The path to independent living: lived experiences of inclusive education for one of a set of twins with disabilities and her parents

ABSTRACT

This study describes the case of a student with congenital intestinal perforations and her experience with inclusive education in the Czech Republic. She is also a sister of an identical twin with cerebral palsy. The data were gained from semi-structured interviews and bio-graphical narratives of the student during her studies at the grammar school and from her parents. Van Manen’s analyses of lived experiences was used to identify important themes for each participant. The overarching themes present in their narratives concerned Lucy’s future and the choice of the most appropriate educational environment. The parents’ narratives focused more on barriers to inclusive education, benefits of inclusive environments, medical and educational care and family support based on close cooperation with school. For Lucy, the dominant theme was being a sister with a less severe disability and caretaking of her sister. In addition to enhancing the understanding of different needs of a student with congenital malformations and her parents’ experiences with inclusive education, it helped us to explore how the specific sibling’s constellation within her family and school contexts impacts her personal perspective on life, driven strongly by a wish for independence.

KEYWORDS:

• Congenital malformation
• parents
• inclusive education
• lived experience
• twin
• sister

1. Introduction

With the growing level of the quality of health care there is an increased likelihood of children born with serious health problems to have average or above average life expectancy. Congenital intestinal perforations are a rare example of congenital malformations (CoM) that occur mainly in premature babies (Harouna et al. 2018) and represent a serious health problem that can persist through adulthood (Talishinskiy and Tomita 2013).

With a growing number of pupils with special educational needs (SEN) in inclusive schools, the attention of researchers has been growing, focusing on when, how and to what extent support should be provided. However, based on the preliminary search, the qualitative studies exploring experiences of parents of students with congenital malformations and physical disabilities educated in inclusive environment are rare (Agaliotis and Kalyva 2011; Sedláčková and Kantor 2022b). This work presents a case study focusing on the lived experience with inclusive education of a student with congenital intestinal perforation and her parents. It is situated in a specific family context because the pupil is a ‘less’ disabled sister of an identical twin. The aim of this study was to answer the following research questions: What are the lived experiences of a girl with congenital malformation educated in an inclusive school? What are the experiences of her parents? The secondary objective was to investigate the experience of the girl’s education during the COVID-19 pandemic when the schools were closed and education was provided remotely (Zhou et al. 2020). Distance education provided some benefits however research indicates challenges for educational provision for students with SEN (Berasategi et al. 2022).

2. Methods

The qualitative design of the study was based on phenomenology and van Manen’s analysis of lived experience (Van Mannen 2016). The study was approved by ethical board of Faculty of Education, Palacky University Olomouc (no. 3S/2015).

2.1 The participants

The subject in this study is a 20-year-old girl, and her parents (Table 1). At the time of the interviews, she was in her last year of grammar school (she was one year older than peers) in a medium-sized Czech town. The school is barrier-free, it also includes a primary school and teachers have experience in teaching pupils with SEN. The girl was born as an identical twin. Shortly after her birth, she was diagnosed with a colon perforation that required repeated surgeries and a temporary stoma lasting up to five years of age. At the age of five, her intestines were submerged and healed. CoM and related interventions were reflected mainly in pre-school education and at the beginning of the first year of primary school. Experience with pain and hospitalisation was reflected in delayed development, her slow pace of work and difficulties in mathematics affecting her primary and secondary education.

Table 1. The family characteristics.

Participants	Personal characteristics and number/conditions of interviews
Sister of Lucy	female, 20 years old, Cerebral palsy (spastic diparesis with left hemiparesis; visual impairment), reduced mobility – use of orthopaedic wheelchair, without learning difficulties
Lucy	female, Lucy, 20 years old (at the time of the interviews), attending grammar school 4th grade, 2 individual interviews Diagnosis/functionality : CoM – perforation of the large intestine – solved surgically – complete healing in about 6–7 years of age; visual impairment; dyscalculia and slow pace of learning; Support measures – from the third grade a teacher’s assistant, an increase in time for completing learning tasks
Mother	age 40–50, secondary education, a housewife – she left her career to take care of her 2 daughters (twins); 2 individual interviews
Father	age 40–50, secondary education, works in technical field; lives in a joint household (a house with a garden in the village) with his wife, daughters and a dog; 1 interview in the presence of his wife and daughter

