Abstract
The voices of learning-disabled children and young people are rarely heard in qualitative research, particularly when they have complex communication needs. The current study was motivated by a desire to identify and co-produce effective and ethical qualitative research methods that would be capable of supporting the inclusion of this group of children and young people. We interviewed 12 parents of children with chromosomal learning disabilities and 6 professionals working with learning-disabled children, and we also observed 9 learning-disabled children and young people in classroom settings in order to develop methodological recommendations. Transcripts and field notes from these (n = 27) interviews and observations were analysed using Template Analysis, supplemented with reflexive Thematic Analysis. We identified ideas regarding the most effective communication and data collection strategies for this group; thoughts on the challenges to including learning-disabled voices in research; ethical considerations and the characteristics and experience required to be an effective researcher in this area. There was a good consensus that it would be highly valuable to develop more innovative and inclusive qualitative research methods for this group of people, and that it is vital that a careful, ethical and co-produced approach is taken to this endeavour. The next step will be to use these proposals to explore the issue with learning-disabled children and young people themselves.
Keywords
Introduction
Historically, children have been seen as research subjects rather than active participants. Researchers have tended to use observational data or adult reports rather than children’s perceptions of their own experiences and this has led to an incomplete understanding of children’s lives. This situation has improved as policies such as the UN Convention on the Rights of the Child (UNCRC, Unicef, 1989) have made clear that children capable of forming their own views should be allowed to express them. Consequently, a growing body of literature has approached children as ‘experts’ on their own lives. This has led to a methodological shift, with researchers adapting traditional data-collection techniques to be more appropriate for children (Fraser, 2004; Punch, 2002). However, it remains true that not all children’s voices are captured equally, with some - including those of learning-disabled children - remaining too often unheard (Curran et al., 2013; Rix et al., 2020).
Lundy (2007) made a case that, even with this methodological shift, the concept of child or student ‘voice’ is problematic because it too often encourages a tokenistic approach to inclusion, rather than engaging with the legal right to be heard that Article 12 of the UNCRC was designed to confer. Taken together with the UN Convention on the Rights of Persons with Disabilities (UNCRPD, 2006), which also focused squarely on inclusion, the UNCRC provides a powerful case for identifying effective ways of supporting learning-disabled children and young people (CYP) to engage with their right to be heard. Lundy (2007) reconceptualised Article 12 as having four key requirements in order to be enacted in a meaningful way: space, voice, audience and influence. Space (a genuine opportunity to express a view) and voice (being facilitated to express that view) are the components that are of most relevance to the current study. Audience and influence refer to what happens with the views that have been garnered and lie beyond the scope of this study. The UN’s Committee on the Rights of the Child pointed directly to the importance of enacting this right with disabled children on the basis that they are too often disadvantaged by a greater than average level of adult unwillingness to accept their competence to form and express meaningful views (1997, para 334, as cited in Lundy, 2007). Therefore, there is a legal as well as a social and personal imperative to create ways in which a diverse array of learning-disabled CYP who are capable of forming their own views can be supported to express those views and to have them heard, should they choose to do so. This approach is well aligned with the Disability Rights Movement’s slogan of: Nothing about us, without us and with ideas from Universal Design for Learning (Capp, 2017) and ‘inclusion as a process’ (Quirke et al., 2022).
A Note on Terminology
In this paper we refer to ‘learning-disabled’ children and young people as this is the dominant and preferred terminology in the UK, the site of our study. In the UK the term ‘learning-disabled’ refers to individuals with lifelong conditions that have a significant impact on their capacity to process complex information and to live independently. These individuals are the focus of our research. We acknowledge, however, that alternative terms such as ‘intellectual disability’ are more common in other countries and that in these settings ‘learning disability’ can be used to represent what is known as a ‘specific learning difficulty’ in the UK (e.g., dyslexia or dyscalculia). Children and young people with such specific learning difficulties are not the focus of the current study.
Voice in Research
In the last 30 years there has been a gradual and welcome shift from working ‘on’ to working ‘with’ seldom-heard communities, including learning-disabled adults (Montgomery et al., 2022; Nind, 2016). It has also been increasingly acknowledged that listening to children’s and young people’s voices in areas including law, safeguarding, healthcare and education (Brady et al., 2023; Cossar et al., 2016; Lundqvist, 2016; Madden et al., 2016; Watkins, 2016) is invaluable in eliciting what is important to them, as experts on their own lives (Sun et al., 2023).
