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10.12688/f1000research.129122.3
Research Article
Articles
Interactions between special education teachers and children with chronic complex conditions: A qualitative study
[version 3; peer review: 2 approved

Fujino Haruo Conceptualization Data Curation Formal Analysis Funding Acquisition Investigation Methodology Project Administration Resources Writing – Original Draft Preparation Writing – Review & Editing https://orcid.org/0000-0002-8889-1199
a12
Matsumoto Megumi Conceptualization Formal Analysis Writing – Review & Editing https://orcid.org/0000-0003-2946-5867
3
Mieno Aya Conceptualization Formal Analysis Investigation Writing – Review & Editing 14
1 Department of Special Needs Education, Oita University, Dannoharu 700, Oita, 8701192, Japan
2 Department of Child Development, United Graduate School of Child Development, Osaka University, Yamadaoka 2-2, Suita, Osaka, 5650871, Japan
3 Department of Behavioral Neurology and Neuropsychiatry, Osaka University United Graduate School of Child Development, Osaka University, Yamadaoka 2-2, Suita, Osaka, 5650871, Japan
4 Hita Special Needs School, Nishiarita 2941-1, Hita, Oita, 8771352, Japan
a fjinoh@kokoro.med.osaka-u.ac.jp
No competing interests were disclosed.

22 5 2024
2023
12 2320 5 2024
Copyright: © 2024 Fujino H et al.
2024
https://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Background

The number of children with complex medical conditions has increased in recent decades. In this context, a complex chronic condition is characterized by multiple morbidities that require intensive or continuous health care according to the level of severity. Given their various health conditions, it is challenging to provide special education to these children, but there is still insufficient evidence regarding the practical experiences of educators. The aim of this study was to investigate special education teacher’s perceptions, experiences, and challenges while developing interpersonal relationships and communicating with children who have complex chronic conditions.

Methods

We recruited and interviewed 21 special education school teachers in Japan. The transcripts of the interviews were analyzed using thematic analysis.

Results

Our analysis revealed four themes, including “searching for the meaning,” “complex chronic conditions as a difficult reality,” “widening experience for the future,” and “priority for interacting with children.” These themes reflect the perceptions, experiences, and challenges of the special education teachers.

Conclusions

In cases where children have severe functional limitations, it is more challenging to understand child-teacher interactions. This highlights the importance of searching for meaning in educational practices used among children with complex chronic conditions. Our findings may provide helpful insight into the experiences and challenges faced by special educators who engage with these children.

chronic illness
children
special education
interaction
child health
profound intellectual and multiple disabilities
Japan Society for the Promotion of Science17K14067 21K03047 This work was supported in part by research grants from the Japan Society for the Promotion of Science KAKENHI (17K14067 and 21K03047). The funders had no roles in the study design, data collection, data analysis, decision to publish, or preparation of this manuscript. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Revised Amendments from Version 2

We have revised the manuscript based on the reviewer’s comments for the second version. As the reviewer suggested, further details about the methods used in this study were included in the Methods section and discussion about the limitations of this study in the Limitations section.
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pmcBackground

Children with complex chronic conditions or special health care needs

The number of children with complex medical conditions has increased in recent decades. However, the rate of prevalence varies based on the definition and study context, ranging from 5% to 30% ( Beers et al., 2003). A recent report showed that 18.8% of children in the United States had special health care needs ( Ghandour et al., 2022). While various categorizations and definitions exist in the literature ( van der Lee et al., 2007), complex chronic conditions (CCC) is defined according to the International Classification of Diseases ( Feudtner et al., 2000; Feudtner et al., 2014). In an earlier study, Feudtner et al. (2000) proposed the following definition for CCC:

“Any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center.”

To date, the revised description of CCC covers various complex medical conditions, including neurological and neuromuscular disorders, cardiovascular disorders, congenital and genetic defects, and technology dependence (e.g., tracheostomy) ( Feudtner et al., 2014). In this framework, an epidemiological survey in the United States found that approximately 10% of children had one or more CCC, while 2% had multiple CCC ( Bjur et al., 2019). In Japan, relevant data show that around 20,000 students (~0.002% of children) with health disorders receive special education in accordance with their special health care needs ( MEXT, 2018). Although many children with severe CCC who receive inpatient treatment appear to attend special needs schools, educational statistics on this issue are currently unavailable in Japan. While the exact rate of prevalence depends on the population, it is clear that there is an increasing number of children with CCC, which has therefore become an important area of focus in medicine and education ( Feudtner et al., 2014; O’Connor et al., 2019).

Children with multiple CCC generally exhibit more severe functional impairment and limited participation because of their disorders. Moreover, some children with CCC and severe intellectual disabilities are classified as having profound intellectual and multiple disabilities (PIMD), which is characterized by very severe cognitive and neuromotor impacts ( van Timmeren et al., 2016). For example, the causes of PIMD include genetic disease, brain malformation, oxygen deficiency, and/or intractable epileptic seizure. Such conditions vary across a range of factors, including severity, trajectory, multiple organ involvement, medical and technological assistance, and special needs to address psychological and developmental difficulties ( McPherson et al., 1998; van der Lee et al., 2007). Thus, children with CCC may have a variety of special needs that require more attention and educational support in the school setting.

Educational challenges confronted by special education teachers who engage with children with CCC

Schools for sick children play cardinal roles in the education and development of those with health disorders that require long-term treatment or frequent hospitalization. Although inclusive education is emphasized in the general school setting, challenges still arise when educating children with CCC ( Seki et al., 2017). As emphasized in special needs education, higher expertise and continuous learning are also expected in the Japanese educational system ( Isogai, 2017). Given these factors, those with CCC or severe conditions often receive individualized education at special needs schools that are located in or adjacent to hospitals.

Since communication and interpersonal relationships are essential components in child development, the Japanese special education system aims to establish both ( MEXT, 2017). However, teachers who educate children with CCC may have difficulty achieving these goals due to functional limitations that arise under complex medical conditions. Moreover, children with very limited functioning require special curricula on a daily basis as well as continued intervention to improve their arousal, positioning, motor function, and communication ( Yeh et al., 2019). Despite the fact that scholars have identified a gap between expected educational standards and actual practice, there is still a lack of evidence on the difficulties and challenges experienced by teachers ( Taniguchi, 2011b). In addition to the perspectives of parents and children, it is essential to investigate those held by teachers, as these latter points of view can help clarify practical roles when educating students with chronic conditions ( Runions et al., 2020). While previous studies have focused on general difficulties in this context, there is still a lack of evidence on specific challenges that arise when attempting to establish interpersonal relationships and communicate with children with CCC, especially in the Japanese educational system ( Takeda, 2006; Taniguchi, 2011a). To improve special education practices when teaching children with CCC, it is therefore critical to investigate how teachers themselves understand and experience interactions and communication difficulties.

Aim

This study investigated current perceptions, experiences, and educational challenges that special education teachers encounter when developing interpersonal relationships and communicating with children with CCC. We first developed the following qualitative research questions: • What difficulties do teachers have when interacting and communicating with children with CCC?

• How do teachers perceive their experiences and educational practices when engaging with children with CCC?

Methods

Study design

This study adopted a cross-sectional qualitative design with semi-structured face-to-face interviews conducted on an individual basis from August 2018 to February 2019.

Participants

The study participants were teachers who provided special needs education to sick children in Japan. The participants were recruited based on their experience in teaching sick children (i.e., health disorders). We set the following inclusion criteria: 1) experience teaching children with CCC and 2) work in special needs schools for health disorders. The first criterion was confirmed after the interview because we obtained detailed information on their teaching experience in the interviews. In cooperation with their school principals, we selected participants with diverse backgrounds (i.e., elementary, middle, and high school levels and years in experience). The potential participant teachers were selected by the school principals or a senior teacher based on the teachers’ experience and backgrounds. Teachers with minimal experience in this area (i.e., less than four months) were not recruited. Ultimately, we recruited 21 participants from three schools for hospitalized children with health disorders, including 15 from School 1, 2 from School 2, and 4 from School 3. All 21 teachers participated in this study and were confirmed that they had experience in teaching children with CCC. We selected School 1 because it was the only school for hospitalized children with health disorders in Oita prefecture, Japan, where this study was conducted. However, Schools 2 and 3 were located in Oita and Hokkaido prefectures and they were selected based on differences in the conditions of children therein.

Settings

More specifically, School 1 was a special needs facility for children admitted to an adjoining hospital. The conditions of their disorders varied, including internal organ diseases (e.g., kidney diseases), neuromuscular disorders, and neurological disorders. As for functioning, their restrictions ranged from mild (e.g., physical activities and food intake) to severe (e.g., multiple severe disabilities). Of note, the severe conditions included a permanent vegetative state caused by hypoxic encephalopathy or traumatic brain injury. School 2 was a special needs facility for students who received outpatient treatment in Oita, while School 3 was a special needs facility in Hokkaido (another northern area in Japan) that received inpatient children with muscular dystrophies.

