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Abstract

Children and adolescents are typically at the bottom of the hierarchy of knowledge production, and those with disabilities are further marginalised. Despite recent attempts to include them in the design and implementation of qualitative studies, it is unclear as to whether this is the case in education research. To explore this, we conducted a scoping review of qualitative research studies in K–12 education. We applied the conceptual framing of research with and by, which engages students with disability as research participants, rather than research on, which treats such students as the object of study. The aim was to generate a methodological map of studies conducted with or by students with disability, describe methodological approaches used, offer an interpretation of inclusive educational research, and identify areas for future research. We searched Proquest and Ebscohost databases, this journal and Google Scholar from 1 January 2012 to 31 December 2022 to identify studies using research with or by methodological approaches with school-aged students with disability. We included 96 studies from 29 countries, which focused predominantly on inclusion and participation, and student social and emotional wellbeing. We found that almost all studies took a research with approach by employing individual and focus group interviews, sometimes supplemented with arts- or play-based activities to guide student responses. Only two studies used a research by approach, involving students in decision-making from the outset of research, methods used and dissemination of outcomes. This suggests that the priorities and experiences of students with disability continue to be marginalised in research that guides educational decisions deemed best for them. We argue that educational research should move beyond ableist and exclusionary practices to include students with disability in knowledge generation that guides decisions about schooling to generate greater diversity in education research and practice.

Keywords

children adolescents disability education research scoping review

Introduction

Participation is considered the ‘fundamental right of citizenship’ (Hart, 1992, p. 5), yet children are the ‘most photographed and least listened to members of society’ (p. 8). This is particularly the case in research, because of researchers’ tendency to underestimate children’s competence while simultaneously using them to generate ideas that are then synthesised into principles to support decision-making, often about activities relevant to them. When children’s views are heard and considered in research related to them, the evidence points to their increased sense of agency and motivation (Tyrrell & Woods, 2018). Involving children in decision-making about their social and, in this article, education environments can even be experienced as emancipatory. To improve the school experience and learning outcomes for all students, including and especially those with disabilities, there is a need to move beyond tokenism to understand K–12 education from the perspective of children and adolescents. Including young people with disability in education research, therefore, is a powerful tool to inform inclusive educational practices (Sharma, 2021).

Qualitative research that includes children, with or without disability, has historically been limited because of perceived power dynamics between researcher and participant, alongside concerns about the authenticity of children’s voices represented in the outcomes (Montreuil et al., 2021). Discerning children’s voices as separate to those of researchers is an almost impossible challenge (Mason & Watson, 2014), yet was found to be the most prevalent ethical consideration for the majority of studies in a recent systematic review (Montreuil et al., 2021). Gaining access to and informed consent from children where parent and carers act as gatekeepers (Mason & Watson, 2014) has also proved to be challenging. Access can be exacerbated in countries where education research requires additional clearances from government departments and where ethics review boards subscribe to the view that children and young people with disability are additionally at risk and requiring of increased protective research protocols (Tucker & Govender, 2017).

Enabling students to have a voice is ultimately in their best interests (Hart, 1992, p. 7). Yet involving students in research requires sensitivity to their development and shifts in thinking about the methods that can maximise their ability to voice concerns about the issues that matter most to them. This means moving beyond researcher-controlled methods, such as questionnaires and participant-observation, that ‘barely scrape the surface of what children are able to tell’ (p. 15) to more participatory methods that require collaboration between researcher and researched to identify the research problem, investigate its underlying causes, and dialogically generate and mobilise the knowledge and insights of the collective to effect change that is beneficial to researchers and empowering to participants (p. 16). Yet participatory methods have been seen by researchers as time-consuming and challenging, and do not automatically support inclusive participation (Tucker & Govender, 2017).

An Inclusive Research framework developed to extend participatory research to include people with disabilities (Walmsley & Johnson, 2003) has been instrumental in the move towards research that involves people with disability in its design and processes to better reflect their lived experience and different ways of knowing (Nind, 2017). This framework is underpinned by the following five principles, that the research:

1. Problem is owned (but not necessarily initiated) by people with disability;

2. Furthers the interests of people with disability and address issues that matter to them;

3. Is collaborative, with people with disability involved in the process of doing research;

4. Enables people with disability to exert some control over the research process and outcomes; and

5. Findings and outcomes are accessible to people with disabilities (Milner et al., 2019; Nind, 2017).

An inclusive research framework proposes that children’s interests are best served by conducting their own research based on an agenda in which they have been involved in developing (Mason & Watson, 2014). This approach is necessary to move beyond methods that rely on adult and/or non-disabled participants’ views of children, which inadvertently elides children’s perspectives and experiences (Fayette & Bond, 2018).

Inclusive approaches can involve children in research at different stages of the research process, but should actively involve them in key decision-making and enable their views to be heard (Montreuil et al., 2021). The idea that children are active and agentic is well-accepted in sociology and psychology (Sorbring & Kuczynski, 2018), yet education researchers rarely consider how their own research might be enhanced by understanding the importance of child agency and deploying their strategic interpretation in their own wellbeing (p. 1).

