Experiences about Reading and Writing Development Narrated by Students with Severe Speech and Physical Impairment

ABSTRACT

Earlier research shows an arrest in reading and writing development among 9–12-year-old students with severe speech and physical impairment, SSPI. This article explores what five students with SSPI who have reached beyond beginner’s phase without arrest in their literacy development have experienced as significant for their reading and writing development. The research design was explorative and case based. It contained researcher–participant longitudinal dialogues focusing on the students’ experiences of literacy learning. Computer assisted email interviews were used. A semi-structured interview manual guided each dialogue. With the use of augmentative and alternative communication (AAC) systems and assistive technology devices, the participants could read and write (with alphabetical print in Swedish) independently. The analysis revealed four themes of great importance for the students’ development of alphabetical print literacy skills: assistive technology use in writing and reading, continuity in long-term pedagogical relationships, mutual persistence in communication, and visions of nearer goals and future work life. The results are discussed in relation to the theoretical frameworks of self-efficacy and the capability approach.

KEYWORDS:

• Augmentative and alternative communication communication (AAC)
• capability approach
• reading
• self-efficacy
• severe speech and physical impairment (SSPI)
• writing

Introduction

Few children with severe speech and physical impairment (SSPI) learn to read and write, according to earlier research (Light & McNaughton, 1993; Sturm et al., 2006). Dahlgren Sandberg (2006) showed in a longitudinal study that these children’s literacy development stopped at the age of nine. She also found a decrease in IQ at the age of 12. Several studies have revealed that only a small proportion of classroom time is dedicated to literacy activities for this group of students. One reason seems to be a lack of confidence in supporting literacy learning for these students among educators, speech and language therapists, and parents (Dahlgren Sandberg, 1998; Fallon & Katz, 2008; Larsson, 2008; Light & McNaughton, 1993; Malmqvist, 2001; Pufpaff, 2008; Ruppar, Dymond, & Gaffney, 2011; Zascavage & Keefe, 2007). Such research findings indicate an underestimation of these students’ learning potential, which may lead to deprivation of students’ capabilities (Sen, 1992) and which has been associated with discrimination by Zascavage and Keefe (2004, p. 231):

The notion that literacy is unnecessary, lacking importance, and frivolous for students with SSPI, but important and meaningful for the able-bodied student population, is discriminatory and reflective of an ableist mindset.

The situation in Sweden is similar, according to Dahlgren Sandberg’s (1998) research. She studied literacy development among Swedish speaking students with SSPI, comparing the student group’s literacy activities with that of two other student groups (students with intellectual disability and without disability), and found that students with SSPI had considerably fewer literacy activities at school. Importantly, research has demonstrated the importance for students with SSPI to have at least the same proportion of learning activities in different literacy categories as their peers (Sturm et al., 2006). Light and McNaughton (2009) concluded that at least two hours of daily meaningful literacy activities are needed for these students’ literacy development.

Students with motor disabilities, many of them resembling the participants in the present study, were found in Malmqvist’s (2001) studies to have a considerable part of their education in a separate room together with a student assistant. They were also marginalised in other aspects, such as not being invited to participate in national subject tests. The argument that they were not able to participate often proved in follow-ups to be unfounded (Malmqvist, 2001). Other studies show that students with SSPI participate in educational assessments to a lesser degree than their peers and that their results are not always included in result presentations (Ahlgrim-Delzell, 2009). Systematic loss of data from students with SSPI in educational evaluations is problematic, given that assessment results are the basis for further educational planning (Koppenhaver, Foley, & Williams, 2009) and for distributing resources and educational support (Malmqvist, 2001). Furthermore, assessments have shown a considerable heterogeneity within the target group (Ferreira, Rönnberg, Gustafson, & Wengelin, 2007; Malmqvist, 2001). Ferreira et al. (2007, p. 245) found that ‘the population is heterogenous, and literacy skills often surprisingly occurred in individuals we did not believe had a cognitive profile to become future readers’, leading them to ask, ‘What is the explanation for this?’

Our review of research shows a paucity of pedagogical research studies focusing on students’ (with SSPI) own descriptions of their experiences in developing reading and writing. The present study was designed to address important questions like that posed above by Ferreira et al. (2007). Hence, its aim was to investigate the experiences of students with SSPI who, despite several hindrances, have developed their reading and writing beyond the phonological phases. Their descriptions of the things that have contributed significantly to the continuation of their reading and writing development beyond the beginner’s phase will be presented thematically.