Participants’ characteristics

Table 1 lists demographic information for the study sample. As shown, 10 (48%) of the participants were women. Across the sample, teaching experience ranged from eight to 40 years (median 19, interquartile range [IQR] 13–29), while experience with special needs education for children with health disorders ranged from less than one year to 35 years (median 6, IQR 3–7). As for grade level, their work included students from elementary to secondary school. Table 2 summarizes the conditions of children from relevant experiences of the teachers.

Table 1. Participant demographics.

Demographic information	n	
Sex		
Women	10	
Men	11	
Age (years)		
20–39	4	
40–49	10	
≥50	7	
Years of school teaching experience		
1–10	2	
11–20	9	
≥21	10	
Years of experience with children with CCC		
0–5	8	
6–10	10	
≥11	3	
Department		
Elementary	9	
Lower secondary	4	
Upper secondary	8	
CCC: complex chronic condition

Table 2. Chronic conditions that participants observed in their teaching experiences.

Disorder categories	Specific disorders	
Disabilities (diseases not specified)	Profound intellectual and multiple disabilities	
	Severe motor and intellectual disabilities	
Neurological disorders	Cerebral palsy	
	Hypoxic ischemic encephalopathy	
	Intractable epilepsy	
	Congenital hypomyelinating leukodystrophy	
Neuromuscular diseases	Muscular dystrophy	
	Congenital myopathy	
	X-linked myotubular myopathy	
	Spinal muscular atrophy	
Other conditions	Chronic kidney disease	
	Cancer	
	Crohn’s disease	
	Obesity	
	Trisomy 18	

Procedures

This study adopted a cross-sectional qualitative design with semi-structured face-to-face interviews, as conducted on an individual basis from August 2018 to February 2019. The interview schedules were arranged with a contact teacher at each school. As such, we asked the participants about their practical experiences and difficulties when engaging with students with CCC. We audio-recorded all interviews and transcribed for analysis. To draw narratives from their experiences, we developed an interview guide to capture potential challenges and personal beliefs regarding communication and interpersonal practices with children with special health care needs. This included questions about difficulties that may arise during teacher-student interactions, restrictions, and personal thoughts and practices (e.g., “Please describe your experiences when teaching children with complex chronic conditions, including any challenges you confronted during communication and when developing interpersonal relationships”).

Specifically, we developed the interview guide using knowledge about the domain of interest, a literature review, and educator opinions. Domain knowledge included the conceptualization of education for sick children, knowledge of the diseases of children with CCC, and resources in Japanese educational systems. The interview-guide was developed by two researchers (first and third authors), who had different professions. A pilot-testing of the guide was not performed for this study. Although we used this guide to elicit experiential narratives, we also encouraged the participants to talk freely about any relevant views, ideas, experiences, and challenges. The interview guide can be found under Extended data ( Fujino, 2022).

The interviews lasted from 43 to 71 minutes (median 52), and were conducted in Japanese by the first and third authors and a research assistant. The interviewers discussed the research aim, topic, educational systems, and possible challenges when teaching children with CCC several times. The first author provided training (about 4.5 hours) for the current study to maintain the quality of the interviews.

Data analysis

We analyzed the interview data through a thematic analysis. This allowed us to identify themes pertaining to the beliefs and challenges expressed by participants when teaching children with CCC at special needs schools. Using the thematic analysis approach, researchers aim to explore experiences and perceptions based on qualitative data ( Braun & Clarke, 2006; Clarke & Braun, 2013; Terry & Hayfield, 2021). In this study, we familiarized ourselves with the interview data by repeatedly reading the transcripts. Prior to identifying themes, we inductively coded the transcripts to identify relevant features based on our study topic. We did not generate a priori codes. Before the data were coded, impressions of the interview transcripts were discussed between the first and third authors. In the coding process, the authors tried to create codes that summarized the data meaning based on the research questions of this study. The first author coded the transcribed text, then discussed the coding with the second author. Because the codes were modified during this discussion, the first author re-coded the original text to confirm the data context. Only the first author coded all the transcripts based on the approach employed in thematic analysis ( Braun & Clarke, 2021; Clarke & Braun, 2013). The themes were developed by repeatedly reviewing the content of the code, creating tentative themes, comparing the theme to the code, and repeating the review to ensure that each theme reflected a central organizing concept ( Clarke & Braun, 2013). We finalized the themes and codes through this iterative process. As an exploratory analysis, we also investigated differences based on years of experience educating sick children. In these processes, we used MAXQDA 2022 (VERBI Software GmbH, Berlin, German), a software for qualitative data analysis, in coding and integrating the transcripts. After completing the qualitative data analysis in Japanese (the original language of the data), the excerpts were translated into English for presentation in this article by a professional bilingual translator.

The key assumption was that teachers may confront challenges when teaching children with CCC. In this context, challenges related to communication and interpersonal relationships may be central issues; moreover, these factors may be compounded by restrictions in the educational environment ( Takeda, 2006; Taniguchi, 2011a). The first author is a psychologist who works with children and adolescents with disabilities, focusing on psychological support and special educational needs. The second author is a clinical psychologist with experience providing psychological support to individuals with neurodevelopmental disabilities and mental disorders. The third author is a special education teacher.

Ethical considerations

This study was carried out in accordance with the ethical standards set forth in the 1964 Declaration of Helsinki and its later amendments. The protocol was approved by Oita University Faculty of Education Research Ethics Committee (approval number: H30-001-013). We obtained written informed consent from all participants prior to study enrollment. Participants agreed to the following treatment of data: the materials obtained in the interviews will be partially reported but personally identifiable information will be processed, and the materials will not be publicly available. We removed any identifying information from the interview transcripts before presenting them in this manuscript.

Results

We identified four themes from the narrative interview data, including “searching for the meaning,” “CCC as a difficult reality,” “widening experience for the future,” and “priority for interacting with children.” In the following subsections, we explain these themes and provide direct quotes from participants. As we did not identify clear relationships between the thematic contents and number of years educating children with CCC, we omitted this subgroup analysis from our discussions. Participant demographic data can be found under Underlying data ( Fujino, 2022).

Searching for the meaning

This theme describes beliefs about teacher-child interactions. The central concept pertains to the “true” meaning of responses and interactions with children with CCC, especially among those with severe conditions. In particular, it can be difficult to interpret responses from children with minimal communicative abilities (i.e., recognized responses are very subtle). Although objective evaluations are required in professional practice and may be useful for identifying consistency in reactions, subjective interpretations are also essential when attempting to find the meaning of the interactions.

In regard to communication difficulties, the central experience pertained to how teachers comprehended subtle responses from children with CCC. Some participants discussed questions about this issue when describing interaction problems. For example, children with profound disabilities often have minimal physical functioning and may only be capable of slight movements in the fingers or eyes. At the same time, comorbid intellectual and/or sensory disabilities complicate the process of understanding their actions and responses. In such cases, teachers may have difficulty interpreting the meanings of ambiguous or weak responses:

The truth could be different from what I am thinking, but I do it [interacting] based on my own interpretation of the situation … it is difficult to say whether some sort of interaction with the intention of communication was actually established. (…) If someone were to ask me how I really think about the situation, I have to admit that I am not sure. I really don’t know. (P10, 6–10 years of experience with sick children)

From this perspective, the “true” meaning of subtle physical responses is unknown. More difficult cases occur when interacting with children who exhibit “ hardly any such movements,” at times in association with a disorder of consciousness. One participant said the following: “ Although there are some of them who are like this [who react with small movements], there are also those who cannot even express themselves in this way. It becomes really difficult in such cases” (P13, 6-10 years of experience for sick children). Teachers who successfully interact with students with CCC may experience a “really a wonderful feeling.” While the participants intricately explained their beliefs and emotional experiences in the context of interacting with children with children with CCC ( Table 3, quote 1), their attempts were not always successful, especially in cases where children had minimal functioning. For example, one participant said the following about interacting with children who had disorders of consciousness: “ feels like I am talking to myself and putting on a one-man show.” This seems to describe an overly exhausting practical experience.

Table 3. Searching for the meaning.