Research involving children requires that researchers pay attention to their ‘“culture of communication” … as a way of guiding their work to the most appropriate methodological practice’ (Christensen & James, 2008, p. xi). This is particularly so for children with disability, where research techniques can be ‘developed in situ to mediate communication with children who cannot verbalize their views and understandings … in different ways – through drawing; through writing; through mathematical skills; and through talking’ (p. 8). In other words, the research technique itself can enable children to be become reflexive interpreters of their own social experiences (p. 7).

Conceptual Framework: Research on, with and by Children

Our review is underpinned by the conceptual framework of Mason and Watson (2014), which incorporates three themes informed by contemporary theories in childhood studies. The themes are that: childhood is socially constructed; children’s status and rights need to be recognised, and while adult–child relations are significant, researchers must ‘produce a version of “the child and indeed a version of childhood” … the meaning of what it is to be a child in researching children’ (p. 2758). Central to this approach is a shift away from the idea of research conducted on children, where adults are researchers and children and childhood are the research objects, to ‘research with children as central informants of their own life worlds … social actors who are subjects, rather than objects of enquiry’ (Njelesani et al., 2022, p. 1). Research with encompasses a range of ways of engaging children, from using verbal or visual methods to guide interviews and focus groups, to integrating participatory and arts- and play-based activities as research methods. Prioritizing the participation of children with disability in qualitative research with approaches, therefore, will enhance its ‘relevance, meaningfulness, and impact’ for all children (p. 1).

Research by engages children as co-researchers who actively contribute to shaping the research agenda and processes (p. 3). Despite almost 20 years of discussion, however, the notion of research of with and by children remains ill-defined in research reporting (Montreuil et al., 2021). Our aim in this review was to identify and map education research with and by students with disability to address this lack of clarity and to make explicit the differences between these approaches by identifying the processes and methods that can guide researchers in conducting inclusive education research.

Methodology

Our scoping review followed a configurative logic to investigate meanings and understandings of qualitative research with and by students with disability (Aromataris & Munn, 2020), with the purpose of mapping concepts and clarifying definitions or conceptual boundaries (Hallinger, 2013). Scoping reviews do not generally report search strategies or inclusion criteria, conduct quality assessment or synthesise findings (Evans et al., 2000). Instead, they ‘describe the nature of a research field’ (Newman & Gough, 2020, p. 1), commonly present results in diagrammatic or tabular form (Peters et al., 2015) and identify areas for further research (Arksey & O'Malley, 2005).

Research Question and Review Purpose, Search Terms and Procedures

Our review process broadly followed Njelesani et al. (2022), who critically examined the participation of children with disabilities in qualitative health research. We were guided by the research question: What evidence is there of qualitative education research with and by students with disability? The aim was to generate a methodological map of studies conducted with and by students with disability, describe processes and methods that apply the principles of inclusive education research, and identify areas for future research in this space.

Both authors independently searched Proquest (Education Database) and Ebscohost (Academic Search Complete, Education Research Complete, ERIC) databases, this journal and Google Scholar using terms (Table 1) adapted from Njelesani et al. (2022). Results were imported into Covidence (Veritas Health Innovation, 2023), whereby authors independently screened articles by abstract and title. Disagreements were resolved through discussion. Each author then independently conducted full-text screenings of the remaining articles, while iteratively developing inclusion and exclusion criteria.

Table 1.

Search Terms.

Database	“Qualitative” OR “ethnography” OR “narrative” OR “action research” OR “interview” OR “focus group” AND
	“K–12 education” OR “special education” OR “primary education” OR “secondary education” OR “primary school” OR “elementary school” OR “middle school” OR “secondary school” OR “high school” AND
	“Child” OR “youth” OR “adoles” OR “girl” OR “boy” OR “minor” OR “juvenil” OR “teen*” AND
	“Co-design” OR “collab” OR “user-centr” OR “human-centr” OR “participat*”
	“Disab” OR “impair” OR “disorder” OR “delay” OR “mental disorder” OR “blind” OR “deaf” OR “Autis*”
IJQM	“Qualitative research methods” AND “children with disabilities” 2012–2022
Google scholar	“Qualitative research methods” AND “children with disabilities” 2012–2022
Google scholar	“Researching with children with disabilities" 2012–2022

Studies were included where they were: published between January 2012 and December 2022 (chosen because of the vast number of qualitative research studies in schools); English-language with full text available; peer-reviewed journal articles; inclusive of school-aged children (4–18 years, K–12) with disability (intellectual, physical/mobility, hearing/vision impairment, mental health, ASD, neurodiversity) as participants; and represented research with or by students with disabilities. Studies were excluded where they were: not in English; not empirical research; involved adults only; did not use qualitative methods or articulate methods; research on students with disability (e.g. survey questions or observation alone); or did not take place in a school context.

Data Extraction Procedures and Analysis

Data were extracted by the second author as direct quotes or paraphrasing from the 96 articles and inserted into an Excel spreadsheet under the categories: citation, publication year, study location by region, according to the UN Geoscheme (United Nations, 2023), school context, curriculum area, study aim, research methods with or by students with disability, age/grade, sample size, nature of disability, other participants, and total sample size. Qualitative analysis of the reported study aims, research methods and description of participation by students with disability was undertaken by the second author and reviewed by the first author. Data were synthesised into a table using descriptive statistics to allow comparison across categories. After a discussion guided by Mason and Watson’s (2014) framework, studies that were determined to be research by students with disability were identified.