Literacy is defined here as reading and writing to convey meaning (Erickson & Clendon, 2009, p. 197). Literacy learning is defined as a continuum (Lundberg & Herrlin, 2005), where our interest, due to the noted arrest in development among students with SSPI (Dahlgren Sandberg, 2006), is in the phases of morphological and orthographic literacy (Seymour, 2005) that succeed emergent literacy (Beukelman, Mirenda, & Sturm, 2005) and the two early phonological phases of literacy (Seymour, 2005).

Earlier Research

Historically, due to difficulties regarding communication, it has been difficult to obtain data on and study the learning experiences of students having difficulties with their speech and writing. Therefore, little is known about their experiences of learning to read and write. Whereas learning to read and write is universally important, it is presumably even more crucial for students having difficulties with speech. Their challenges with natural speech necessitate the use of AAC (Dada, Tonsing, & Goldbart, 2020), and the technological progress regarding AAC has increased their ability to participate in social settings and to be part of various activities. This is important because research has shown that activity and participation restrictions affect literacy development more than the severity of disabilities among students who use ACC (Erickson, Koppenhaver, & Cunningham, 2006).

Today, these restrictions are addressed by technological inventions (Wilkins & Ratajzcak, 2009). In particular, the use of high-tech, speech-generating augmentative and alternative communication devices in writing makes it possible for students with SSPI to express their thoughts (Lidström, 2011); such use thus contributes significantly to literacy development (Wilkins & Ratajzcak, 2009). Furthermore, because there often exists a huge gap between a child’s language-reception and language-expression abilities, high quality reading and writing instruction is needed to bridge this gap (Pufpaff, 2008) and thereby prevent an arrest in literacy development (Dahlgren Sandberg, 2006).

Whereas combinations of meaningful communicative practices and skills-based exercises are the foundation of systematic and structured literacy instruction for all children (Myrberg, 2007; Swärd, 2008), learners with complex communication needs require more. For instance, a reciprocal enhancement of AAC communication processes and language development is important (Sturm & Clendon, 2004). It is also necessary to address the complexity of literacy learning, according to Erickson and Sachse (2010), who stress, for example, the importance of establishing close relationships in the classroom and of trusting children’s skills. Earlier research about literacy learning has articulated warnings that require extra awareness, describing students avoiding tasks (Myrberg, 2007), which eventually may lead to a self-fulfiling prophecy of arrested literacy learning (Light & McNaughton, 1993). Smith (2014) has emphasised keeping life-long literacy goals, as literacy skills give unlimited communication opportunities and access to appropriate vocabulary for both face-to-face and social-media communication (Light & McNaughton, 2014).

Previous research about students’ (with SSPI) literacy learning has mainly been conducted among English-language users (Erickson & Sachse, 2010). Erickson and Sachse (2010) have described the literacy learning process in English of Seymour (2005) as a basis for comparisons with more transparent orthographies. Less is known about these students’ learning in less opaque orthographies, such as Swedish, and transparent orthographies, such as Finnish and Spanish, where the phases of phonological literacy are easier to learn (Aro & Wimmer, 2003). To become an independent reader, the use of letter–sound and orthographic strategies is necessary (Lundberg & Herrlin, 2005). The phase of orthographic literacy could be easier to learn in deep orthography languages (such as English), according to Erickson and Sachse (2010), as English-speaking students already employ lexical-logographic reading strategies as well as alphabetic coding strategies.

Few studies have invited students with SSPI to express their experiences (Myers, 2007; Swinehart-Jones & Heller, 2009). The importance of having their views, Wendell (1997) has stated, is that they contribute specific knowledge that is otherwise inaccessible: ‘Disabled people do have both knowledge and ways of knowing that are not available to the able-bodied’ (p. 348). The previous pilot study within the current project (Atterström, 2010) thus identified the need to investigate young SSPI learners’ perspectives and experiences. The pilot study also made it clear that the participants’ use of writing to express their thoughts was of crucial importance for conducting the study. Writing was also the only practical way of conducting longitudinal dialogues, considering the geographically long distances involved.

To sum up, earlier research has shown an arrest in literacy development among students with SSPI. Our review of research showed a paucity of pedagogical research investigating the students’ own experiences in developing reading and writing. In addition, there is an urgent need for research in less opaque orthographies (Erickson & Sachse, 2010).

Theoretical Points of Departure

The Capability Approach and Self-Efficacy

To further the understanding of literacy development among students with SSPI, two theoretical approaches were chosen for this study. Both contain key constructs that will be described here.