Quote	Participant, Years of experience with sick children	Transcript	
1	P13, 6–10	“When there are moments when we [children and teachers] can enjoy together, those times when I can really feel that we are bonded to one another, I feel wonderful … when I can get a reaction out of them, it was really a wonderful feeling.”	
2	P02, 6–10	“However, I don’t think it is the case that I don’t know anything. Well, I guess, strictly speaking, we have not established anything; but, I have been trying to communicate. I have been trying to make approaches and interact.”	
3	P01, 1–5	“It’s hard to say without this kind of numbers and such. I am concerned that it may be just my own personal impression; but, in order to prevent this, we have been keeping records as part of our school’s study and checking to see if it is the teachers’ assumption, too, so I have come to understand that if we do it objectively in this way, we can be sure of it.”	
4	P08, 6–10	“I just want to make it a little bit clearer as to when he is sleeping and when he is awake. Since we don’t know right now, we decided to define he is ‘awake’ when his heart rate is above 70, and ‘asleep’ when it is below 60. Since he is here in the hospital, his heart rate is recorded like this every two seconds, so I got the data once and made a chart for the week, and about 25% of the time during the week it was over 70; but, even after going that far, I still wasn’t sure if it was really appropriate or not.”	
5	P12, ≥11	“I wonder if it would be good to do something like create a story together with the child … that’s what I thought as I was talking to you. However, there is no way for me to verify if it’s actually true, but maybe something changes when you interact with a child, thinking that that’s the case.”	

Despite various difficulties during teacher-child interactions, the participants insisted that they made attempts ( Table 3, quote 2). To avoid subjective interpretations made solely based on impressions, objective observations or physiological responses (e.g., heart rate and SpO 2) may also be used to assess the status and reactions of children ( Table 3, quotes 3–4). By contrast, several participants described the need to make their communications into “a story.” Such narratives are also related to difficulties and questions pertaining to their engagement with children, especially among those with minimal functioning. One participant described the meaning of an interaction with a child with disorder of consciousness, wherein the lack of “readable” responses made it difficult to conceive the existence of an interpersonal interaction. As an alternative to objective assessments of responses/reactions, the participants sought more subjective individualized “stories” to derive meaning from their practices ( Table 3, quote 5). One said the following:

Thus, objectively there is something there, and if there should be a reaction to it, and I can’t react back at all… so, in that respect, that’s why, when it comes to how to interact, whether something is there or not could just be more a problem from my side. It could be that something really is there, and I just can’t read it. That’s why [I think] a “story” is necessary here. It’s not that I am able to communicate with a person because I understand, but they are already there, existing, and they have a story. (P08, 6–10 years of experience with sick children)

Without any such meaning, the practice becomes “quite uninteresting.” Therefore, creating or finding “a story” is an essential aspect of making interactions more meaningful. This constitutes an element of support for teachers who engage with children with minimal functioning and/or CCC.

CCC as a difficult reality

This theme describes experiences with children’s illnesses and the conditions of their disorders. The participants valued thinking about the children’s experiences with their own disease as well as how they experienced the disease as an observer. For example, teachers may experience a child’s disease progression, perhaps even leading to death. Such descriptions reveal unique concepts that emerge when working with severely ill children.

The conditions of disorders certainly affect functioning and create limitations for children. Those with severe conditions may need to live in the hospital for years. Given these factors, the participants strongly recognized their participatory limitations. One described some common environmental limitations and discussed how children may experience them:

They are children who spend all their time in a really small space [hospital room], in a similar [flow of time]. It’s summer vacation now, so I go to see them sometimes, but every day that they don’t come to school, they’re often asleep even when I go to see them, during the day. It’s hard to see anything but the world on their own bed. (…) They spend a lot of time alone. (P02, 6–10 years of experience with sick children)

As some CCC are progressive in nature, cases in which conditions worsen can be “the most difficult,” both for the teachers and children. In fact, teachers may avoid talking about the progressive nature of such diseases altogether ( Table 4, quotes 6 and 7). For example, one participant described their difficulty with a child who had begun to lose ambulation due to Duchenne muscular dystrophy (a genetic progressive muscular disorder) ( Table 4, quote 8). From the teacher’s perspective, the emotional impacts of disease progression were recognized as “tough” due to various emotional and behavioral issues. When children have life-threatening illnesses, teachers may even experience their death. In fact, several participants had experienced the death of children with CCC. Even when participants had relevant expertise, these cases were very difficult, often evoking negative emotions, psychological distress, and grief:

I knew that [the death] would happen; after all, there are severely ill children in the program, and several students have died since I came to the school. I don’t experience that kind of thing much at other schools. That’s what I don’t like about this school. I have to say goodbye [to children]. Well, it’s hard. (P10, 6–10 years of experience with sick children)

In addition to the medical condition itself, educational systems sometimes become barriers for teachers. Teachers make individualized educational plans for children; however, the educational practice with the children does not proceed as originally planned. Realization of the plan is often not possible. Sometimes, there are “a lot of days off,” and “things don’t go well in terms of their health.” Because variability of the functioning and disabilities changes the ways of interaction and communication, teachers are required to have different ways of interacting with each child ( Table 4, quote 9).

Table 4. Chronic complex condition as difficult reality.

Quote	Participant, Years of experience with sick children	Transcript	
6	P14, 6–10	“I think the most difficult thing to do is to see how much the children with muscular dystrophy know about their disease. Well, I’ve never been asked that question, but if I were asked, like, ‘What’s my disease?’ … Well, I wonder how I would answer that question.”	
7	P17, 1–5	“I am a little concerned about how much we should talk about the disease; well, if it is a child with muscular dystrophy, to what extent we should talk about the disease in accordance with their developmental stage. Yeah. In fact, I’ve never told him about his illness, even though it’s been months since I’ve seen him face-to-face …”	
8	P15, ≥11	“In the case of the child with progressive disease, there were tremendous symptoms of shock, even at the earlier stages. When a child with Duchenne muscular dystrophy cannot walk, the symptoms of shock are so great that the child inevitably becomes violent, and stress is released …”	
9	P07, 1–5	“Children with multiple disabilities have different ways of interacting with each other, different goals, and different purposes, or rather, different ways of communicating, so it is difficult to do everything at the same time. Even when we do activities together, we all have different ways of interacting with each other.”	
10	P21, 6–10	“Medical staff’s ideas about care and welfare were different from those of them in education, and I think that they valued different aspects based on [the] medical care system. It took me a long time to understand the medical side of things.”	

Cooperation with medical care was considered another major environmental barrier. Although different professionals or organizations must collaborate to support children with CCC, cooperative engagement between medical professionals was perceived as challenging: “Really, I think it is a bit of a difficult issue as to what real cooperation is. I can’t say they are cooperating, but I can’t say they aren’t” (P11, 6–10 years of experience with sick children). Meanwhile, differences in language, attitudes, and values can hinder interprofessional cooperation ( Table 4, quote 10).

Widening experience for the future

This theme describes beliefs about children’s experiences in their daily lives, special education schools, and hospitals. Because of various environmental and hospital-related restrictions, the participants valued the idea of widening their experiences with children with CCC. For such children, essential developmental components included time and interaction with other children, enhanced motivation to interact with surrounding individuals, and improved communication.

A central concept of this theme is rooted in the fact that most children with severe CCC spend “most of their time in the hospital” to receive inpatient treatment. As a result, the range of their experiences and activities tends to be limited. Although the participants eagerly tried to create opportunities for interactions with other people, such efforts were often difficult due to environmental limitations, including the hospitalization itself:

They don’t have a lot of opportunities to interact with people, and since they are basically one-on-one with the teacher, it’s hard for them to broaden their relationships with other people. I was thinking that it would be nice if I could do something to help them expand their relationships with others, such as students, [and] nurses at the hospital. (P20, 1–5 years of experience with sick children)

Opportunities to interact with peers were considered essential, and therefore encouraged ( Table 5, quote 11). The participants hoped to widen interactions with other children and facilitate interactions with surrounding adults, as each student was used to being accompanied by a teacher ( Table 5, quote 12). However, it is also important to note that adult-student relationships sometimes hindered children from behaving independently or spontaneously ( Table 5, quote 13). For that reason, the participants carefully made their attempts: “ [I tried] to help as much as possible, but sometimes, I also tried to wait until the patient was willing to move his/her hand as much as possible” (P09, 6–10 years of experience with sick children).

Table 5. Widening experience for the future.

Quote	Participant, Years of experience with sick children	Transcript	
11	P01, 1–5	“That child liked to interact with adults, as the adults were more likely to understand and talk to them. Nevertheless, we tried to make them talk to their peers of [the] same age as much as possible. If there were other sick children, I would have told them, for example, to help children who seemed to be having difficulty holding things … yes, I would have tried to encourage that child to build relationships.”	
12	P13, 6–10	“Since the classes are limited, it is difficult for them to interact with other children, and we have to visit them. So, in the second year, I arranged for him to visit the school and participate in activities with other students in the same grade … so, I wanted the students to work on various things by themselves, since they were paired with adults.”	
13	P21, 6–10	“I think that they have been protected by the relationship with their illness, and people around them took care of them … they spent a lot of time being cared for … and then, one day, they suddenly realized that they may lose initiative.”	