2.2 The data collection

Data were collected by the main author through semi-structured interviews (Cresswell 2018) with individual participants (3 interviews in June, 2 interviews in October 2021) and from the student’s school documentation. The main author has years of experience with teaching heterogeneous classes at elementary and secondary school, she is also a special pedagogue, and neither she nor the other authors taught the pupil who participated in this research or at the school that this pupil attended.

A brief questionnaire was used for gaining demographic details. The interviews were preceded by preparing the informed consent and by creating a research tool – a list of general topics or supporting questions for each interview (Cresswell 2018). Participants agreed to participate in the research by signing an informed consent. The interviews took place at participants’ home, first three were done with each participant shortly after lockdown cancelling (8th June) and two in autumn. They took about 35–50 minutes each. All participants were guaranteed confidentiality, therefore pseudonyms are used instead of the real names of the participants, institutions and places.

The interviews in the form of an autobiographical narrative began with asking Lucy and her parents to describe her educational experiences from the beginning (kindergarten) to the present. Participants were also probed about their thoughts about the future and the parents gave detailed information about Lucy and twin sister’s birth and associated health and social conditions. Each narrative was continuously stimulated by nodding or expressing consent or guided by pre-prepared researcher’s questions (Patton 2002). Each participant was given space within the interview for their own thoughts, feelings and questions, and was encouraged with understanding during the in-terview. Topics included education, SEN, adaptation to the school environment, illness/disability issues, school results, school and classroom climate, relationships with peers and teachers, feelings and emotions, behaviour, extracurricular and social activities, support measures, school-family cooperation, caring for a child with disability, problems and overcoming them.

2.3 Data analyses

First, a verbatim transcription of the audio recordings of the interviews was completed. In the second step the data were analysed according to the 6-phase van Manen’s analysis (Van Mannen 2016) that includes the formulation of the research questions, deepening of knowledge about the experiences through the application of in-depth interviews, thematic analysis with emphasis on the process and identification of the key themes of the phenomenon, describing the researched phenomenon by the art of writing and retelling, maintaining the focus of attention on the research question, and balancing research context by thinking about both the whole context and its parts (Van Mannen 2016). The researchers also adopted a reflective approach that enabled identification of content that was not directly mentioned in the course of interviews (e.g. suppressed wishes of Lucy) but emerged during the data analysis.

The procedure included a thematic analysis (TA), through which we identified the themes in a data set (Braun and Clarke 2006). TA was performed for each participant separately, subsequently the themes and sub-themes were compared, and we defined overarching themes (beyond the individual participants) – see Appendix A.

3 Results

3.1 Common themes

During the analyses some findings pointed to the themes that were common for all three participants. The first common theme, difficulties with teachers during the pandemic lockdown (1), was conveyed by both Lucy and her parents through dissatisfaction and disappointment associated with some teachers’ behaviour, insufficient learning support, and poor provision during this period. Although Lucy and her parents believed that sufficient technical skills were provided to both students and teachers for online learning during the pandemic, they explained that some teachers lacked computer literacy or the ability to use online materials effectively. Relatedly, Lucy explained that some teachers exhibited an unwillingness to devote extra time to students, which she felt the unprecedented situation necessitated. She explained: ‘ … the Czech and literature lessons were limited to tasks from the textbooks. Our teacher only sent us page-numbers to take notes, on and off, so that she could demonstrate some activity during quarantine … When we [students] were interested in having individual tutorials for maths’s, the teacher refused’. Lucy’s parents described the situation similarly and Lucy’s mother expressed indignation about what she perceived as a sudden change of the character of some teachers: ‘it was a crisis situation that showed everyone’s true self, either in a good or bad sense of the word’.