The capability approach intends to maximise human agency (Sen, 1992); it acknowledges human diversity as fundamental and emphasises the interdependence between intrinsic and social factors for learning (Reindal, 2009; Terzi, 2008). This approach includes two core concepts of importance, ‘capabilities’ and ‘functionings’. In our study, capabilities are the real freedoms and opportunities which form specific combinations that students with SSPI view as important for developing (valued) ‘literacy functionings’. ‘Schooling’, however, does not automatically lead to literacy functionings, as explained by Nussbaum (2006, p. 188):

In part because full support for these abilities is very costly, it is easier to avoid the evidence that people with serious impairments actually can in many cases come up to a high level of functioning.

Sen (1999) deliberately refrained from setting out a list of core capabilities, as the capabilities a person values are context-bound and changeable over time. Dignity and self-reliance, however, are personal characteristics of great importance in converting capabilities into valuable functionings, according to Sen (1992). Literacy functionings are also instrumental in expanding other capabilities (Sen, 1999).

Bandura’s (2006a) social cognitive theory involves a division of the agency concept into three different modes: individual, proxy (socially mediated), and collective. In all three we find the belief in individual, or personal, agency closely related to another theoretical construct, ‘perceived self-efficacy’. Perceived self-efficacy, the central belief in the foundation of human agency (ibid), may be understood to be about beliefs in one’s own capabilities to intentionally effect changes with respect to a certain action or goal (Bandura, 1997). Bandura (2012) sees mastery experiences, social modelling and social persuasion as contributing factors to the development of self-efficacy. These factors are seen here as important for the participants’ reading and writing development because perceived self-efficacy can influence the extent to which the students persist in their efforts to overcome difficulties on the way towards their goals (Kim & Lorsbach, 2005; Polychroni, Koukoura, & Anagnostou, 2006). The self-efficacy construct implies that people have beliefs in their ability to create environments that enable them to have better control of life, thereby increasing their levels of efficacy-based agentic activity (Bandura, 2006b). In that the participants with SSPI experience dependency on other people, it is important to consider/understand self-efficacy in the light of proxy and collective agency.

Method

Research Design

A case-based (Svensson & Doumas, 2013), explorative research approach containing researcher–participant longitudinal email dialogues was developed within a pilot study and used in the present study. The explorative nature of the approach was deemed to suit the data collection within this area where so few studies have been conducted, and where the interviewer needed to learn about various learning issues from the participants throughout the time the dialogues were taking place (Brinkmann & Kvale, 2019). The main idea with the approach was to make it possible to collect written interview data from students with SSPI over a time frame of one year and across long geographical distances. The research design was informed by an ‘inclusive research’ approach within the tradition of participatory research, where students were given possibilities to influence the conditions for their participation, such as communication adaptions, and to have their voices listened to (Nind, 2014). The cases consisted of ‘continued reading and writing development descriptions’ based on experiences by the students with SSPI and expressed through emails over time. Guidelines described how assistance should be given without interfering with the participants’ written answers. The first author’s preliminary understanding of the phenomenon was an important point of departure for the empirical study.¹ This understanding was continuously challenged and developed through the research process, during research seminars and project group meetings, for example (cf. Svensson, 2016).

Participants

A purposeful sample strategy (Patton, 2003) was used for selecting participants with SSPI who had developed their reading and writing beyond beginner’s phase. The four inclusion criteria for participation were having (1) the ability to read and write independently, (2) Swedish as a first language, (3) a dependence on AAC systems, and (4) mobility devices as well as personal assistance for gross and fine motor movements. The students had no diagnosed communication disorders (American Psychiatric Association, 2013), but they had physical disabilities which, among other things, make speech production difficult.

A nationwide call for potential informants was published in the monthly journal of the Swedish Association of Young People with Mobility Disabilities (RBU). Participants were also approached indirectly via several other nationwide organisations.

Seven presumptive participants met our criteria and they agreed to participate in the study. They were 8–16-year-old compulsory school students living in different parts of Sweden. The participants’ own descriptions of their personal characteristics are contained in Table 1.

