need After Early Childhood Acquired Brain Injury.	Study design: quantitative study
7	Howe and Ball (2017)	An Exploratory Study of Special Educational Needs Co-Ordinators’ Knowledge and Experience of Working with Children Who Have Sustained a Brain Injury.	Study design: quantitative study Particvipants: coordinators
8	Mychjalkiw (2004)	Return to school after brain injury. Archives of Disease in Childhood	Study design: quantitative study
9	Chesire et al. (2011)	Assessment of Students with Traumatic Brain Injury.	Not a research study
10	Middleton (2008)	Acquired brain injury.	Not a research study
11	Riccardi and Lundine (2022)	An Exploratory Study on Disparities in Service Provision and Long-Term Need After Early Childhood Acquired Brain Injury	Duplicity
12	Clark (1996)	Children and adolescents with traumatic brain injury: reintegration challenges in educational settings	Study design: quantitative study
13	Broocker (2001)	Children with Traumatic Brain Injury: A Parents’ Guide	Not a research study
14	Rader and Thomas (1995)	Educational challenges of students with traumatic brain injury.	Not a research study
15	Lash (2004)	Children and Youth with Traumatic Brain Injury.	Not a research study
16	Shoenbrodt (2001)	Children with traumatic brain injury: A parent’s guide	Not a research study (a book)
17	Roberts (1995)	The Return to School After Brain Injury.	Not a research study

Appendix B

Thematic areas for the interview

The topics included:the course of education from pre-school to the present;school selection process; the process of adaptation to the school environment;the impact of the child’s special needs on education and the application of educational support measures;family-school cooperation, including the relationship between teachers, pupils and parents;barriers and strategies to achieve the highest possible level of participation;the importance of school results; the importance of classroom and school climate;the scope and fulfillment of specific educational needs;difficulties in education and ways to overcome them.