Results

Study Selection Results

The database search yielded 1494 articles, resulting in 1128 after duplicates were removed in Covidence. Abstract and title screening reduced the number to 231. The search of this journal and Google Scholar yielded another 194 articles. Abstract and title screening resulted in an additional 29 articles, bringing the total number of articles for full-text review to 260. After discussion between authors to determine which studies were considered research with and by students with disability, 164 articles were excluded, leaving 96 articles for analysis. Although not necessary for scoping reviews, we used the Preferred Reporting Items for Systematic Reviews (PRISMA) generated by Covidence to enhance the reporting quality of our review (Figure 1).

Figure 1.

PRISMA flow diagram.

Characteristics of Included Studies

Our aim was to generate a methodological map of education research with or by students with disability, describe processes and methods used to offer an interpretation of inclusive educational research, and identify areas for future research. The characteristics of all 96 studies are presented in Table 2, categorised as research with or by students with disability, and supplemented by descriptive statistics of publication year, study location, school context, sample size, participant demographics, nature of disability and study aims to allow comparison across categories.

Table 2.

Study Characteristics of Qualitative Research With and by School-Aged Children With Disability.

Study characteristics		No. of studies	% of studies
Research with	Individual interviews alone	55	57
	Focus group interviews alone	15	16
	Both individual and focus group interviews	3	3
	Interviews supplemented by visual/verbal prompts or arts/play-based participatory activities	21	22
Research by	Inclusive research	2	2
Publication year	2012–2016	39	41
Publication year	2017–2022	57	59
Study location	North America	34	35
	Europe (including UK)	34	35
	Asia	10	10
	Australia and New Zealand	9	9
	Africa	8	9
	Central and south America	1	1
School context	Preschool, kindergarten, primary (4–12 years)	32	33
	Secondary (12–18 years)	54	56
	Both primary and secondary (4–18 years)	10	11
Participant sample size and demographics	Students with disability among participant groups (n = 1,302, 31% of N = 4158)	55	57
	Students with disability exclusively (n = 553, 43% of N = 4158)	41	43
	Boys with disability exclusively (n = 303, 55% of N = 553)
	Girls with disability exclusively (n = 170, 31% of N = 553)
	Gender not stated (n = 80, 14% of N = 553)
Disability type	Autism spectrum disorder (ASD)	33	35
	Hearing/vision/speech impairment	20	21
	Learning disability, special education needs	14	15
	Cerebral palsy, physical/mobility impairment	9	9
	Intellectual disabilities	8	8
	Attention-deficit/Hyperactivity disorder (ADHD)	6	6
	Behavioural/emotional/conduct disorders	3	3
	Down syndrome or metabolic/neurodevelopmental disorder	2	2
	Not stated	1	1
Study aims	Inclusion or participation	35	37
	Social/emotional well-being	33	35
	Transition (to school or employment)	9	9
	English/literacy	7	7
	PE/PA (physical education/activity)	5	5
	Success	5	5
	Mathematics/numeracy	1	1
	Creative arts	1	1

Research with and by Students with Disability

Guided by Mason and Watson’s (2014) framework, all articles were selected because they used qualitative methods, reflecting research with students with disability, or conducted inclusive education research, representing research by students with disability.

The vast majority of studies (n = 94, 97.9%) represented research with students with disability, because they involved individual (n = 56) or focus group (n = 15) interviews, or a combination of both (n = 3). Of these, five studies supplemented interviews with visual or verbal prompts, such as a slideshow, quiz board poster and students’ drawings (Healy et al., 2013) to guide students’ responses, and 15 studies used arts- or play-based activities to elicit insights difficult to communicate in interviews alone. For example, photographs taken by children with Down syndrome to elicit personal narratives (van Bysterveldt & Westerveld, 2017), photovoice activities (Zilli et al., 2020a), educational journey mapping (Yu, 2020), self-reporting daily experience scrapbook (Harvey et al., 2014), and a specially devised game, the three houses, to meaningfully engage students (Cunningham, 2022). Participatory methods were used in a small number of studies, for example, codesign workshops (Davison et al., 2022) and community-based action engagement in the development of special education technology (Kang et al., 2021). None of these studies, however, engaged students in decision-making during the research process.

We determined only two (2.1%) of the 96 studies reviewed (Bonati & Andriana, 2021; Nguyen et al., 2015) represented research by students with disability. This is because students with disability were involved in decision-making and multiple research activities across the life of both projects, including determining and implementing research aims and purposes, processes and methods, outcomes, and modes of dissemination (Table 3).

Table 3.

Studies Employing Research by Students With Disability.