However, in spite of Lundy’s (2007) advice almost two decades ago, child voice in research too often remains tokenistic (Messiou, 2019; Sargeant & Gillett-Swan, 2015; Urbina-Garcia et al., 2022) and suppressed (Gillett‐Swan & Sargeant, 2018). This may be due to all children being viewed as vulnerable (Aldridge, 2017; Sun et al., 2023) which in turn may limit their agency (Dockett & Perry, 2011) and their opportunity to express their views on matters that are important to them, by triggering rigorous gatekeeping practices (Gross-Manos et al., 2021; Lees et al., 2017). As noted above, this is even more strongly the case for learning-disabled CYP who are affected by a widespread view that they are helpless and lacking in capacity (James, 1993; Stafford, 2017). This renders these CYP “multiply marginalised” (Parsons et al., 2021, p. 163).
While it is vital from an ethical perspective for researchers to make judgements about participant capacity and vulnerability, too many of these decisions are rooted in assumptions and stereotypes rather than in evidence. Critical disability studies have challenged assumptions about disabled children’s capacity and shown that it is possible to work with disabled CYP to co-produce research as long as the research approach is thoughtfully and appropriately designed (Goodley & Runswick-Cole, 2012; Mallett & Runswick-Cole, 2014). Some examples of what these studies have tried to understand and mitigate include: dynamics of research in the family home (Abbott, 2013), tensions around power and ethics in ethnographic research with CYP (Davis et al., 2008), support needed for disabled CYP to participate in decision making (Franklin & Sloper, 2009) and the promotion of equal research relationships (Holt, 2004). Considerations like these are central to the current study and, we would argue, are also central to the inclusion of a much wider array of seldom heard voices in research.
Children with Learning Disabilities
Research with learning-disabled CYP is relatively scarce because, as noted above, they are too rarely seen as legitimate or accessible study participants (Scott-Barrett et al., 2019). Researchers tend to make assumptions about the capacity of learning-disabled individuals to comprehend and communicate (Beresford, 2012; Davis, 2017) and believe that such research would simply be too difficult (de Haas et al., 2022). This has led to a shortage of studies that engage directly with learning-disabled CYP. Furthermore, in the studies that do exist, there are signs that the data-collection methods used are often unlikely to support meaningful engagement (Cocks, 2008; Harrington et al., 2014). That said, it is important to acknowledge that there is a great deal of variability within the learning-disabled population, and that some CYP will be able to access traditional qualitative methods as long as reasonable adjustments are put in place. For instance, it might be vital for interviewers to be experienced in communicating with learning-disabled CYP and, potentially, to be familiar with the individual participants. For others, however, traditional approaches such as interviews are unlikely to be inclusive, and alternatives need to be considered.
Challenges and Barriers
Learning-disabled CYP may communicate through speech but also, or alternatively, through body language, gestures, or augmented and alternative communication (AAC) strategies. Traditional qualitative data-collection techniques rely heavily on oral language, with data often collected through interviews or focus groups. These methods are likely to be inappropriate when working with many learning-disabled CYP because of their cognitive and communication profiles. For example, children with Down Syndrome are known to often struggle with sustained attention due to their executive functioning profile (Costanzo et al., 2013). This suggests that accessing traditional methods is likely to be challenging for many learning-disabled CYP and that methods tailored to their strengths are required although, as noted above, traditional methods may suit some learning disabled CYP if appropriate reasonable adjustments can be made to meet their individual needs.
A further challenge is the diversity of communication profiles and needs found among learning-disabled individuals, including those who are non-speaking or minimally speaking (Cocks, 2008). Learning-disabled CYP may also have diverse physical needs that require methods to be adjusted on an individual basis. This diversity of needs, even among those with the same diagnosis (Stafford, 2013), represents a practical challenge to researchers because a huge amount of flexibility is needed to take a genuinely inclusive approach (Bailey et al., 2015). However, this challenge also presents the research community with an opportunity to improve research by making it more accessible, thereby contributing to a more inclusive society.
What Works Well?