Both Lucy and her parents attributed their daughter’s failure in her leaving examination to the poor provision of teaching during this period: ‘ … our maths’s-teacher – he sent us examples of maths’s problems without any explanation. Just work on the problems and “learn from it”. But how?’. In contrast, Lucy expressed appreciation for several teachers, who found ways to explain the subject matter covered in the curriculum to students and supported them as much as possible.

Another common theme was (2) Future, perceived from the point of view of independence and career. Lucy’s future after the grammar school meant an important life step for her because it was the first time she would be leaving her sister and setting out on her own independent life away from home and family obligations according to her wishes and plans (Appendix A). The end of her secondary education was complicated by her failure of the final examination that could jeopardise her future studies and career, therefore, concerning Lucy’s future, the successful completion of grammar school was a priority for all three participants: ‘She’ll pass in September. And then? … We’ll drive her there (to the new school) and say bye. And she’ll be on her own … ’ (father). Lucy passed the exam on her second attempt in autumn and entered the new school (Appendix A).

3.1 Lucy

Other themes emerged for Lucy: (1) Decision-making (related mainly to the choice of school) and (2) A sister with cerebral palsy (compromises, commitment and tolerance). In terms of decision-making, Lucy explained her reasons for choosing this grammar school. She highlighted the choice of subjects, her SEN and her positive pre-experience at the attached elementary school as influencing her decisions. Another salient factor was that this school was ‘barrier-free’ and enabled her to be with her sister who needed Lucy’s support at school. Lucy explained the importance of being able to be with her sister at school as central to her decision-making process: ‘she didn’t need to sit alone with the assistant there, because I could also bring her meals … ’.

Related to decision-making, Lucy’s considerations about her sister and responsibility she felt for her were salient themes. Although Lucy has her own special needs, the majority of attention was paid to the needs of her sister with CP. She took responsibility for her sister and her sister’s safety, helped her at school with self-service (e.g. boarding) and from her interviews, seemed to, at times, neglect her own needs. Being a sister with a ‘less’ severe disability strongly affected her school and personal life, it was reflected in her limited inclusion in groups of peers and seemed to con-tribute to a lack of developing friendships. Lucy explains her friendships as spending time together in specific circumstances: ‘ … when my classmates saw that there were two of us (Lucy and her sister), they left us alone, they didn’t make any contact with us. Maybe there were kinda barriers, worries … ’. From the interviews with Lucy, it was evident that being a sister of a girl in a wheelchair greatly influenced her perception of disability and reflected in qualities such as empathy, tolerance, consideration and understanding.

3.2 Mother

Three themes were defined for the mother: (1) Barriers to inclusive education, whereas some identified barriers were related to the situation 15–20 years ago, for example the lack of information or instances of being discriminated against by professionals in the educational system, this included highly unprofessional comments, e.g. from a psychologist who was instead of giving helpful counsel to the mother responding in this way: “take her home, we didn’t manage to do almost anything and that’s too much for my nerves!’“Some barriers were experienced in recent years, e.g. problems with the new school headmaster´s attitude to learners with SEN and unwillingness to address their needs.

(2) Two children with different disabilities = a great challenge: It was not easy for the family to synchronise parental and medical care and meeting educational and other needs of their twins with different disabilities. An early challenge was finding and choosing a kindergarten for both children and the family experienced the first disappointment: ‘Well, the first visit was here in the village, because we had it at hand, but they refused to take her there. She (the headmaster) literally said “I don’t want the fucking kid here”. Anyway, I made it clear in my head that I won’t send my children there’. This experience limited their possibilities for their daughters’ schooling. They chose to send them to a segregated (special) kindergarten where they could both attend. Both parents expressed that there were some advantages to the special/segregated school, mostly because they did not have to separate their daughters. As the girls got older, Lucy’s sister’s needs had a considerable influence on Lucy’s options for secondary school. Throughout her educational journey, it seems the needs of Lucy’s sister were prioritised, even if the setting was not ideal for Lucy.