Citation (study location) Participants, school context	Study focusStudy aim	Research processes	Methods
Nguyen et al. (2015)(Vietnam)Secondary school girls with a range of impairments (intellectual, mobility/physical impairments) 11–25 years (n = 21)	InclusionTo bring the voice and perspectives of girls with disabilities into the framework of human rights monitoring in the global south	Two-day workshop with groups of three students facilitated by a (disabled) adult. Drawing: Students used the prompt ‘me and my community’ to draw, display and explain their drawings to each other. Photovoice: Groups responded to the prompt ‘feeling included and feeling not included in my school’; each student took photos responding to the prompts, which were printed on-site and exhibited on a display board; students viewed photos in a ‘walk about’ process, pasted them onto a sheet of paper, wrote captions, and explained these to the group. Participatory visual activity combining photovoice and artmaking: Group session on making policy recommendations, worked collectively in small groups to brainstorm a message, develop a slogan, choose a photo, photographically stage and re-enact the photo, generate an image, create and present to the group seven ‘policy posters’ with messages for policy-makers and community leaders	Participatory visual methodologies, drawing, photovoice, group discussion, poster making, stakeholder presentation
Bonati and Andriana (2021)(Indonesia)Non-government primary and secondary school students with learning disabilities and other impairments, primary grade 5/6, secondary school grade not stated (n = 9) (+22 non-disabled students)	Inclusion (social)To explore how students with and without disabilities perceive social inclusion, belonging and their community	Orientation: Students were introduced to photovoice, photographic themes about the meaning of community, engaged in a photography workshop, and given cameras. Nine-step photovoice rounds in a curriculum-related project: Students took photos at a market or in their neighbourhood, which were used as prompts to identify issues in the SHOWeD thematic analysis method, which asked specific questions about what the photos showed and why they took them, followed by a group photovoice debrief. Collective planning: Students discussed how to share their photos and stories with stakeholders; together, they created 31 posters, each with a student’s photo and caption identifying an issue of concern, displayed in an exhibition at the high school. Posters were accompanied by live and video-recorded student presentations about the issues and the meanings of photos (accessed via QR code)	Photovoice and collective workshops (arts-based participatory action research methodology), photographic poster exhibition and video-recorded student presentations

Our key finding is the paucity of studies representing research by students with disability. Irrespective of this finding, we next present the results of our analysis of methods by categories identified in Table 2.

Methods by Year of Publication

Thirty-nine studies (41%) were published between 2012 and 2016, and 57 studies (59%) between 2017 and 2022. Of the former five-year period, 26 used individual (79%) and five used focus group interviews alone, three used visual or verbal prompts to guide interviews, three supplemented interviews with arts- or play-based activities, and one engaged Aboriginal sharing circles as culturally appropriate focus groups (Mitten, 2013). Only one study engaged in research by students with disability during this period (Nguyen et al., 2015).

Of the latter six-year period, 30 used individual (74%), nine used focus groups interviews, and three used both. Fourteen studies supplemented interviews with arts- or play-based activities. For example, researcher photos taken in an interactive approach to observation and dialogue with students at school were later used as prompts in interviews with parents and school staff (Øien et al., 2016). Only one study represented research by students with disability during this period (Bonati & Andriana, 2021).

Methods by Study Location

Of the 29 countries in which studies were located, most took place in North America (USA and Canada) (n = 34) and Europe (UK, Sweden, Norway, Turkey, Denmark, Iceland, Finland, The Netherlands, Ireland, Spain and Germany) (n = 34). All North American studies used individual (n = 25) or focus group interviews (n = 9), of which five were supplemented by arts- or play-based activities. Similarly, all but one European study used individual (n = 25) or focus group interviews (n = 6), or both (n = 2), of which nine were supplemented with arts-based activities.

Of the ten studies that took place in Asia (Indonesia, Taiwan, Singapore, Vietnam, Sri Lanka, China and Hong Kong, and Macau), five used individual (n = 3) or focus group (n = 2) interviews, two of which were supplemented by arts-based research activities, such as poster-making (Hakiman et al., 2022) or photo elicitation (Yu, 2020). The only studies that met the criteria for research by students with disability took place in Asia (Bonati & Andriana, 2021; Nguyen et al., 2015).

Studies conducted in Australia and New Zealand (n = 9) used individual (n = 8) or focus group (n = 1) interviews, three of which were supplemented with visual/verbal prompts and a play-based activity. All eight studies conducted in Africa (South Africa, Kingdom of Eswatini, Lesotho, Nigeria, Sudan and Zimbabwe) used individual (n = 4) or focus group (n = 4) interviews alone, as did the study in Central and South America (Chile) (n = 1).

Methods by School Context

More than half of the studies (n = 54) involved adolescents with disability in secondary schools (12–18 years). All of these studies used individual (n = 40) or focus group (n = 10) interviews or both (n = 2), six of which were supplemented with arts-based activities. For example, self-adhesive notes and markers were used to help students visualise their personal support networks while explaining them (Rey et al., 2022) and poster creation to help students express subjective well-being (Davison et al., 2022). One research by study was conducted in a high school (Nguyen et al., 2015).

Thirty-two studies engaged students with disability in preschool, kindergarten or primary schools (4–12 years), one of which was conducted within a paediatric hospital-based classroom (Lindsay & Hounsell, 2017). Almost all of these studies used individual (n = 25) or focus group (n = 5) interview methods, 14 of which were supplemented with arts- or play-based activities. For example, students illustrated their experiences of physical education classes by choosing pictures taken by the researcher (Pellerin et al., 2022), while children with ADHD or ASD engaged in play activities (Skovlund, 2014). One study used a community-based participatory action research approach to enable students to contribute to the development and evaluation of special education technology (Kang et al., 2021).