From the future-oriented perspective, teachers value continued developmental goals for children, but those with CCC often take longer to achieve them, in some cases years. One participant said: “ Sometimes it is the year to create a starting point, and other times it is the year when we have to produce an achievement” (P02, 6–10 years of experience with sick children). Even if the teacher cannot identify significant improvements in targeted behaviors or performances, some progress may still result in future developmental gains for children with severe CCC. In the long-term context, such perceptions may support teachers who engage with these children.

Priority for interacting with children

This theme describes beliefs about interactions and relationships with children with CCC. We also identified two subthemes. The first is “ relationship as a basis for interacting with children,” referring to the belief that a positive child-teacher relationship creates a fundamental basis for meaningful interactions and educational practices. The second is “ child’s life after leaving the school/hospital,” referring to the idea that the supportive relationship will end once the child graduates from school or is discharged from the hospital.

Relationship as a basis for interacting with children

Since relationships are viewed as a critical basis for interaction and communication, the participants valued the process of building them with children with CCC “ rather than teaching any classes first.” Given that illness directly affects the lives of these children, one participant pointed out the importance of giving them time to adapt to life in the hospital ( Table 6, quote 14), especially because this environment often increases anxiety.

Many hospitalized children have a range of conditions that require inpatient treatment. Thus, facing medical difficulties is also a critical aspect of building trusting relationships with those who have severe conditions. For children with life-threatening diseases such as cancer, teachers sometimes face suffering, but also share hopes, feelings, and emotions. While this was discussed as a particularly “ hard and painful” experience ( Table 6, quote 15), the participants continued to believe in the meaning of teachers maintaining their presence with children and working toward supportive relationships.

Table 6. Priority for interacting with children.

Quote	Participant, Years of experience with sick children	Transcript	
14	P13, 6–10	“I think that … when a person becomes ill, it means that they can no longer do the things they used to normally do in their daily lives, so the mental part of it is something that we have to take into consideration. I think. Little by little, as we spend time in a lightly relaxed manner, gradually, you know, that they get used to us.”	
15	P15, ≥11	“When the child was awake [and conscious], I would let the child do whatever he or she wanted to do until the end. In that sense, [teachers] are there to empathize with that state of the child and encourage and support what they want to do. In most cases, even just to let them know that the teacher is there, next to the bed, you may spend more time holding hands; to let them know that they are not alone. I was conscious to teach in a way that allowed me to convey such messages. So, it was common to see teachers crying for a while after returning to the staff room from the sickroom. After all, these are things that are hard and painful.”	
16	P04, 1-5	“[Being sick], it’s hard things … hmmm. Would be nice if the illness could be cured. The most important thing is that, you know, I want them to get well and go home. I want them to do well at the local school where they were enrolled.”	

Child’s life after leaving the school/hospital

The children were also seen as having life in future contexts. As most were enrolled at schools for hospitalized children, their attendance was not considered firm. Some remained for very short periods (e.g., two to several weeks), while others stayed much longer (e.g., six months to multiple years). As teachers are therefore given limited time to involve themselves with these children, they tend to think about their lives after school or the hospital. One participant said: “ I guess the present situation is that temporary, a place to come” (P08, 6–10 years of experience with sick children). In this sense, the children were viewed as going away for a short period of time, in contrast to schools where they would be expected to remain until graduation. According to another participant, continued relationships are associated with medical conditions that do not sufficiently improve for hospital discharge. Thus, leaving the school and ending the relationship implies that the child’s condition has improved ( Table 6, quote 16).

The concept of life after leaving school also contextualized a range of experiences outside the school setting. Both at the school for sick children and in the hospital, conditions were well-understood by teachers and other professionals, but efforts were often required to avoid their recurrence after leaving. One participant said: “ Even though I am getting older and have been a teacher for a long time, I still have concerns about where doing this will lead [in the child’s future]” (P11, 6–10 years of experience with sick children). In this regard, even experienced teachers may have difficulty predicting children’s long-term needs and incorporating them into their educational practices.

Discussion

Focusing on areas of interaction and communication, this study investigated current perceptions, experiences, and educational challenges encountered by special education teachers who work with children with CCC in Japan. We identified four main themes, including “searching for the meaning,” “CCC as a difficult reality,” “widening experience for the future,” and “priority for interacting with children,” each of which summarizes aspects that are relevant to schools for sick children in the Japanese context.

Meaning of interactions

This study focused on interactions and communications between teachers and children with CCC. The process of supporting sick children can generally act as a source of motivation and satisfaction for teachers ( Lopez & Corcoran, 2014; Małkowska-Szkutnik et al., 2021), but our results suggest that interactions with children with CCC often lead to difficulties, especially in cases involving severe or complex conditions. To ensure that communication is reciprocal, teacher must focus on careful communicative approaches and responses when working with children with severe disabilities ( Fylkesnes & Ytterhus, 2021). However, this process can be extremely difficult when children have severe limitations, as suggested in this study. In cases where children cannot or do not respond, teachers may find it very difficult to receive tangible feedback on their efforts. In their practices with these children, our participants questioned and searched for the meaning of both their involvement and the employed educational approach. In such cases, objective evaluations may help clarify the state and usefulness of those approaches ( Nozaki & Kawasumi, 2013). In the same instance, one may therefore find it useful to discuss the issue from a value perspective (i.e., finding meaning and value in educational practices).

A theoretical consideration rooted in phenomenological perspectives on subjectivity and objectivity may provide insight into interactions with children who have minimal functioning ( Evensen, 2021). One direction of interaction and communication was taken from the perspective that communication is a form of pure technique. This makes children’s expressions more accessible to unfamiliar individuals. In turn, the same perspective is important for sharing with other individuals who are involved with the child (e.g., medical professionals), as also described by our participants. Another direction is offered by the perspective that considers contextual impressions and relational/interactional stimuli ( Evensen, 2021), which entails a more subjective nature of perceptions and interpretations. In sum, professionals who work in special needs education should integrate objective and subjective perspectives during their interactions with children, especially when searching for meaning in their practices.

The challenge of CCC

CCC is a critical aspect that affects the challenges and difficulties encountered by special education teachers and their students. As several participants in this study described, teachers may experience cases in which the child mentally and physically collapses, perhaps leading to worsened health or death. Because they tend to have emotional involvement with these children, such relational aspects may lead to other challenging experiences ( Benigno & Fante, 2020; Hart & Garza, 2013; Małkowska-Szkutnik et al., 2021; Steinke et al., 2016). Teachers who witness physical and psychological pain in children may also incur psychological impacts due to their relational involvement. While developments in medical treatment have reduced the occurrence of such cases, they are still difficult for teachers to experience, and often characterize the educational practices they employ for sick children ( Hart & Garza, 2013). In these situations, teachers are required to be resilient and sufficiently cope with their emotional responses ( Benigno & Fante, 2020; Hart & Garza, 2013). To better position themselves for this, they may refer to professional experiences, train to improve coping strategies, and seek support from colleagues ( Małkowska-Szkutnik et al., 2021).

To widen the child’s experience, teachers may also need to improve their own skills. As discussed above, teachers must adopt particular values or philosophies in their educational practices ( Hillel Lavian, 2015). Sharing beliefs relevant to the support of children and altering their own teaching values ( Soejima et al., 2020) may support emotional adaptation and enhance their professional capacity. In the absence of these elements, the process of educating students with complex needs may evoke emotional responses in teachers, potentially leading to emotional fatigue and burnout ( Hillel Lavian, 2015).

Unfortunately, a validated program for improving interaction with CCC for special education teachers is not widely available. Self-determination theory, a theory of human motivation that has been applied across research fields, posits three basic psychological needs as being necessary for psychological health and well-being: autonomy, competence, and relatedness ( Deci et al., 1980, 2017; Ryan & Deci, 2020). Based on this framework, one study reported that teachers experiencing higher relatedness with students engaged more in work and show less emotional exhaustion ( Klassen et al., 2012). Although there are limitations to the application of self-determination theory in special education, it may be useful to explore the satisfaction or frustration of teachers’ basic psychological needs based on this theoretical framework devising support measures.

In Japan, efforts to accumulate professional experience and improve self-efficacy are urgently needed in special education for sick children, as teachers currently have limited experience in this field ( Nagae, 2016; Takeda & Kasahara, 2001). In addition to general training for health disorders, specific training is required for some conditions, including rare genetic diseases and those associated with severe functional limitations ( Garvey et al., 2020).