Table

Name	age	sex	school year	communication	mobility	recruitment	participation place	helper in participation	durance of participation
Hugo	16	m	9–10	signs, alphabet, speech generating device-SGD	walker, manual wheelchair	RBU-magazine	school, home	personal assistant, sign language teacher	18 months
Michael	15	m	8–9	alphabet, Bliss, vocalisation, SGD	powered wheelchair	SPSM	school	special education teacher	14
Viola	11	f	4–5	Bliss, SGD	powered wheelchair	SPSM	school, home	special education teacher	16
David	9	m	2	alphabet, Bliss, SGD	walker, powered wheelchair	SPSM	home	mother	5
Simon	8	m	2–3	signs, alphabet, Bliss, SGD, vocalisation	unknown	RBU-magazine	school	special education teacher	7

Two students dropped out of the study before starting: one without any clear reason, and the other probably due to staff changes at school. The five remaining participants in the study were David, Hugo, Michael, Simon and Viola (pseudonyms proposed by themselves; see Table 1). Hugo was in a class for students with mild intellectual disability, while the others studied in mainstream classes. The participants used AAC in their everyday lives, not having the motor hand functioning for using sign language. Two of the participants, Hugo and Simon, combined AAC with signs, sounds and ‘vocalisation approximations’ in a way that was comprehensible to their closest caregivers. David and Simon, the two youngest students, participated only for five months. David’s mother explained that the wording used in email dialogues was not adapted enough, and despite the offer of further adaptions, David left the study. When Simon suddenly stopped the email dialogue with no explanation, the family was contacted, and although Simon’s father encouraged him to write, he did not recommence the dialogue.

Case Boundaries

The case boundaries (Stark & Torrance, 2005) were restricted to students’ (with SSPI) experiences of ‘continued’ learning to read and write in Swedish. In other words, the focus was on their own descriptions that might contribute to enhanced understanding of their development beyond the phonological phases in literacy development. A preliminary definition of ‘case boundaries’ was grounded in earlier studies and was further developed in the pilot study. Accordingly, areas of special concern were explored together with two pilot informants, 16-year-old Emil and Hanna, aged 12. They defined and redefined the case boundaries in a reciprocal explorative dialogue in close collaboration with the first author.

Data Generation

The qualitative interview was designed as an instrument to create self-reflective activity (Theman, 1983, in Anderberg, Svensson, Alvegård, & Johansson, 2008). A semi-structured, open-ended interview guide with three main foci was generated in cooperation with the two pilot informants. The first focus aimed at a ‘here-and-now picture’ of the participants’ reading and writing. The second focus was a ‘retrospective look’ to describe the development from initial literacy development to the present. The third focus was on the participants’ thoughts about future literacy dreams and further development. Each focus had four main questions, with follow up questions. Our interview dialogue was combined with a reading motivation questionnaire inspired by Marinak and Gambrell (2010) to prevent drop out after the 9-week summer holiday.

Preparations, Ethical Concerns, and Trustworthiness

Permission was obtained from the regional ethical board, number 2012/256-31. The ethical requirements of the Humanities and Social Sciences (Swedish Research Council, 2002) were followed, and the participants and their parents, teachers and principals were informed of the purpose of the study. All gave written consent. The information letter emphasised that participation was voluntary. The participants signed ‘with hand on the pen’ except for one, who used the computer. The informants were equally but differently treated during the interview process. For example, the wordings were adapted to each participant’s age group.

There were many challenges in collecting interview data from the extremely small group of students with SSPI. One of the major risks was that the students would be tired of being ‘investigated’ – so called ‘consultation fatigue’ (Sinclair, 2004) – and would consequently refuse or discontinue participation. To encourage participation, and in order to receive interview data of good quality, several adaptions were made of the interview situation. Many of these adaptions were tried in the pilot study and further developed before the main study.

One of the adaptions that was used in the present study and that was part of the guidelines concerned the use of secretarial support. Secretarial support in reading and writing was encouraged, as it was deemed important that the participants’ investment of time and energy be rewarding rather than exhausting. The secretarial support was strictly regulated in the guidelines, with the regulations formulated to counteract a mix of the participants’ and the secretaries’ thoughts in the communication with the researcher. The guidelines stated explicitly that the students’ answers should be their own, based on their own thoughts and ideas. For instance, the guidelines described exactly how the aide should act in the case of follow-up questions. The aide was not allowed to pose follow-up questions, as such action was reserved for the researcher in order to establish an interviewee–interviewer situation without external influence.

Other adaptions made in agreement with the participants included the following: the use of a written lay-out flexibly adapted to the participants’ needs in terms of size, font, colour and space; a time frame for answering interview questions individually adapted to the participants’ everyday life situations, with no time limits; participants’ choice of location for answering the questions; and the use of multiple-choice questionnaires instead of open-ended questions for some of the data collection. Throughout the data collection, the researcher who was in contact with the participants adjusted her writing to the participants’ ages and reading levels; previous research studies have shown this to be critically important (Lundberg & Reichenberg, 2008).