Seven studies involved students with disability in both primary and secondary schools (4–18 years). Six of these studies used individual (n = 6) and focus group interviews (n = 2), one of which supplemented interviews with visual prompts, and one involved a culturally appropriate sharing circle (Mitten, 2013). One research by study involved students with disability in both primary and high school (Bonati & Andriana, 2021)

Methods by Sample Size and Demographics

More than half of the studies (n = 55) engaged a range of participant groups, including students with disability, non-disabled students, parents/carers, other family members, school staff and key informants. Forty-one studies (43%) exclusively engaged students with disability as participants. Overall, however, students with disability comprise less than a third (31%, n = 1302) of total participants across all 96 studies (N = 4158).

Of studies exclusively involving students with disability, the gender distribution was 55% boys (n = 303), 31% girls (n = 170), and 15% did not identify gender (n = 80). Seven studies involved only girls with disability (n = 50), while 13 studies involved only boys with disability (n = 76).

The majority of studies (n = 55) involved individual interviews, with sample sizes ranging from one (Connaughton & Cline, 2021) to 72 (de Boer & Kuijper, 2020) students with disability representing an average of 12.6 students with disability per study (total n = 691). Sample sizes in studies involving focus group interviews (n = 16) with students with disability ranged between one (Hagner et al., 2014) and 139 (Kester et al., 2022), an average of 23.4 students with disability per study (total n = 375). Studies combining individual and focus group interviews (n = 3) sample sizes ranged from one (Ezzamel & Bond, 2017) to 20 (Pellerin et al., 2022), with an average of eight students with disability per study (total n = 20).

Sample sizes in studies supplementing interviews with arts-based or play-based research activities (n = 12) ranged from three (Yu, 2020) to 27 (Rey et al., 2022), with an average 10 students with disability per study (total n = 120). The two research by studies engaged 21 (Nguyen et al., 2015) and nine (Bonati & Andriana, 2021) students with disability.

Methods by Disability

Studies representing research with students diagnosed with ASD (n = 33) used individual (n = 25) or focus group interviews (n = 6), or both (n = 2). Of these, nine studies supplemented interviews with prompts or arts-based activities. For example, students’ artwork (Zitomer, 2016), and a photovoice activity (Zilli et al., 2020b).

Research with students with hearing, vision or speech impairment (n = 20) was restricted to individual (n = 13) and focus group (n = 7) interviews, one of which used a card sorting activity to supplement interviews with deaf and hard of hearing (DHH) students (Todorov et al., 2022). Similarly, students with unspecified learning disability/difficulties and/or special education needs (n = 14) engaged in individual (n = 9) and focus group (n = 3) interviews, with one study supplementing interviews with photo elicitation techniques (n = 1). Only one study represented research by, because students with disability engaged in all stages of the research, which involved arts-based research activities, collaborative discussions, and student-led presentations and exhibition of research outcomes (Bonati & Andriana, 2021).

Students with cerebral palsy or mobility/physical impairment (n = 9) were involved in individual (n = 7) and focus group (n = 1) interviews alone, with one study reflecting research by (Nguyen et al., 2015). Similarly, studies involving students with intellectual disabilities (n = 8) used individual (n = 6) and focus group (n = 2) interviews, supplemented in one study with blackboard notes (Rey et al., 2022) and photographic methods in another (Kang et al., 2021).

All but one study engaged students with ADHD (n = 6) or behavioural, emotional and conduct disorders (n = 3) in individual interviews (n = 9), one of which used prompts (Harvey et al., 2014), and one also used focus group interviews. Verbal and visual prompts were used in individual interviews with students with Down syndrome (van Bysterveldt & Westerveld, 2017), while one study used culturally appropriate Aboriginal sharing circles for students with Fetal Alcohol Spectrum Disorder (FASD) and related neurodevelopmental disorder (ARND) (Mitten, 2013). Only one of the 96 studies did not specify participating students’ disability.

Methods by Study Aim

The majority of studies (70%) sought to understand the degree to which students with disability felt included in schooling (n = 35) or their perceptions of their own social/emotional wellbeing (n = 33). To explore inclusion, 23 studies used individual interviews, eight used focus group interviews, one used both, and two comprised research by students with disability (Bonati & Andriana, 2021; Nguyen et al., 2015). Similarly, to explore student wellbeing, 27 studies used individual interviews, three used focus group interviews, two used both, while one study supplemented interviews with arts-based activities (Lundqvist et al., 2019).

Of the 14 studies that aimed to explore how students with disability experienced the transition from primary to secondary school or secondary school to employment (n = 9), seven used individual interviews and two used focus group interviews. Five studies sought to describe what success at school looked like for students with disability, of which four used individual interviews and one used arts-based research methods (Ajodhia-Andrews, 2014). The remaining 14 studies sought to understand students’ experiences of curriculum-related areas such as literacy, numeracy, PE and creative arts, exclusively used individual (n = 11) or focus group interviews (n = 3).