Research has shown that for CYP with learning disabilities, including complex communication needs, providing the right support and offering a flexible and tailored approach can be useful for eliciting first-person perspectives. Getting to know children and their families has been shown to be a crucial part of the process (Abbott, 2013). Given the diverse needs of learning-disabled CYP it is clear that understanding individual communication preferences and needs is essential to an inclusive research approach (Stafford, 2017). Furthermore, collaboration with key adults has been found to be important to ensure that each young person experiences a safe, accessible and ethical research encounter. Teachman and Gibson (2013) found that speaking with parents before interviews allowed them to integrate children’s preferred modes of communication and preferences into the interview design, and Powell et al. (2024) highlight that co-design with parents and clinicians can help to develop engaging and accessible tools.
Many forms of participatory research, including play-based methods and creative ethnographic research, have been found to enable learning-disabled CYP to engage (Davis, 2017; Gillies & Robinson, 2012; Greenstein, 2014). Participatory methods are usually flexible and recognise children’s diverse forms of expression (Goodley & Runswick-Cole, 2012). Stafford (2017), for example, tailored activity packs to the needs of children with physical disabilities by adding in easy-grip pencils and adapted craft materials.
Similarly, having a toolkit of interview techniques, including puppets, vignettes about CYP with similar disabilities, and photographs depicting children’s geographies, have all been found to support learning-disabled CYP’s involvement in research (Teachman & Gibson, 2013). A study exploring researchers’ experiences of opportunities and challenges when working with autistic young people highlighted how flexible and diverse methods were crucial to successful engagement (Scott-Barrett et al., 2019). Not only did offering multiple methods allow children to engage with research in a way they enjoyed, but it also represented an ethical approach in allowing young people autonomy over whether and how to take part. Similarly, Teachman and Gibson (2013) described how using a toolbox of interview methods allowed researchers to adapt their method of data collection according to the individual differences among their learning-disabled participants. However, neither study gave learning-disabled CYP a voice in the design of these promising data-collection methodologies.
Beyond considering effective practical strategies, Nind (2016) has explored how inclusive research approaches can have learning and empowerment benefits for both learning-disabled research participants and academic researchers, as well as for facilitators or support workers who are engaged in the process. Drawing on Biesta’s (2006) multi-dimensional model of lifelong learning, Nind (2016) makes a strong case that inclusive research with the learning-disabled community has economic, personal and democratic learning benefits and that successful approaches are likely to be learner-centred, and to consider everybody involved as a learner. Education and educators can play a key role in supporting the meaningful engagement of learning-disabled individuals in research-situated learning, therefore supporting lifelong learning as well as the contribution of learning-disabled individuals to research that affects them.
Ethics
Although most research comes with ethical challenges, these are amplified when an individuals capacity to provide informed consent or assent is complex, as is likely to be the case with many learning-disabled CYP. There is a risk of a larger power imbalance between participants and researchers when working with all children (Punch, 2002). This is enhanced when working with learning-disabled CYP, who may be more vulnerable due to cognitive and communication profiles which may not align with their chronological age (Cocks, 2006). Boundaries around privacy and trust might be blurred for these individuals as they are likely to be accustomed to working with and relying on multiple adults. This may make some overly trusting of researchers, and unguarded about sharing intimate, personal insights into their worldviews. Indeed, this openness is a feature of some diagnoses, such as Williams Syndrome. Although this may be beneficial in terms of eliciting experiences, it opens up ethical challenges and potential safeguarding concerns, which the research team must address. For example, some CYP may believe they have to participate in a research activity because an adult has asked them to do so. Therefore, it is exceptionally important that consent or assent is gained flexibly and inclusively, potentially in multiple ways and at regular intervals (Scott-Barrett et al., 2019). Loyd (2013) navigated these challenges by developing an information booklet using words, pictures and symbols to assess young people’s assent to participate, drawing on not only their expressed assent but the interpretation of key adults regarding whether their behaviour implied they may no longer want to take part.
Furthermore, it is likely that learning-disabled CYP will often engage in research with the support of a key adult. Power differentials have been identified in families with learning-disabled children, with family members sometimes speaking for or over the children (Davis, 2017). This is likely to be amplified by research being carried out in the home (Teachman & Gibson, 2013). Although it is clear that involving families and key adults is imperative to conducting safe and ethical research with these CYP, care must be taken that no child’s voice is overshadowed in this way.
It is also important, however, to note that in a genuinely inclusive research process while learning-disabled participants must be protected - as is the case with all research participants - they must also be respected and recognised as bringing their own expertise to the research process and as entering a site of learning (often a research conversation of some type) with the researchers in a collegial rather than a hierarchical way (Nind, 2016; Quirke et al., 2022).