Analysis and Interpretation of Data

The participants’ email dialogues were rewritten in a narrative form, or a so-called case record (Merriam, 1994), where their answers to the questionnaire were also included. The starting point for the analysis of the ‘interview’ data was each participant’s descriptions regarded as a whole or, in other words, as an ‘integrality of phenomena’ (Svensson, 1997). The respondents’ narratives were then further analysed, inspired by a case-based contextual analysis approach (Svensson & Doumas, 2013). More specifically, this analysis aimed to understand the internal relations and patterns between significant aspects in each narrative and, later, across the five narratives. Firstly, all narratives were read and re-read several times to elucidate significant themes (Widerberg, 2002). After rereading and searching for salient aspects within each narrative, a comparison was made across the different narratives’ themes. The analysing process continued with coding of text fragments, which were then sorted into topic clusters that were named. Examples of such clusters were ‘long-perspective relations’ and ‘time-related patience’. These clusters were then thoroughly analysed in order to find salient content with regard to what participants experienced as significant for their continuing reading and writing development. Relations of patterns between similar themes were outlined, compared and contrasted in order to find the most distinguishing ones. Eventually, four salient main themes were found: assistive technology in writing and reading, continuity in student–teacher relationship, mutual persistence in communication, and visions of nearer goals and future work life.

Direct quotes were used throughout the analysis in order to stay close to the original meaning expressed by the students. The data analysis was carried out by the first author, and independent ‘co-readings’ were done by the third author, who came to the same conclusion about the main themes. These four themes were searched for again in the participants’ narratives in the completion of the analysis to ensure consistency. Finally, the themes were analysed in relation to the capability approach and perceived self-efficacy.

Results

Assistive Technology (AT) in Writing and Reading

Assistive technology, which was one of the four main themes that evolved from the analysis, consisted of a number of various preconditions of importance for reading and writing development. This theme is presented under two headings: ‘receiving help with obtaining AT’, and ‘use(fulness) of AT in school and at home’.

Receiving Help with Obtaining AT

The participants experienced a focus on testing different devices and computer programs for assistive technology (AT) during the first school years. By the age of 10 the participants had received basic assistive technology to use a computer for reading, writing and talking. Ten-year-old Viola, who was in year 4 at the beginning of the study, wrote about how she had just started using word prediction. One year later she described using a spelling program, ‘Stava rex’, writing

There are many people who help me and have helped me. In school it’s D [companion teacher; authors’ remark] who helps me the most. She is my teacher. K [name of regional AAC centre; authors’ remark] in X has helped me with the computer so that I’ve got good access solutions and TTS [speech synthesis; authors’ remark]. Mum and Dad have read a lot for me, and they help me with my homework. We practice every day, both reading and writing. And then I’ve also got assistants who help me a lot. I think everyone has helped me, but I can’t say who has been the most important. Dad is probably the one who wants me to practice a lot, but that’s probably because he’s a teacher. Can’t really say who’s been the most important. Everyone helps me in different ways.

As the example shows, Viola’s use of AT is embedded in a literacy supporting context. It is noteworthy that Viola was the only one who emphasised the role of a regional AAC specialist centre in obtaining AT. A contrasting example, which shows a lack of adequate assistive technology and AAC experts, was described by 16-year-old Hugo:

Interviewer: When you write on the computer do you use any assistive technology devices to make it easier?

Hugo: I use ‘speaking qwerty’. I hear the sound of each letter.

Interviewer: You write very well with just the help of the sounds. If your computer had word prediction, you could probably write even easier and faster. Have you tested that?

Hugo: What programme is that? I don’t know what word prediction means.

Hugo apparently used computer resources but was not aware of word prediction programmes, which he was eager to know more about to improve his communicative ability. After the interviewer’s explanation of what word prediction is and who to ask for it, Hugo replied that he had no speech and language therapist but would ask his teacher instead. Six months later he had received a new computer with word prediction. In the final evaluation of his own participation in the study he emphasised: ‘I learnt about word prediction. Thank you!’

Use(fulness) of AT in School and at Home

The narratives show that the students use AT on a daily basis. Accordingly, in all five narratives, the use of assistive technology (AT) was interpreted as being of great importance for the students’ communication and literacy development. Although many things were common in the narratives, the participants also described differences in usage, as several of the following examples will show.

The students used a computer for all their writing in school (such as lab reports and poems), as well as at home (such as homework assignments and Facebook texts). Michael and Viola’s presentations and speaking in public were written and then spoken by speech synthesis. Two participants, Viola and Michael, used computers for reading and writing exercises at home, beyond their ordinary homework. All participants emphasised homework as an interface between school and home.