(3) Family support: The theme of family support is related to the overall approach of the parents and the functioning of the family as a whole. The mother explained that she viewed spending time as a family was a key priority. This included engaging in shared activities, mutual support and family cohesion that contributed to the highest possible quality of life and psychological well-being for Lucy and her sister. The mother conveyed that the strength of their family support system was reflected not only in their personal lives, but also in their daughters’ education, self-esteem and aspirations: “We are an active family and our daughters’ disabilities don’t limit us”.

3.3 Father

Three themes were defined in the father’s case: (1) Frustration concerning the economic side of educating children with SEN: The father reflected on the inefficiency of certain measures and funding arrangements at school where both daughters were educated: ‘ … there is a kind of artificial employment, or something like that. Our Jitka and Lucy have been assigned an assistant since about the 3rd grade. That school is flat, so even Jitka, who can’t walk, doesn’t need it. Neither of daughters needs assistant support to that extent’. (2) Lack of opportunities and support by school management: Lucy’s father repeatedly expressed dissatisfaction with the school’s one-sided, performance-oriented approach and overall focus on science, which he felt reduced the motivation of students gifted in the humanities. He viewed the headmaster as resistant to supporting students with SEN, a person who did not give students with disabilities a chance to demonstrate what they could do. ‘…the performance is evaluated, y’know – how many Olympics, how many athletic competitions, how many cups … . They are not evaluated on whether they have integrated/included someone’. He was saddened by his experiences and felt the school did not view the inclusion of students with disabilities as beneficial to the entire school community or value the successes of students with disabilities. (3) Overall satisfaction with the choice of school: Despite some troubles that arose during schooling, Lucy’s father expressed satisfaction with the choice of all the school facilities. According to him, the positives always greatly outweighed the negatives: ‘ … we were also lucky with the teachers and the people there, as they were mostly good’. Even though there were challenges, Lucy’s father conveyed a sense that Lucy’s educational experiences have led to her success at completing school and pursuing a future career and he expressed the view that Lucy felt mostly happy at school.

4 Discussion

The participants narratives informed us about important themes associated with inclusive education that included important life decisions, the question of the future and the importance of family support (Elangkovan and Shorey 2020). At the same time, themes pointed to problems connected to discrimination, unprofessional approaches of some experts and unexpected behaviours of some teachers during the lockdown (Sakarneh 2021). In addition, the narratives demonstrate how the life and education of a child with SEN can be affected by the presence of a twin with a more serious disability (Pit-Ten Cate and Loots 2000).

Huge caregivers’ burden and challenging synchronisation of medical, educational and parental care were described for individuals with other types of SEN, e.g. stroke (Kokorelias et al. 2020), and caregivers are related to playing multiple roles (Roper et al. 2014). However, in this case, Lucy’s parents experienced increased demands by having twins with serious disabilities. The challenges of synchronising support and needing to play multiple roles as caregivers were highlighted recently during COVID-19 due to limited support received by the school for their daughters’ education.

On the other hand, Lucy’s parents highlighted a generally positive outlook on Lucy’s educational experience. The father expressed his satisfaction with the school choice notwithstanding different shortcomings within the educational system. This may be typical of many parents who cope with these challenges by suppressing them to function in everyday life (Sedláčková and Kantor 2022a). He also expressed frustration about inefficient management of finances for students with SEN that are rooted in the Czech legislative system of support measures that is relatively new, created in 2016.

When reflecting the interviews with Lucy, she conveyed a strong need for independence. The conflict between her voluntary decision to sacrifice her life to help her sister and a desire for ‘typical’ age-related experiences, and friendships with peers was supported by some statements describing different attitudes of her classmates in the presence of her sister, supplying the role of assistant for her sister, etc. Similar experiences have been reported by neurotypical siblings of children and youths with disabilities (e.g. Freeborn and Knafl 2014), but the case of Lucy was specific because of her unique sibling constellation. We suppose that the gradual decrease of health problems for Lucy led to the marginalisation of her own needs and a shift of her and her parents’ attention to her sister with CP. In such cases, the students are under a great deal of pressure, since their special needs may be overlooked and, in addition, they also take on the caregiving burden, and responsibility for their sibling (Harden, Black, and Chin 2016). Lucy accepted a huge burden by taking care of her sister. This burden and responsibility and its impacts on Lucy likely need to be considered by teachers to provide Lucy with appropriate educational supports. For example, Lucy’s care-giving burden may lead to increased fatigue, psychological wellbeing issues need for support for inclusion in her peer group, and ensuring an appropriate academic workload.