Discussion

We identified 96 studies that used qualitative research methods engaging students with disability in school contexts. While the sheer volume of such research over the last ten years is heartening, what is less encouraging is that almost all studies (n = 94) relied on researcher-controlled (Hart, 1992) methods to engage students with disability, namely, individual or focus group interviews. This suggests that education research continues to privilege researcher’s, rather than students’, concerns in determining what is to be studied and how, echoing Hart (1992), in that while children may be involved in generating data, they are about to follow up on what happens to those data, perhaps leaving them with a feeling of being ‘listened to’ but not actually ‘heard’ (Christensen & James, 2008). The power imbalance implied in the skew away from research by students with disability is exacerbated by our finding that the majority of studies (n = 55) engaged adult participants as well as students with disability, with the latter comprising only 21% of those participants. Gender further complicates this power imbalance, in the finding that of the 41 studies exclusively engaging students with disability, girls represented less than a third of participants. This suggests there is ample opportunity for student-led, gender-balanced studies that investigate the concerns and interests of students with disability, rather than those of researchers alone.

Continuum of Methodological Participation by SWD

A key finding of our review is that qualitative education studies can be mapped onto a continuum of methodological participatory activity between research with and research by students with disability. At one end of the continuum sit the aforementioned studies that use researcher-controlled methods, such as individual and focus group interviews alone (n = 74), in which students with disability respond to pre-determined questions to address researchers’ concerns. At the other end of the continuum, is research that positions students with disability as co-researchers involved in all stages of research, determining research questions, data collection method and analytical methods, and modes of dissemination of research outcomes to external, influential stakeholders beyond their school communities (Milner et al., 2019; Nind, 2017). In such studies, research methods are more participatory, arts-based and function flexibly to enable adjusted levels of accessibility, choice and support and help identify student concerns and amplify their voices in advocating for changes they deem are required.

We identified only two studies that fit the description of research by students with disability. Both used participatory methodologies, including Photovoice, which is an arts-based participatory action research methodology. The first engaged primary and high school students with and without disability in a student-led collaboration in which they staged and applied photographs to policy posters they created with messages about disability as a human-rights issue to policy-makers and community leaders (Nguyen et al., 2015). The second explored students’ perceptions of belonging in their community in a nine-step participatory project connected with the school curriculum, in which they were supplied with cameras, trained in photography, engaged in discussions about their meaning, and collectively planned an exhibition of their photos accompanied by recorded presentations accessed through a QR code, through which they shared their stories with stakeholders (Bonati & Andriana, 2021).

The remaining studies sit between the continuum extremes because they engaged students with disability to a greater or lesser extent in a range of arts- or play-based activities in conjunction with, or supplementary to, interviews and focus groups.

Strategies to Support Students with Disability to Participate in Interviews and Focus Groups

Closer to the researcher-controlled end were those studies that used visual or verbal aids or play activities as prompts to increase the participation of students with disability by supporting their interpretation of interview questions and more readily elicit their views. Some studies used researcher-provided photographic or pictographic images sourced from a standard set or the researcher’s images taken during observation (Øien et al., 2016), or a combination of student- and researcher-produced images (van Bysterveldt & Westerveld, 2017). Pictorial Likert scales were used to help primary school students with ADHD rate their feelings and perceptions (Daniel & McLeod, 2017), while numbers corresponding to happy/sad emojis helped secondary school students with ASD indicate their preferences for a proposed school-based, social-focused intervention package (Bottema-Beutel et al., 2016). The use of images to guide interviews in these studies is an important step toward addressing concerns about children being the most photographed and least listened to in society and research (Hart, 1992).

To assist primary school students who were deaf or hearing impaired in maintaining focus during the interview process, Todorov et al. (2022) incorporated an activity in which they sorted researcher-provided cards into two columns related to what makes it harder or easier to participate in classroom lessons. These methods may be useful for students with other disabilities, including ADHD, ID and ASD. Careful consideration, however, must be given to the timing of such activity to ensure researcher statements do not subsequently influence students’ responses to later interview questions.

Several studies demonstrated cognisance of challenges that students with ASD may experience in new, unpredictable environments such as interviews by incorporating visual aids to outline the timing and stages of the research process and support students’ understanding of interview questions (Bottema-Beutel et al., 2016; Healy et al., 2013; Neal & Frederickson, 2016). Other studies invited students to draw pictures to help them focus on the interview questions (Zitomer, 2016).

Computers were sometimes used during interviews, reportedly having a relaxing effect for students with ASD and serving as a focus point contributing to free-flowing conversation (Barrow & Hannah, 2012), while Powerpoint slides and other visual aids were incorporated into interviews with primary school students with ASD (Healy et al., 2013). Irrespective of the reported positive outcomes, the use of technology to support interviews might conceivably come with unexpected challenges, particularly around tablet devices ordinarily used for leisure. Advice should be sought from educators and caregivers regarding the appropriateness of technology-supported interviews for individuals with disability. Some interview studies provided flexible response modes, such as in-person, video chat, phone, mail or instant messaging options (Bottema-Beutel et al., 2016), to enable, for example, students with ASD more processing time and reduced pressures associated with in-person interviews (Goodall & MacKenzie, 2019).

A novel time- and resource-efficient approach to interviewing students with ASD was trialled by Cunningham (2022). The researcher drew three houses, one of which was the ‘house of dreams’ that represented ways in which school practices could be changed, to focus student group discussions on what was going well and what was not going well at school, with responses categorised within the houses. Another study visually recorded the responses of students with ASD during interviews to assist them in understanding and recalling ideas at later stages of the interview (Neal & Frederickson, 2016). This suggests value in making data visually accessible during the interview process to overcome attention, processing and recall challenges.