According to all participants, writing was facilitated by word prediction and/or speech synthesis, as their not needing to write all letters saved time and effort. Listening to the word, sentence or paragraph helped them to write, when they revised spelling and content of texts, for example. Michael also emphasised the size of the computer screen as important. A small screen made writing difficult for him. First, he used a Tobii and later a laptop, which provided an increased screen size, and this made writing easier for him.

Reading was to a large extent based on screen reading, but the students also described reading texts that were not digitalised (such as exercise books at school and comic books at home). Reading was experienced as easier than writing by Hugo, Michael and Viola. According to Michael and Viola, their comprehension when reading on their own was helped by listening to texts in advance. For this, Michael used his speech synthesis, whereas Viola preferred another person reading out loud. Thus, AT was not always considered the best option. Viola wrote that her parents often read out loud to her.

For David it was impossible to describe all his reading and writing during a day, as he used it all the time in everyday life. He provided examples of being in charge of his learning in reading, listing three different strategies to facilitate reading comprehension of new, long and complex words: ‘(1) the personal assistant covers the word partially, (2) skip the word, or (3) demand help to read’.

Regular activities that simultaneously combined reading, writing, communicating and thinking were found in the participants’ narratives. Michael, the oldest of the participants, wrote that he used ‘Facebook 3 hours’ at night at home. In contrast, the longest time he spent writing – a poem at school – was only 40 minutes.

This theme ‘assistive technology (AT) in writing and reading’ shows that the students have used AT to a large extent in their everyday life, which has presumably given them a considerable amount of time to practice reading and writing.

Continuity in Long-Term Pedagogical Relationships

There are exceptional communicative challenges involved when students with SSPI interact with other people, in the classroom, for instance. Such challenges may require a lot of time and effort to overcome. Hence, it was not surprising that long-term pedagogical relationships were found in the narratives among the students in the present study. These relationships were characterised by having a high degree of continuity. The backdrop for this result, and thus for the second theme, was that the participants were asked to describe up to three persons who had special importance for their continuing reading and writing development. The students each chose at least one professional person with whom they had had several years of long-term pedagogical relationship: Viola’s companion teacher for 4.5 years, Michael’s for 7 years, Hugo’s sign language teacher for 10 years, and David’s class teacher and his special needs education teacher, both since a couple of years back when David started school. Michael’s three chosen significant persons were school staff with between 4 and 7 years of relationship to him during his 10 years of schooling. He described one of them as being a paraprofessional school aide that he had had in the early years. This person was ‘nice, safe, good at reading my thoughts’. Two of the students mentioned their parents as having special importance for their reading and writing development. Hugo emphasised his mother’s importance and Viola her father’s, also examples of long-term relationships that made for continuity.

Some descriptions of long-term relationships are described in an implicit way and are clearly connected to the students’ memories of their first steps into the alphabetical world, such as Hugo’s example of reading funny books about the cat Napoleon together with the teacher. Michael described a long-term development of communication where the school aide in the early school years interpreted his thoughts (via Bliss) until he was finally able to write down his thoughts himself with a ‘speaking qwerty’ keyboard. Viola emphasised reading many easy-to-read books on her own to achieve fluency. This is interpreted as being connected to the pedagogical relationship, because supporting the child to find books of personal interest demands a deep knowledge of his/her personality.

Mutual Persistence in Communication

The third theme focuses on persistence in handling time-consuming activities related to communication that were reported in the narratives. The students’ reading and writing, for instance, emerged as time-consuming in the way they were carried out. This was due to the participants’ speech and motor impairments, the nature of assistive technology and AAC systems, and/or communication partners’ lack of knowledge. Hence, persistence was required by people communicating with the students as well as by the students themselves. An example that indicates the need for persistence comes from Michael. He described one of his significant others, his first school assistant, and her ‘persistent’ support in helping him learn to write:

She helped me with my writing. She wrote for me when I used Bliss because I didn’t have a computer then. I’ve got one now. My eyes help me to write with my Tobii. It used to take longer before. E knew me well, and she was good at seeing what I wrote with Bliss.

Another example that shows the need for students to be persistent is when communication is misunderstood and AAC/AT is not used. The youngest participant, Simon, described his experiences in using ‘vocal approximations’ in communication: ‘Many guess what they think they hear. It is often wrong. Nine out of ten times. I think it is hard’.

Another example was related to the long-term participation required in this study. Viola showed persistence when she wrote

Here comes the answer. We have been working on it since your mail arrived. When it is a difficult question we need more time than when the question is easy to answer.

Viola also pointed out memory demands when she wrote that ‘remembering what you want to write’ was complicated.