The case of Lucy may also be analysed within the educational and sociocultural context of the Czech Republic. The educational system has improved a lot in two decades. Unfortunately, it seems not all the teachers are ready to fully accept and respect inclusion and may not understand the complex needs of students with SEN, whereas such teacher’s competence in inclusive education is essential (Pitten Cate et al. 2018). Shortcomings in the Czech educational system and limited professional development of some teachers was apparent during lockdown, when teachers´ support was most needed for students with SEN.

There are some limitations of this study. Autobiographic narratives concerning long periods of time could impact the dependability of the results, as some information may have been distorted. However, we highly valued these first-hand narratives which provided the most direct information about the subjective experience of people that are often marginalised. To achieve a more complex picture of the educational experience of Lucy, we originally aimed to include data from the interview with the student’s sister with CP, but the data collected was not sufficient for the analysis of lived experiences. The author’s effort was also to conduct interviews with the teachers, but the COVID-19 pandemic restrictions and decision of the headmaster of the grammar school made it impossible.

Ethics statements

The research was reviewed and approved by Ethics Committee of Faculty of Education, Palacky University Olomouc (no. 3S/2015).

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.

Appendix A

Table A1. The presence of the themes and sub-themes in each participant.

Categories/main themes	Themes/Sub-themes	Mother	Father	Lucy – the student with CoM
Difficulties with teachers during the pandemic lockdown	some teachers’ lack of computer literacy, key competencies for preparing and using on-line materials, conducting tests and using technology ‘Maybe he just wasn’t able to work with a computer like some other teachers, or I don’t know … ’ (Lucy) ‘Some teachers weren’t able to teach on-line and on the other hand, one teacher helped us, for example, who only taught her from a maths seminar, and he was able to record a video, when counting on the blackboard, and just sent the videos and… and I don’t think it’s that difficult to do it’. (mother)	√	√	√
	some teachers´ unwillingness to devote extra time to students ‘Both our girls are so honest, they have maybe 4 lessons absence a year, and now, when they could have the tutorials in the last 14 days, they were the only two, who were attending. … Thea are hardworking girls, not any slobs and therefore the teacher shouldn’t refuse to help them!’ (mother) ‘Well, the headmaster sent us an email, probably to all parents, where he explained how terribly difficult it was for teachers to tutor like that and how many hours they spent on it and and … .but the baker also gets up to start work at 5 so that we can buy rolls in the morning, I understand they have to work more but … ’.(mother)	√	√	√
Barriers to inclusive education	the lack of information ‘ … well, I didn’t know at that time that she could get an assistant or something like that, nobody told me that they could go to kindergarten and get an assistant, I didn’t know anything, and I didn’t have time to go to the computer at all, with two children, it was like such a distant planet, the computer!’ (father) ‘Spa is an excellent place for getting information, because you meet other mothers there and now those mothers each have a different experience and they say “we were there and there it’s like that”’ (mother)	√	+
	discrimination, prejudice “Little Lucy simply wanted to go to kindergarten. She actually had a duct from her intestine, and had a bag attached, … and what the headmaster told me derailed me so much, it was the first time, like that, like that a slap, but it’s already been … the girls are 20 now, so we’re talking about the situation almost 20 years ago … , and maybe some inclusion wasn’t even spoken then, yeah. But, that was my first crash like that, back then, like real, I just … (mother)	√
	the only option – special kindergarten “So it was a very big blow to me. Anyway, I made it clear in my head, I knew that in a kindergarten, where they already know in advance that they don’t want her, without knowing what she is like, I said that I probably wouldn’t send any of my children there. So I started asking around the nearby town and we came across a special kindergarten, and actually there they took her completely. They took both of them. The director was more accommodating to us, so that we didn’t have to drive one there and one somewhere else, … , the teachers there had no problem with anything.” (mother)	√	+