Supplementary Arts- or Play-Based Research Activities that Generate Data

Arts-based activities are increasingly used in qualitative research involving people with and without disabilities. Photovoice was used in studies examining students’ with disability perceptions of inclusion (Bonati & Andriana, 2021; Zilli et al., 2020b), while others used photo elicitation (Rubuliak & Spencer, 2022; Yu, 2020) or creative media to develop visual narratives that expressed insights difficult to convey in interviews (Ajodhia-Andrews, 2014). A number of studies engaged students with disability in creating drawings and artworks (Lundqvist et al., 2019; Pellerin et al., 2022; Skovlund, 2014; Zitomer, 2016), although there were often insufficient descriptions of how these methods were used or the purpose and quality of the outcomes. Engaging students with disability in producing artwork at the start of an interview was reported to provide an additional source of data while helping them become comfortable with the researcher (Pellerin et al., 2022). As to be expected, not all methods are suitable for all participants, with some students with disability requiring a proxy to produce drawings (Lundqvist et al., 2019).

An alternative method to support participation was the use of toys and figures as tools to enable students with disability to express themselves and reduce researcher bias (Boström & Broberg, 2018; Skovlund, 2014), but again, insufficient description of these techniques restricts transfer to new studies.

The most comprehensive use of play-based activities we found was adopted by a study after consideration by a Children’s Research Advisory Group (CRAG) (Goodall & MacKenzie, 2019). A ‘Beans and pots’ activity enabled three autistic young people to place a personalised ball into one of three pots to reflect their response to a statement as true, not true or unsure. ‘Diamond Ranking’ enabled students to order nine statements about schooling in degrees of inclusiveness. To stimulate discussion, students added words to two generic figures in ‘Good teacher, bad teacher’, while ‘Me at school’ and ‘Design your own school’ activities enabled students to respond through drawings. The study’s rich findings support the effectiveness of play-based methods to engage students with ASD in qualitative research activities.

One noteworthy study utilising multiple methods with students with disability was undertaken by Rubuliak and Spencer (2022). This study investigated students’ experiences of inclusion during recess in the context of two one-on-one interviews. The first engaged students in a child-led, in-situ (mobile) guided tour of their outdoor recess space, during which time they took photographs that were later used by the researcher to elicit conversations during the interview. During the second interview, two students drew pictures and created mind maps of their recess experiences, while the third student elected to remain in the playground area. The child-generated data were supplemented with researcher fieldnotes and reflexive journaling. The children’s stories were (re)presented through researcher-created poems, vignettes and short narratives. On the surface, such an approach appears to capture participants’ voices, but it raises a question about whether the outcomes might be more authentic if students with disability were also involved in the (re)presentation process.

A mosaic approach to research methodology (Clark, 2005) engages visual and verbal methods, such as photography, tours, filming and geo-mapping (Montreuil et al., 2021). One study in this review applied a mosaic methodological approach to elicit data (Ajodhia-Andrews, 2014). In seeking to understand how six ethno-culturally and ethno-racially diverse students with disability experienced bullying at school and how these experiences contributed to their sense of school belonging, group interviews and diverse arts-based methods were used to enable students to express ‘knowledge and insights that were difficult to communicate in interview discussions’ (p. 128). Methods included journal writing, group brainstorm mapping, and completing a ‘Thoughts about me’ booklet created specifically for the study. Drawing enabled students to express their feelings about inclusion, exclusion, differences and learning, while photographic visual narratives captured their individual stories. A further storygame activity saw students with disability take turns adding lines to an open-ended story. This example of a mosaic methodological approach aligns with principles from the Inclusive Research Framework (Walmsley & Johnson, 2003), specifically, about research being collaborative and enabling participants to exert some control over the research outcomes by offering tailored activities to match levels of capability and development. In contrast to Rubuliak and Spencer (2022), a notable strength of this study was the decision to ‘re-present to participants’ multiple versions of their narratives throughout the research, providing opportunities to debate which stories and images to include, verify data interpretations and intended meanings, and ensure narratives were conveyed as they desired’ (p. 130). The lack of detailed description combined with the range of methods and diversity of settings in which mosaic methodological approaches were used here make it difficult to transfer to research involving other populations of students with disability. The use of the mosaic methodological approach does not, however, automatically represent inclusive education research, and highlights the challenge in categorising research as either with or by students with disability.

Implications for Future Research

Our findings suggest the need for more research to be undertaken by specific student populations, notably, students with ASD and high school students with disabilities. Students with ASD comprised one-third of students participating in the reviewed studies, although neither of the two studies constituting research by included students with ASD, representing a potential area for inclusive education research. We also found that more studies based in primary school used arts- or play-based methods to supplement individual or focus group interviews, compared to studies conducted with secondary school students. Future research applying arts- or play-based methodologies with such students may be warranted.

Surprisingly, given the focus on education in this review, relatively few studies examined curriculum outcomes. This suggests a need for future research by students with disability that focuses on specific curriculum areas, to better understand student experiences of various pedagogical approaches and the impact of adjustments and accommodations on the student experience and academic outcomes.