Visions of Nearer Goals and Future Work Life

The fourth theme shows that the narratives contained several examples of self-efficacy in the area of reading and writing, despite the many challenges previously described. The students wrote about their ambitions for the near future as well as for their lives as adults. Their descriptions contained reading and writing as important requirements for their futures. The participants’ proposals of how to improve their reading and writing include ‘practising a lot’ and ‘reading a lot’. In other words, they felt responsible for their own improvements. Michael, however, found practising boring. He nevertheless seemed to be aware of the importance of practising, as he had formulated a ‘motivational’ need in his individual educational plan: to be better at expressing his opinions.

Long term goals:

Reading: To connect the reading to me and express my opinions. To draw parallels between myself and my surroundings.

Writing: To be able to formulate in an easy, intelligible and coherent way.

Short term goals:

Reading: To identify with the book’s plot.

Why I have these goals:

I think it’s difficult to express my opinions, and sometimes it’s hard for me to identify with a book.

An example of a nearby goal is also Viola’s wish to be able to read the subtitles in Harry Potter films.

Their vision for future life as adults included dreams of creative professions that demand reading and writing skills, such as author, web designer or film manuscript writer. Michael wrote about his dream job in terms of when and not if: ‘When I start working as a web designer … ’. Michael also described spending two weeks of ‘practical orientation towards work life’ (PRAO) at an advertising agency. His chosen profession demands digital creative use of both words and pictures.

Simon, the youngest student, showed a belief in his capability where creativity and literacy were at the heart:

I’m going to be a paparazzi when I’m older. Lying in bushes with my camera. I also want to be an author and write books.

Discussion

Learning to read and write is viewed as a human right in general and is crucial for students with SSPI having restrictions concerning their speech. The participants in this study provided important insights about reading and writing development for this group of students, especially in the less opaque orthography language of Swedish. Research is sparse in this type of orthography (Erickson & Sachse, 2010), and our review indicates a paucity of pedagogical research studies focusing on the literacy development experiences among students with SSPI. The students’ experiences of learning to read and write in Swedish may nevertheless contribute to knowledge of learners in even more transparent languages, as the findings summarised in the four themes do not seem to be specific to a certain type of orthography. The main themes, which were presented earlier, will be discussed here in relation to the study’s explorative approach, with the aim to get a better understanding of the participants’ capabilities. This discussion will mainly focus on issues that may contribute to an enhanced understanding of their ways of achieving literacy functionings and of how to support their self-efficacy and continuing reading and writing development.

The first theme emphasises the importance of assistive technology, in agreement with previous research (Lidström, 2011), as the participants repeatedly referred to their technical equipment and personal support in questions addressing their reading and writing development. Viola, for example, displayed awareness of the complexity of her literacy development, even though she was only a fourth grader, when she referred to both AT and personal support. Her narrative revealed several capabilities important for her reading and writing development. Her descriptions also showed, as did the other students’ narratives, how vulnerable literacy development is when a student has SSPI – for example, regarding access to AT of good quality.

The dependence on personal assistance was another example of the vulnerable learning situation they all may have faced. Without doubt, developing good communication strategies between the students and their significant persons requires a long-term process involving commitment and awareness (Heim, 1990, in Björck-Åkesson, 1992; Pickl, 2008). This means that staff changes in school present a substantial challenge for students with SSPI. The students in this study, however, have been fortunate regarding communication and staff continuity, which have been shown to be very important in studies focusing on communication (Björck-Åkesson, 1992). They have all experienced long-term relationships with ‘significant persons’, which may have been of key importance when these students transcended the critical ‘arrest phase’. Also, of substantial significance were the results indicating a combination of strong technical and personal support for these students’ reading and writing development. This is in contrast to earlier research, which shows that students with SSPI often meet opportunity barriers to literacy learning (Zascavage & Keefe, 2004). The students in our study may have been exceptions within Swedish schools, with better learning opportunities than other students with SSPI.

The themes persistence and visions together indicated individual students’ determination, patience and perceived self-efficacy concerning literacy. In our review of previous research, we have not found research findings related to these areas, but both were relevant in our study. The students all shared a future perspective of work and professions based on reading and writing skills. This was unexpected. They envisioned themselves, for instance, to be working in an inclusive community and in creative occupations where advanced reading as well as writing skills are important prerequisites.