	unprofessional approach ‘… it’s actually all about the people, … I went with her to the psychologist, because I didn’t know how to work with her, so that she could tell me, give me advice … again I didn’t get any help and these are the experiences, thats’s why I decided not to go to the counselling centre any more’. (mother)	√	+
	troubles with the headmaster and his inappropriate approach ‘ … he was so complicated, nothing had a simple solution, he saw problems in everything … whereas the Deputy Director arranged it at once’. (father) ‘He’s a maths teacher and what in’t placed in the table doesn’t have a maths formula, that doesn’t make a sense to him’ (mother)	√	+
Lack of opportunities and support by school management	the school’s approach unilaterally focused to performance ‘This is important to them: he participated in this and that, and there’s a whole giant display case of cups, yeah. Which I understand, they want to present themselves – we won there, there, there, … but there is no money to participate in a recitation competition or the Olympics in the Czech language, for example’. (father)	+	√
Two children with different disabilities = a great challenge	complications in trying to synchronise medical and parental care with the education of both daughters ‘ … no one else worked out with Jitka, no one else went to the doctors with either of them (daughters), and so on, and no-one could do everything the way I did. We rode little Lucy to doctors for a long time, and she was completely different’. (mother)	√
	gradual transfer of support to the daughter with a more severe disability ‘Lucy no longer needed such support since then, so … ’ (mother)	√		+
Future, perceived from the point of view of independence and career	mastering the leaving examination. ‘I’ll have to study hard in holiday time, I hope I pass. I must … ’ (Lucy) ‘Yeah, I passed maths’s and I’m already there (the new school), I stay at dorm … ’ (Lucy) ‘Now she has to pass her leaving exam of maths, it’s the priority now. She has already been accepted to higher education’. (mother) “She’ll pass in September. (father)	√	√	√
	professional career (follow-up studies) “I’m applying to two schools … I’ve been already accepted. … in the 9th grade I didn’t know yet what I wanted to do, … .But now I already know that I want to follow the pedagogical path. (Lucy)	√	√	√
	independence – the choice on her own; study without her sister ‘And then? … We’ll drive her there (to the new school), and say bye’. (father)		+	√
Family support	comprehensive child support: ‘We spend time together whenever possible … ’ (mother)	√
Overall satisfaction with a school choice	optimistic view: ‘sometimes something went wrong, but looking back, I think we made the right choice, all of them – that it worked’. (father)		√
Embarrassment concerning the economic side of educating children with SEN	waste of financial resources vs lack of funds ‘sometimes money is wasted and then missing where it is needed … ’ (father)		√
Decision-making (related mainly to the choice of school)	studies/choice of school ‘We chose that grammar school, but we chose it mainly because it was the only one at that time that was barrier-free’. (mother)	+	+	√
A sister with cerebral palsy (compromises, commitment and tolerance)	schoolmate, friend ‘ … .when she’s (her sister) at school, we spend break time together’ (Lucy)			√
	responsibility, support ‘I helped my sister, when she had the plaster or something, I made a connection … I was like a mediator’ (Lucy) ‘She’s always helped Jitka (her sister) … .we didn’t want Lucy to drag her around the whole trip. She weighs 45 kilo even with a schoolbag, so why should she?’ (mother)	+		√
	dedication ‘I didn’t have to, but we were both there, so I did it … ’(Lucy)			√
	limited friendly relationships with peers ‘it was better on the ski course … Well, they (schoolmates) were a bit friendlier than at school, but I probably wouldn’t discuss this matter any further’. (Lucy on friendships at school)			√
	choice of schools (kindergarten, elementary, grammar school) ‘I didn’t know the kindergarten, but mom said it was because of me, but the elementary school was barrier free, so that Jitka could go there, as well as the grammar school, but there were more reasons … ’ (Lucy)	+	+	√

√- participants openly talked on the theme in detail; + - participants mentioned it but it was part of a different theme for that participant; CP- cerebral palsy.