Challenges in educational practice

Although peer interactions are essential features in educational practice, children at hospital-based schools tend to have limited opportunities for this. Meanwhile, environmental restrictions create educational issues ( Knauer et al., 2015). In this study, teachers believed it was important for students to have opportunities to be with or interact with other children. Indeed, research has shown that opportunities for peer interactions are important in child-child interactions, even if their disabilities are severe and multiple in nature, as this may increase spontaneous attention or approaches toward other children ( Nijs et al., 2016). At the same time, these interactions are expected to widen the experiences of children and facilitate their relational and emotional development ( Buysse & Bailey, 2016; Justice et al., 2014). Despite the various environmental limitations, teachers should therefore help hospitalized children engage in peer interactions and value activities that widen the potential for social relationships.

Coordination with other professionals is a long-standing issue in special needs education for sick children. While interdisciplinary communication and cross-organizational relationships, particularly with medical professionals, are emphasized in literature, this is often a challenging practice at schools in many countries ( Ballard & Dymond, 2018; Małkowska-Szkutnik et al., 2021; McClanahan & Weismuller, 2015; Pufpaff et al., 2015). According to reports, the lack of a collaborative process is partly due to insufficient time for collaboration and inadequate interprofessional communication ( Garvey et al., 2020). Moreover, cooperative engagements between individuals in different professional roles often lead to conflict, and are influenced by divergent opinions, leadership, and counseling abilities ( Weiss et al., 2018). These issues should be discussed and negotiated based on the expectations and needs of stakeholders. Earlier education programs for interprofessional collaboration may also facilitate the development of a foundation for accepting and balancing the weakness and strengths of each professional.

Implications for practice

Developments in communications technology may support the objective evaluation of children with profound disabilities. While some technologies help us communicate and interplay with children, the actual degree of technology use is influenced by whether the teacher perceives its value in special needs education ( Anderson & Putman, 2020). Therefore, it is still important to assess their values on how and what is used, as well as how the interactions are performed.

As discussed above, satisfaction or frustration of basic psychological needs (i.e., autonomy, competence, and relatedness) may be essential factors in understanding the experience of teachers and for supervisors to provide support ( Moè et al., 2022; Ryan & Deci, 2020). In addition, continuous education for various learning approaches may stimulate the skills and creativity of teachers in the context of individualized and differentiated teaching ( Weiss et al., 2018). To develop expertise in education for seriously ill children, this emphasizes the need to continue accumulating experience in the field. In this regard, seasoned professionals may serve as role models to help teachers with limited experience ( Soejima et al., 2020; Takeda & Kasahara, 2001).

Limitations

This study also had some limitations. First, the range of children’s characteristics may strongly affect the difficulty experienced by special education teachers. As we did not find significant differences by the years of experience with children with CCC, the index may not be the best measure for capturing teacher’s abilities or depths of experiential knowledge. Several of our participants experienced educational practices with children with profound disabilities (e.g., a disorder of consciousness), while others experienced relatively acute conditions. In this regard, the characteristics of disorders and/or functioning may have affected the findings. A more focused approach among a more targeted population may reveal additional context-dependent issues. This issue may be also related to the method by which the teachers were recruited. Since the participants were selected by school principals or a senior teacher, the sample of this study might be biased to teachers who were likely to be more capable. Inclusion of participants with wider experience and capabilities may expand the range of their experiences. Second, we did not include the parents of children with CCC. Because interactions are based on phenomena constructed by two or more individuals, the involvement of individuals in these positions may reveal a more complex nature. It may also be important to consider that discrepancies exist between children, parents, and teachers ( Maciver et al., 2019; O’Connor et al., 2016). Third, the transferability of this study may be limited in certain conditions. As the education systems for children with CCC and teacher training may differ between countries, the experiences of teachers may vary by location. However, the core themes identified in this study may be similar in other settings (e.g., difficulty interpreting limited responses from children and facing difficult conditions). Additionally, future comparisons between other countries or meta-synthesis of studies could yield meaningful insights into the current findings. Despite these limitations, this study provides valuable insight into the conditions experienced by teachers working in education for children with CCC.

Conclusion

This study conducted interviews with Japanese special education teachers to investigate the qualitative aspects of experiences with children with severe CCC. In sum, our findings suggest that teaching beliefs and values are strongly connected with actual practice. At the same time, severe functional limitations in children often lead to major challenges when professionals attempt to find meaning in interactions between teachers and children with CCC. This study may clarify important challenges and experiences encountered by special education teachers who work with these children.

Acknowledgements

The authors would like to thank the participants of this study.

Data availability

Underlying data

The raw transcripts from the interviews are not publicly available to protect participants’ privacy. Excerpts of the transcripts were included in the article. Transcripts in Japanese (the original language of the interview) are available from the corresponding author upon reasonable request at fjinoh@kokoro.med.osaka-u.ac.jp. Contact details, aims to use the transcripts, and data security management will be required.

OSF: Interactions between teachers and children with CCC. https://www.doi.org/10.17605/OSF.IO/WQNFV ( Fujino, 2022).

This project contains the following underlying data: - Participant_demographic.csv

Extended data

This project contains the following extended data: - Interview_guide.pdf

Reporting guidelines

OSF: Interactions between teachers and children with CCC. https://www.doi.org/10.17605/OSF.IO/WQNFV ( Fujino, 2022). - SRQR_checklist.pdf

Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).

10.5256/f1000research.166794.r281458
Reviewer response for version 3
Koto Yuta 1Referee https://orcid.org/0000-0003-4314-4955

1 Faculty of Nursing, Graduate School of Nursing, Kansai Medical University, Osaka, Japan
18 9 2024 Copyright: © 2024 Koto Y
2024
https://creativecommons.org/licenses/by/4.0/ This is an open access peer review report distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Version 3recommendationapprove
Thank you for your modification. I confirmed that no further revisions were necessary.

Is the work clearly and accurately presented and does it cite the current literature?

Yes

If applicable, is the statistical analysis and its interpretation appropriate?

Not applicable

Are all the source data underlying the results available to ensure full reproducibility?

Partly

Is the study design appropriate and is the work technically sound?

Partly

Are the conclusions drawn adequately supported by the results?

Partly

Are sufficient details of methods and analysis provided to allow replication by others?

Partly

Reviewer Expertise:

Nursing; Disabilities

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

10.5256/f1000research.166794.r281460
Reviewer response for version 3
Moè Angelica 1Referee
1 University of Padova, Padua, Italy
23 5 2024 Copyright: © 2024 Moè A
2024
https://creativecommons.org/licenses/by/4.0/ This is an open access peer review report distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Version 3recommendationapprove-with-reservations
The AA improved the Introduction by adding more recent quotations. However the novelties of the research should be emphasized more. Hence I would suggest

1) to stress more the novelty of your research

2) to provide explicit predictions based on the literature gaps 

Then, in the Discussion

3) I would emphasize more the role played by teacher enthusiasm in favoring positive relationships and being supportive (e.g., Moè & Katz, 2022 [Ref 1])

Is the work clearly and accurately presented and does it cite the current literature?

Partly

If applicable, is the statistical analysis and its interpretation appropriate?

I cannot comment. A qualified statistician is required.

Are all the source data underlying the results available to ensure full reproducibility?

Partly

Is the study design appropriate and is the work technically sound?

Yes

Are the conclusions drawn adequately supported by the results?

Partly

Are sufficient details of methods and analysis provided to allow replication by others?

Yes

Reviewer Expertise:

Teacher motivation and well-being

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

10.5256/f1000research.159878.r269182
Reviewer response for version 2
Koto Yuta 1Referee https://orcid.org/0000-0003-4314-4955

1 Faculty of Nursing, Graduate School of Nursing, Kansai Medical University, Osaka, Japan
8 5 2024 Copyright: © 2024 Koto Y
2024
https://creativecommons.org/licenses/by/4.0/ This is an open access peer review report distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Version 2recommendationapprove-with-reservations
General comments

This study identifies the experiences and challenges of teachers involved in the education of children with chronic illnesses and disabilities. The results are valuable in an area where there is a lack of accumulated knowledge. Another strength of this paper is that it draws information from multiple facilities and regions. The revisions have already been made based on comments from two reviewers, and a certain level of quality has been maintained. However, I believe that additional information on trustworthiness would be needed to ensure the rigor of the study.

Recommendation for revision Background. MEXT2018 is cited as the current status of CCC children in Japan, but I don't think it is appropriate. At least, the data of 20,000 children cannot be referenced.

Method Participants. The first inclusion criterion is written as sick children and/or children with CCC. Does this mean that teachers with experience only with sick children in general, not CCC, would be included at planning phase?

Method Participants. The authors indicate that teachers with minimal experience were excluded, but what specific criteria were used to define minimal experience? Was it the length of experience or the number of children in their charge?

Procedure. The authors stated that they conducted semi-structured interviews and developed an interview guide. However, they also state that they were not used. In other words, it is unclear whether the authors conducted unstructured or semi-structured interviews.