The incorporation of arts- and play-based methodologies into inclusive educational research has the potential to enrich engagement of students with disability and, therefore, the diversity of collected data. Ideally, arts-based and play-based methodologies should be integrated seamlessly within the existing framework of activities valued and enjoyed by students, thereby enhancing the meaningfulness of their engagement. Ongoing critical examination of these methodologies, however, is imperative to address the inherent limitations and methodological challenges they present. The lack of sufficient methodological descriptions in the majority of studies reviewed restrict the transfer of such approaches to future studies. In addition, researchers may apply these methods without the expertise required to effectively implement and interpret such methods. Such disparity in expertise may lead to inconsistent application of methods that undermines the synthesis of data and comparability of research outcomes across studies.

There is an intrinsic tension in research by approaches, between the autonomy granted to student participants in steering research activities, and the necessity for structured guidance to maintain the integrity and focus of the research objectives. It is incumbent upon researchers to balance student-led inquiry with strategic direction to ensure that inclusivity does not come at the expense of qualitative rigour.

The use of qualitative methodologies discussed here is also marked by significant demands on temporal and financial resources, while their complexity necessitates a conscientious approach to involving students with disability to prevent the imposition of an undue burden upon them. Research protocols must be carefully designed to foster an environment where participation is not only informed and voluntary, but also framed as an empowering avenue for student-led advocacy and self-expression, as opposed to being considered additionally at risk and requiring of increased protective research protocols (Tucker & Govender, 2017).

While this scoping review was delimited to education research, the implications of the methodological approaches discussed extend far beyond this domain to social science research focused on the lived experiences of children and adolescents with disabilities. Such methodologies have the potential to inform and transform research across a spectrum of fields, including but not limited to accessibility, design, social policy, and healthcare.

Limitations

The outcomes of our scoping review relied on the information reported in the articles, which, in some cases was unclear for characteristics such as sample sizes, participant demographics, and description of methods in which students with disability engaged. A more detailed investigation is required to better understand why studies that engaged supplementary activities to interviews most commonly involved students with ASD. The lack of a consensus definition on what constitutes research with or by children limits our classification in this review, which similarly relied on our interpretation of this conceptual framework (Christensen & James, 2008; Hart, 1992; Mason & Watson, 2014). Similarly to the empirical study that guided our analysis (Njelesani et al., 2022), we did not conduct an extensive analysis of the benefits derived from research by students with disability, partly because of the very small number of studies shown to take this approach, and partly because of their methodological similarity to, for example, studies using a mosaic approach.

Conclusion

This review focused on qualitative education research involving school students with disability, with a specific focus on research with and by, rather than on, these students. The lack of consensus on what constitutes research with or by approaches led us to define the former as studies using qualitative methods that enable students with disability to actively contribute their views, concerns and experiences of the issue being studied, and the latter as studies in which these students were involved in decision-making about the research aims, processes and dissemination of outcomes. We distinguished the range of arts- and play-based activities used in these studies as either prompts to elicit student views in interviews and focus groups, or supplementary methods that generated data to be interpreted, analysed and included in the outcomes.

The primary finding of our review is that qualitative education research involving students with disability exists on a continuum of methodological participatory activity, ranging from minimal—individual and focus group interviews in which students with disability respond to pre-determined, researcher-controlled questions—to the use of arts- and play-based activities that function as prompts to elicit student views in such interviews, to a participatory approach in which arts- and play-based activities are used as sufficiently flexible research methods to prioritise accessibility, choice and support. Irrespective of where they sit on this continuum, the studies show promise in their use of diverse, integrated methods that allow for a richer exploration of the education experiences of students with disability.

Students with ASD were included as participants more than those with any other type of disability. The reasons why require further investigation. The methodological approaches are fairly evenly distributed across the period reviewed, and most studies are set in secondary schools, rather than primary or pre-schools. The geographical location of the two research by studies in Asia was somewhat surprising, although the inclusion of more boys than girls in participant samples was not. The focus on inclusion and wellbeing, rather than curriculum areas such as literacy and numeracy, was unexpected, given the study context in schools.

Overall, the scoping review has provided insights into the state of qualitative education research and emphasises the need for more inclusive research methodologies to investigate how students with disability learn in specific curriculum areas, rather than how they experience schooling in terms of inclusion or social wellbeing. Ultimately this work contributes to the ongoing effort to amplify the voices of students with disability to improve educational experiences for all children.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Kirsty Young

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Inclusion of Students with Disability in Qualitative Education Research – A Scoping Review

Abstract

Keywords

Introduction

Conceptual Framework: Research on, with and by Children

Methodology

Research Question and Review Purpose, Search Terms and Procedures

Data Extraction Procedures and Analysis

Results

Study Selection Results

Characteristics of Included Studies

Research with and by Students with Disability

Methods by Year of Publication

Methods by Study Location

Methods by School Context

Methods by Sample Size and Demographics

Methods by Disability

Methods by Study Aim

Discussion

Continuum of Methodological Participation by SWD

Strategies to Support Students with Disability to Participate in Interviews and Focus Groups

Supplementary Arts- or Play-Based Research Activities that Generate Data

Implications for Future Research

Limitations

Conclusion

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iD

References