In line with Erickson and Sachse (2010) findings, our results emphasised the importance of relationships between learner and ‘teacher’. Of utmost importance is educators’ trust in students’ skills, which may be described as proxy and collective agencies. Such trust is developed over time, where experiences of previous success are shared between students and professionals. These experiences of long-term success may have a feed-forward positive effect for students and teachers. Bandura’s (2012) theoretical contribution emphasising three factors in developing a resilient efficacy – mastery experiences, social modelling and social persuasion – are applicable to the reading and writing development for the students in our study. Without doubt, the students in our study have shown resilience in reading many books to experience mastery, even when characters and contexts have been far away from their own realities (Matthew & Clow, 2007; Rieger & McGrail, 2015). Also, social modelling appears to have happened in their classrooms’ literacy contexts. In addition, social persuasion seems to have been present frequently, according to the students’ described experiences of the significant persons’ support. Michael, for instance, described this in his mention of a significant person who ‘understood without words’. Worth noting on social modelling is that all but one of the nine participants (including potentials and pilots) were studying in mainstream classes (see Table 1).

Limitations

This study was carefully designed to suit students with SSPI. Nonetheless, there were many challenges in conducting this type of research: for example, finding participants who met the criteria, getting their agreement to participate, and preventing dropout. Hence, the study contained only a small number of participants from different parts of Sweden belonging to a very small population. Some of the participants were young, with experiences restricted to the early school years. Consequently, there are limitations that reflect the challenges involved in this type of study. The most critical issue regarding the findings is whether our strict guidelines were followed so that the participants’ email answers were written without influence from someone else. We have no indication that the instructions were not followed. When Viola wrote about the long time required to answer a difficult question, she referred to ‘we’, but there was no indication that her helper interfered with the content or violated the instructions in any way. Another issue concerns cognitive measures such as verbal intelligence. No such testing has been done, and no test results have been requested; instead, the participants’ and parents’ descriptions have been used to decide whether the students met the study’s inclusion criteria. Again, we refer to earlier research by Ferreira et al. (2007), who found that students with SSPI often showed surprising literacy skills compared to their cognitive profiles. Hugo may represent an especially interesting example of this, as he was in a class for students with mild intellectual disabilities.

Conclusions and Implications

Despite the limitations, this explorative study contributes important findings in an area where very few educational studies have been conducted. Taking the four salient themes together – assistive technology (AT), continuity in pedagogical relationships, persistence, and vision – we conclude that they are contributing capabilities in the participants’ acquiring individual functioning: in this case, developing reading and writing skills beyond the beginner’s phase. Two of these themes, assistive technology and continuity in pedagogical relationships, are described as predominantly environmental. Apparently, the students have been fortunate in having continuous and strong support, and they seem to have a belief in their own capabilities. Theoretically, it is likely that perceived self-efficacy (Bandura, 2006b) plays a considerable role in the capability of converting resources into valuable literacy functionings (cf. Sen, 1992). All three kinds of agency described by Bandura (2006a) – personal, proxy and collective – were represented in the participants’ narratives. Additionally, the educational leaders’ role here cannot be overestimated, especially in allocating resources for and planning for AT and student–‘teacher’ continuity. The other two themes, persistence and vision, are largely personal factors, though dependent on environmental support and encouragement. The four themes, containing both intrinsic and social factors for learning, seem beneficial for the students’ continued reading and writing development and seem to be in agreement with the capability approach’s aspiration of maximising human agency (Reindal, 2009; Sen, 1992; Terzi, 2008). Continuous environmental support of the students’ capabilities, especially from the long-term relationships with significant others, may have made it possible for the students to develop their valued ‘literacy functionings’, according to the capability approach (Nussbaum, 2006; Sen, 1999).

Several important pedagogical implications may be drawn from the present study. Schools, in collaboration with AAC centres and other service providers, have an important role in giving strong support to the students’ reading and writing development. Most important for schools is to ensure a learning situation characterised by continuity over time with committed professionals and adequate assistive technology that is continuously and individually adapted to each student. The use of high-tech AAC devices seems to be of great importance in avoiding an arrest in literacy development. It is noteworthy that the students in the present study have had access to AT that was more advanced and more adaptable to individual needs than the students had in the 2006 study of Dahlgren Sandberg. The present study indicates, however, that technical solutions are only a part of the complexity involved in literacy development among students with SSPI. Hence, a holistic approach seems to be crucial in addressing their literacy learning needs.

Disclosure of Conflicts of Interest Statement

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

Acknowledgments

Thanks to all seven participants (including pilot respondents), their families, teachers and aides.

Additional information

Funding

This work was supported by the Riksförbundet för Rörelsehindrade Barn och Ungdomar; Stiftelsen Clas Groschinskys Minnesfond; Stiftelsen Folke Bernadottes Minnesfond.

Notes

1. The first author is mother to an adult daughter with severe speech and physical impairment and a teacher in basic reading and writing for 25 years.