Data analysis. The characteristics of the first, second, and third authors are described. This is an important matter for the trustworthiness of qualitative research. However, one research assistant also participated in the conduct of the interviews. Is this research assistant similar to the characteristics of the first and third authors? Differences in experience in data collection would affect rigor.

Results. In the analysis section, the authors note that they investigated differences based on the participant's years of experience. The results are written along four themes, but what were the results obtained from the different years of experience?

Is the work clearly and accurately presented and does it cite the current literature?

Yes

If applicable, is the statistical analysis and its interpretation appropriate?

Not applicable

Are all the source data underlying the results available to ensure full reproducibility?

Partly

Is the study design appropriate and is the work technically sound?

Partly

Are the conclusions drawn adequately supported by the results?

Partly

Are sufficient details of methods and analysis provided to allow replication by others?

Partly

Reviewer Expertise:

Nursing; Disabilities

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

Fujino Haruo Osaka University, Japan

19 5 2024 Response to the reviewers

General comments

This study identifies the experiences and challenges of teachers involved in the education of children with chronic illnesses and disabilities. The results are valuable in an area where there is a lack of accumulated knowledge. Another strength of this paper is that it draws information from multiple facilities and regions. The revisions have already been made based on comments from two reviewers, and a certain level of quality has been maintained. However, I believe that additional information on trustworthiness would be needed to ensure the rigor of the study.

Response:

Thank you for helpful feedback on our manuscript. Based on the reviewers’ comments, we have revised the manuscript. Please refer to our responses for the specific comments.

Recommendation for revision

1.           Background. MEXT2018 is cited as the current status of CCC children in Japan, but I don't think it is appropriate. At least, the data of 20,000 children cannot be referenced.

Response:

In the introduction section, a sentence citing “MEXT: Special needs education in Japan, 2018” states as follows: In Japan, relevant data show that around 20,000 students (~0.002% of children) with health disorders receive special education in accordance with their special health care needs ( MEXT, 2018).

This sentence provides information about the number of students with health disorders who received special education, not the number of students with CCC. As the reviewer described, the number of children with CCC is not currently available in Japan. Therefore, the following sentence in the section states as follows: Although many children with severe CCC who receive inpatient treatment appear to attend special needs schools, educational statistics on this issue are currently unavailable in Japan.

2.           Method Participants. The first inclusion criterion is written as sick children and/or children with CCC. Does this mean that teachers with experience only with sick children in general, not CCC, would be included at planning phase?

Response:

Thank you for pointing it out. Actually, participants were recruited if they had experience teaching “sick children”, because detailed experience about students with CCC was able to be confirmed only after a detailed interview for their teaching experiences. Therefore, we modified the sentence:

In Participants section,

The participants were recruited based on their experience in teaching sick children (i.e., health disorders). We set the following inclusion criteria: 1) experience teaching children with CCC and 2) work in special needs schools for health disorders. The first criterion was confirmed after the interview because we obtained detailed information on their teaching experience in the interviews.

All 21 teachers participated in this study and were confirmed that they had experience in teaching children with CCC.

3.           Method Participants. The authors indicate that teachers with minimal experience were excluded, but what specific criteria were used to define minimal experience? Was it the length of experience or the number of children in their charge?

Response:

Thank you for your clarification on the minimal experience of the teachers. The experience was defined based on the duration, i.e., four months (a school term in Japan).

Based on the reviewer’s comment, we clarified the information.

In Participants section,

Teachers with minimal experience in this area (i.e., less than four months) were not recruited.

4.           Procedure. The authors stated that they conducted semi-structured interviews and developed an interview guide. However, they also state that they were not used. In other words, it is unclear whether the authors conducted unstructured or semi-structured interviews.

Response:

Sorry for your confusion. In response to the reviewer’s comment, “it” indicated a pre-testing or pilot interview to evaluate the interview guide. Unfortunately, the sentence was accidentally deleted by copy-editing. We corrected the sentence as originally described.

In Procedures section,

“A pilot-testing of the guide was not performed for this study.”

5.           Data analysis. The characteristics of the first, second, and third authors are described. This is an important matter for the trustworthiness of qualitative research. However, one research assistant also participated in the conduct of the interviews. Is this research assistant similar to the characteristics of the first and third authors? Differences in experience in data collection would affect rigor.

Response:

Another interviewer was a special education teacher similar to the third author. Based on the reviewer’s suggestion, we have added the following:

In Procedures section,

The interviewers discussed the research aim, topic, educational systems, and possible challenges when teaching children with CCC several times. The first author provided training (about 4.5 hours) for the current study to maintain the quality of the interviews.

6.           Results. In the analysis section, the authors note that they investigated differences based on the participant's years of experience. The results are written along four themes, but what were the results obtained from the different years of experience?

Response:

We have described that “we did not identify clear relationships between the thematic contents and number of years educating children with CCC.” Although we cannot exclude the possible association between the themes and experience years in teaching, the number of years may not be the best index for capturing teachers’ abilities or depths of experiential knowledge.

We have now revised the limitations section as follows: 

As we did not find significant differences by the years of experience with children with CCC, the index may not be the best measure for capturing teacher’s abilities or depths of experiential knowledge.

10.5256/f1000research.141784.r209534
Reviewer response for version 1
Moè Angelica 1Referee
1 University of Padova, Padua, Italy
27 11 2023 Copyright: © 2023 Moè A
2023
https://creativecommons.org/licenses/by/4.0/ This is an open access peer review report distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Version 1recommendationapprove-with-reservations
The MS presents a study conducted with special education teachers to catch their experiences with children with severe complex chronic conditions (CCC).

The topic is interesting and it deserves investigation for its practical implications and the paucity of studies on it.

Hence. I am positive about indexing pending the revisions listed below.

Background. I would report more recent data on the prevalence of the diseases. They refer to 20 years ago: Beers et al., (2003). Overall, I would refer mostly on recent literature. Maybe specific reference to similar studies should be made more explicit by adding texts (as it is now it appears pretty short).

Discussion. I would report in more detail which programs or interventions suggested for helping teachers in facing the burdens due to interacting with CCC children.

Generalization: They found those results in a specific context. Do the AA think they can be applied worldwide?

Overall. I would refer to a specific theory. Maybe the SDT theory regarding the autonomy-support vs. control could help (e.g., Ryan & Deci, 2020) because it states different supportive or less functional modalities (e.g., Moè et al., 2022). Referring to self-efficacy could be a further option (e.g., Kasalak & Dagyar, 2020).

Suggested references:

Kasalak, G., & Dagyar, M. (2020). The relationship between teacher self-efficacy and teacher job satisfaction: A meta-analysis of the teaching and learning international survey (TALIS). Educational Sciences: Theory and Practice, 20(3), 16-33.

Moè, A., Consiglio, P., & Katz, I. (2022). Exploring the circumplex model of motivating and demotivating teaching styles: The role of teacher need satisfaction and need frustration. Teaching and Teacher Education, 118, 103823.

Ryan, R. M., & Deci, E. L. (2020). Intrinsic and extrinsic motivation from a self determination theory perspective: Definitions, theory, practices, and future directions. Contemporary Educational Psychology, 101860.

I wish the AA the best with their research!

Is the work clearly and accurately presented and does it cite the current literature?

Partly

If applicable, is the statistical analysis and its interpretation appropriate?

I cannot comment. A qualified statistician is required.

Are all the source data underlying the results available to ensure full reproducibility?

Partly

Is the study design appropriate and is the work technically sound?

Yes

Are the conclusions drawn adequately supported by the results?

Partly

Are sufficient details of methods and analysis provided to allow replication by others?

Yes

Reviewer Expertise:

Teacher motivation and well-being

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

Fujino Haruo Osaka University, Japan

12 12 2023 Reviewer Report

27 Nov 2023 | for Version 1

Angelica Moè, University of Padova, Padua, Italy

APPROVED WITH RESERVATIONS

General comments:

The MS presents a study conducted with special education teachers to catch their experiences with children with severe complex chronic conditions (CCC).

The topic is interesting and it deserves investigation for its practical implications and the paucity of studies on it.

Hence. I am positive about indexing pending the revisions listed below.

Response:

We appreciate your encouraging comments on our manuscript.

1. Background. I would report more recent data on the prevalence of the diseases. They refer to 20 years ago: Beers et al., (2003). Overall, I would refer mostly on recent literature. Maybe specific reference to similar studies should be made more explicit by adding texts (as it is now it appears pretty short).

Response:

Based on the reviewer’s suggestion, we added a recent report from the United States (Ghandour et al., 2022).

In Background section,

The number of children with complex medical conditions has increased in recent decades. However, the rate of prevalence varies based on the definition and study context, ranging from 5% to 30% ( Beers et al., 2003). A recent report showed that 18.8% of children in the United States had special health care needs ( Ghandour et al., 2022).

2. Discussion. I would report in more detail which programs or interventions suggested for helping teachers in facing the burdens due to interacting with CCC children.

Response:

Unfortunately, we could not find any specific program for teachers of children with CCC. Based on Comments 2 and 4, we have added a discussion of the potential contributions of motivating their practice.

In Discussion section,

Unfortunately, a validated program for improving interaction with CCC for special education teachers is not widely available. Self-determination theory, a theory of human motivation that has been applied across research fields, posits three basic psychological needs as being necessary for psychological health and well-being: autonomy, competence, and relatedness ( Deci and Ryan, 1980; Deci et al., 2017; Ryan & Deci, 2020). Based on this framework, one study reported that teachers experiencing higher relatedness with students engaged more in work and show less emotional exhaustion ( Klassen et al., 2012). Although there are limitations to the application of self-determination theory in special education, it may be useful to explore the satisfaction or frustration of teachers’ basic psychological needs based on this theoretical framework devising support measures.

3. Generalization: They found those results in a specific context. Do the AA think they can be applied worldwide?

Response:

The findings are based on interviews with Japanese teachers within a certain educational context; therefore, the generalizability of the findings is more context-dependent, rather than being generalizable. However, future comparisons with other cultures or contexts may provide meaningful insights into the current findings.

We have clarified the context in the summary of the results (Discussion section) and Conclusions, and discussed it in the Limitations section.

In Discussion section,

Focusing on areas of interaction and communication, this study investigated current perceptions, experiences, and educational challenges encountered by special education teachers who work with children with CCC in Japan.

In Limitations section,

Additionally, future comparisons between other countries or meta-synthesis of studies could yield meaningful insights into the current findings.

In Conclusion section,

This study conducted interviews with Japanese special education teachers to investigate the qualitative aspects of experiences with children with severe CCC.

4. Overall. I would refer to a specific theory. Maybe the SDT theory regarding the autonomy-support vs. control could help (e.g., Ryan & Deci, 2020) because it states different supportive or less functional modalities (e.g., Moè et al., 2022). Referring to self-efficacy could be a further option (e.g., Kasalak & Dagyar, 2020).

Suggested references:

Kasalak, G., & Dagyar, M. (2020). The relationship between teacher self-efficacy and teacher job satisfaction: A meta-analysis of the teaching and learning international survey (TALIS). Educational Sciences: Theory and Practice, 20(3), 16-33.

Moè, A., Consiglio, P., & Katz, I. (2022). Exploring the circumplex model of motivating and demotivating teaching styles: The role of teacher need satisfaction and need frustration. Teaching and Teacher Education, 118, 103823.

Ryan, R. M., & Deci, E. L. (2020). Intrinsic and extrinsic motivation from a self determination theory perspective: Definitions, theory, practices, and future directions. Contemporary Educational Psychology, 101860.

I wish the AA the best with their research!

Response:

Thank you for the suggestion. Based on the reviewer’s comment, we have discussed the findings with reference to self-determination theory.

In Discussion section,

Unfortunately, a validated program for improving interaction with CCC for special education teachers is not widely available. Self-determination theory, a theory of human motivation that has been applied across research fields, posits three basic psychological needs as being necessary for psychological health and well-being: autonomy, competence, and relatedness ( Deci and Ryan, 1980; Deci et al., 2017; Ryan & Deci, 2020). Based on this framework, one study reported that teachers experiencing higher relatedness with students engaged more in work and show less emotional exhaustion ( Klassen et al., 2012). Although there are limitations to the application of self-determination theory in special education, it may be useful to explore the satisfaction or frustration of teachers’ basic psychological needs based on this theoretical framework devising support measures.

In Implication for practice section,

As discussed above, satisfaction or frustration of basic psychological needs (i.e., autonomy, competence, and relatedness) may be essential factors in understanding the experience of teachers and for supervisors to provide support ( Moè et al., 2022; Ryan & Deci, 2020).

10.5256/f1000research.141784.r209533
Reviewer response for version 1
Diaz-Castro Lina 1Referee
1 National Institute of Psychiatry Ramón de la Fuente Muñiz, Mexico City, Mexico
9 10 2023 Copyright: © 2023 Diaz-Castro L
2023
https://creativecommons.org/licenses/by/4.0/ This is an open access peer review report distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Version 1recommendationapprove
Dear Author,

I am sending you the review of the article "Experiences and Challenges of Special Education Teachers in Supporting Children with Complex Chronic Conditions: A Qualitative Study".

General comments:

The study investigates the experiences and challenges faced by special education teachers in Japan when providing support to children with complex chronic conditions (CCC). It employs a qualitative research design involving semi-structured face-to-face interviews with 21 special education teachers who work with sick children. The study identifies four main themes: "searching for the meaning," "CCC as a difficult reality," "widening experience for the future," and "priority for interacting with children." These themes reveal the complexities of teacher-child interactions, the unique challenges posed by CCC, the importance of widening children's experiences, and the significance of building positive relationships with these children.

Replicability and Generalizability:

Replicability: The study provides a detailed description of its methods, including data collection and analysis, which makes it replicable for researchers interested in conducting similar qualitative studies.

Generalizability: The generalizability of the study's findings may be limited by the specific context of Japanese special education schools for children with CCC. Further research in diverse settings and with larger sample sizes would enhance the generalizability of the findings.

In summary, the article presents valuable insights into the experiences and challenges faced by special education teachers when working with children with CCC. To enhance the scientific soundness of the article, the authors should consider the following:

  Improve the clarity of certain sections, particularly those related to the thematic analysis process.

Clarify details of the data analysis, including the coding process.

Consider making the source data underlying the results available for reproducibility.

Encourage further research in diverse settings to enhance the generalizability of findings.

The study contributes to the understanding of teacher-child interactions in the context of special education for children with complex chronic conditions and offers important implications for teacher training and support in this field.

Specific comments

Is the work clearly and accurately presented and does it cite the current literature?

This work demonstrates clarity, accuracy, and appropriate citation of relevant literature up to my knowledge cutoff date. The article reads well and maintains a logical flow. However, consider using subheadings within sections to break up the text further and improve the readability.

Is the study design appropriate and is the work technically sound?

The study's design and methodology appear to be well-suited to its research objectives and maintain technical soundness, based on the provided information.

Are sufficient details of methods and analysis provided to allow replication by others?

In my opinion, additional information is typically required in a research study to facilitate replication:

Sampling Details: While the study mentions inclusion criteria for participants, it's helpful to provide more information about how participants were selected, and recruited, and any potential biases in the selection process.

Interview Guide: The study mentions the use of an interview guide but does not provide the full list of questions or prompts included in the guide. Sharing the complete guide would help others understand how the interviews were conducted and structured.

Data Collection Procedures: Detailed information on the interview process, including how interviews were scheduled, conducted, and audio-recorded, is essential for replication. Additionally, information on any piloting or pre-testing of the interview guide should be included.

Data Analysis: While the study mentions thematic analysis and the use of MAXQDA software, it lacks a step-by-step description of the analytical process. Replicators would typically need to know how codes were generated, how themes were identified, and the criteria used for theme selection.

If applicable, is the statistical analysis and its interpretation appropriate?

The study does not mention the use of statistical analysis.

The description of the thematic analysis process is well-detailed, and it's good that the authors followed an inductive approach without preconceived codes. Mentioning the software (MAXQDA) used for data analysis is helpful. Authors might want to provide a brief explanation of the number of coders involved and their qualifications to ensure the rigor of the analysis.

Translation: The authors mentioned that excerpts were translated into English for presentation in the article. It's important to acknowledge that translation can introduce some degree of interpretation bias. Mentioning that a qualified translator, preferably bilingual, was involved in the process can help address potential concerns about translation accuracy.

Authors might want to provide a bit more detail about the roles each author played in the research process, especially in data analysis.

Are all the source data underlying the results available to ensure full reproducibility?

The provided text does not indicate whether the source data underlying the results of this study are available for full reproducibility. In many cases, qualitative research studies may not make their raw data, such as interview transcripts, publicly available to protect the privacy and confidentiality of study participants.

However, it is common practice in qualitative research to provide detailed descriptions of the research methods, including the process of data collection (interviews in this case), coding procedures, and thematic analysis, so that other researchers can understand how the results were derived and potentially replicate the study using their own data if desired.

Are the conclusions drawn adequately supported by the results?

The conclusions drawn in the study appear to be adequately supported by the results and findings presented. The study conducted interviews with special education teachers and identified key themes related to their experiences and challenges when working with children with complex chronic conditions (CCC).

Is the work clearly and accurately presented and does it cite the current literature?

Yes

If applicable, is the statistical analysis and its interpretation appropriate?

Not applicable

Are all the source data underlying the results available to ensure full reproducibility?

Partly

Is the study design appropriate and is the work technically sound?

Yes

Are the conclusions drawn adequately supported by the results?

Yes

Are sufficient details of methods and analysis provided to allow replication by others?

Partly

Reviewer Expertise:

Mental Disorderds. /  Public Health. / Research in Health Systems.

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

Fujino Haruo Osaka University, Japan

12 12 2023 Reviewer Report

09 Oct 2023 | for Version 1

Lina Diaz-Castro, National Institute of Psychiatry Ramón de la Fuente Muñiz, Mexico City, Mexico

Dear Author,

I am sending you the review of the article "Experiences and Challenges of Special Education Teachers in Supporting Children with Complex Chronic Conditions: A Qualitative Study".

General comments:

The study investigates the experiences and challenges faced by special education teachers in Japan when providing support to children with complex chronic conditions (CCC). It employs a qualitative research design involving semi-structured face-to-face interviews with 21 special education teachers who work with sick children. The study identifies four main themes: "searching for the meaning," "CCC as a difficult reality," "widening experience for the future," and "priority for interacting with children." These themes reveal the complexities of teacher-child interactions, the unique challenges posed by CCC, the importance of widening children's experiences, and the significance of building positive relationships with these children.

Replicability and Generalizability:

Replicability: The study provides a detailed description of its methods, including data collection and analysis, which makes it replicable for researchers interested in conducting similar qualitative studies.

Generalizability: The generalizability of the study's findings may be limited by the specific context of Japanese special education schools for children with CCC. Further research in diverse settings and with larger sample sizes would enhance the generalizability of the findings.

In summary, the article presents valuable insights into the experiences and challenges faced by special education teachers when working with children with CCC. To enhance the scientific soundness of the article, the authors should consider the following:

Improve the clarity of certain sections, particularly those related to the thematic analysis process.

Clarify details of the data analysis, including the coding process.

Consider making the source data underlying the results available for reproducibility.

Encourage further research in diverse settings to enhance the generalizability of findings.

The study contributes to the understanding of teacher-child interactions in the context of special education for children with complex chronic conditions and offers important implications for teacher training and support in this field.

Response:

Thank you for considering our manuscript. Based on the reviewers’ comments, we have revised the manuscript. Please refer to our responses for the specific comments.

Specific comments

Is the work clearly and accurately presented and does it cite the current literature?

1. This work demonstrates clarity, accuracy, and appropriate citation of relevant literature up to my knowledge cutoff date. The article reads well and maintains a logical flow. However, consider using subheadings within sections to break up the text further and improve the readability.

Response:

Thank you for your suggestions. We have added subheadings in the manuscript to improve readability.

Is the study design appropriate and is the work technically sound?

2. The study's design and methodology appear to be well-suited to its research objectives and maintain technical soundness, based on the provided information.

Response:

Thank you for your positive evaluation of our study.

Are sufficient details of methods and analysis provided to allow replication by others?

3. In my opinion, additional information is typically required in a research study to facilitate replication:

3-1. Sampling Details: While the study mentions inclusion criteria for participants, it's helpful to provide more information about how participants were selected, and recruited, and any potential biases in the selection process.

Response:

Based on the reviewer’s suggestion, we have included additional details in the Participants section and discussed potential biases in the Limitations section.

In Participants section,

The potential participant teachers were selected by the school principals or a senior teacher based on the teachers’ experience and backgrounds. Teachers with minimal experience in this area were excluded.

In Limitations section,

This issue may be also related to the method by which the teachers were recruited. Since the participants were selected by school principals or a senior teacher, the sample of this study might be biased to teachers who were likely to be more capable. Inclusion of participants with wider experience and capabilities may expand the rage of their experiences.

3-2. Interview Guide: The study mentions the use of an interview guide but does not provide the full list of questions or prompts included in the guide. Sharing the complete guide would help others understand how the interviews were conducted and structured.

Response

We have shared this information in the Extended Data section (OSF repository, https://www.doi.org/10.17605/OSF.IO/WQNFV).

3-3. Data Collection Procedures: Detailed information on the interview process, including how interviews were scheduled, conducted, and audio-recorded, is essential for replication. Additionally, information on any piloting or pre-testing of the interview guide should be included.

Response

We have included further details of these procedures. The interview guide was not pilot tested before the interview; it was developed by two of the authors, who have different professional backgrounds.

In Procedures section,

The interview-guide was developed by two researchers (first and third authors), who had different professions. However, it was not performed in this study. Although we used this guide to elicit experiential narratives, we also encouraged the participants to talk freely about any relevant views, ideas, experiences, and challenges.

3-3. Data Analysis: While the study mentions thematic analysis and the use of MAXQDA software, it lacks a step-by-step description of the analytical process. Replicators would typically need to know how codes were generated, how themes were identified, and the criteria used for theme selection.

Response:

Based on the reviewer’s comment, we included this information in the analysis section.

In Data analysis section,

Before the data were coded, impressions of the interview transcripts were discussed between the first and third authors. In the coding process, the authors tried to create codes that summarized the data meaning based on the research questions of this study. The first author coded the transcribed text, then discussed the coding with the second author. Because the codes were modified during this discussion, the first author re-coded the original text to confirm the data context. Only the first author coded all the transcripts based on the approach employed in thematic analysis ( Braun & Clarke, 2021; Clarke & Braun, 2013). The themes were developed by repeatedly reviewing the content of the code, creating tentative themes, comparing the theme to the code, and repeating the review to ensure that each theme reflected a central organizing concept ( Clarke & Braun, 2013).

If applicable, is the statistical analysis and its interpretation appropriate?

4. The study does not mention the use of statistical analysis.

The description of the thematic analysis process is well-detailed, and it's good that the authors followed an inductive approach without preconceived codes. Mentioning the software (MAXQDA) used for data analysis is helpful. Authors might want to provide a brief explanation of the number of coders involved and their qualifications to ensure the rigor of the analysis.

Response:

Thank you for your suggestions. Accordingly, we have added a short explanation of the coder and the approach of the thematic analysis in the Analysis section.

In Data analysis section,

Only the first author coded all the transcripts based on the approach employed in thematic analysis ( Braun & Clarke, 2021; Clarke & Braun, 2013).

5. Translation: The authors mentioned that excerpts were translated into English for presentation in the article. It's important to acknowledge that translation can introduce some degree of interpretation bias. Mentioning that a qualified translator, preferably bilingual, was involved in the process can help address potential concerns about translation accuracy.

Response:

We have added information about the translator in the manuscript.

In Data analysis section,

After completing the qualitative data analysis in Japanese (the original language of the data), the excerpts were translated into English for presentation in this article by a professional bilingual translator.

6. Authors might want to provide a bit more detail about the roles each author played in the research process, especially in data analysis.

Response:

We have clarified the roles of the authors in the data analysis section.

In Data analysis section,

Before the data were coded, impressions of the interview transcripts were discussed between the first and third authors. In the coding process, the authors tried to create codes that summarized the data meaning based on the research questions of this study. The first author coded the transcribed text, then discussed the coding with the second author. Because the codes were modified during this discussion, the first author re-coded the original text to confirm the data context. Only the first author coded all the transcripts based on the approach employed in thematic analysis ( Braun & Clarke, 2021; Clarke & Braun, 2013). The themes were developed by repeatedly reviewing the content of the code, creating tentative themes, comparing the theme to the code, and repeating the review to ensure that each theme reflected a central organizing concept ( Clarke & Braun, 2013).

Are all the source data underlying the results available to ensure full reproducibility?

7. The provided text does not indicate whether the source data underlying the results of this study are available for full reproducibility. In many cases, qualitative research studies may not make their raw data, such as interview transcripts, publicly available to protect the privacy and confidentiality of study participants.

However, it is common practice in qualitative research to provide detailed descriptions of the research methods, including the process of data collection (interviews in this case), coding procedures, and thematic analysis, so that other researchers can understand how the results were derived and potentially replicate the study using their own data if desired.

Response:

Thank you for your understanding. We have revised the section and added more detailed information in the Methods section. Please also refer to our responses to Comments 3-3, 4, and 6.

Are the conclusions drawn adequately supported by the results?

8. The conclusions drawn in the study appear to be adequately supported by the results and findings presented. The study conducted interviews with special education teachers and identified key themes related to their experiences and challenges when working with children with complex chronic conditions (CCC).

Response:

Thank you for your comment.

Competing interests: No competing interests were disclosed.

Competing interests: No competing interests were disclosed.

Competing interests: No competing interests were disclosed.

Competing interests: None.

Competing interests: No competing interests were disclosed.

Competing interests: I declare no competing interest.

Competing interests: No competing interests were disclosed.

Competing interests: I declare no competing interest.
==== Refs
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