The Current Study
Our study explores learning-disabled CYP’s communication needs and preferences and how they can be effectively incorporated within an inclusive research design. We have focused on CYP with learning disabilities with a known genetic or chromosomal origin because they cover a wide range of cognitive and communication needs, but the findings are likely to be relevant to learning-disabled CYP more generally.
We asked: How can we include the voices of learning-disabled CYP in research?
Our planned next step, beyond this study, is to use the learning we gain to ask learning-disabled CYP themselves whether we have identified optimal approaches to genuinely inclusive research. It is a limitation of our design that it does not directly include the voices of learning-disabled CYP, but this staged approach is necessary for us to be able to ensure we draw on best practice when engaging in the conversations that will form the next step in our programme of research. By identifying best practice in supporting diverse communication needs and preferences, and taking a user-friendly, non-tokenistic and ethical approach to data collection, we aim to enhance our capacity to engage positively in fruitful co-production with learning-disabled CYP themselves (Atkin et al., 2020).
Methods
Participants
Our findings draw on three sets of UK data: interviews with professionals (n = 6), interviews with parents (n = 12) and observations of children and young people with learning disabilities (n = 9). In total, we had data from 27 participants.
We recruited professionals using a snowball sampling strategy and included one Speech and Language Therapist (SaLT), one principal teacher, one specialist Teaching Assistant and three Special Educational Needs and Disabilities Coordinators. Interviews were conducted in November/December 2023. We interviewed parents of CYP with chromosomal learning disabilities aged 2–19 years, recruited through closed special-interest groups including a national Down Syndrome association, a charity focused on families with a member who has Patau’s Syndrome or Edwards’ Syndrome and an organisation focused on understanding rare chromosomal and genetic conditions. Their children had diagnoses including: Down Syndrome, 5q duplication, 3 genes missing (SWAN), Edwards Syndrome and Phelan McDermid Syndrome. Interviews took place in July/August 2023. Our observations of nine CYP with learning disabilities of a known genetic or chromosomal origin took place in January/February 2024 in two special schools in the north of England. All child participants were aged between 12 and 14 years (7F/2M) and had diagnoses including: Cardiofaciocutaneous (CFC) syndrome, Down Syndrome, Rubinstein-Taybi Syndrome, and Coffin Siris Syndrome. Our experience of seeking access to these participants was very positive, with school leaders and staff warmly supporting the importance of the research and welcoming our team (all members of which had undergone appropriate checks before visiting the schools). It is worth noting, however, that our team had existing relationships with both schools and was already engaged in a conversation with them about their priorities for research. Collaboratively co-producing a research agenda with those the research is designed to support represents a constructive way of reassuring gatekeepers about the benefits of becoming involved.
Data-Collection Procedures and Tools
Parents and professionals were interviewed using semi-structured interview schedules. For professionals, the interview was entirely focused on understanding how to incorporate children and young people’s voices into research. Interviews with parents included a sub-section on barriers to, and facilitators of, the inclusion of learning-disabled CYP (Fields & Asbury, 2024). Interviews took place online and were conducted by the first author. All interviews were audio-recorded and transcribed by an approved transcription service. Both sets of participants were given the opportunity to check their transcript prior to full anonymisation and one participant chose to do so. The mean interview length was 62 min for parents (range: 39–106) and 54 min for professionals (range: 38–69).
Observations took place in two special schools, with teams of two researchers making two half-day visits to each school. Observational, methodological, and personal field notes were taken during the observations (Baker, 2006): • Observational notes detailed what was seen in order to identify and document the communication preferences and choices of CYP and the adults supporting them. • Methodological notes were made to inform future observational studies with this population. • Personal notes were taken to ensure that any emotive responses were recorded and critical self-reflection and team discussion took place to limit bias in interpreting the data.
We developed a grid to document and classify observations. Our grid was adapted from the COSMIC measure, an observational tool for exploring children’s communication (Pasco et al., 2008). During visits, the researchers observed each participant for approximately 20 min (in two, separate 10-min slots). Observations were carried out in a range of settings in the school, including the classroom, lunch room, and outside during a forest school-style session to capture communication in a range of situations. Researchers debriefed with each other after each session in school in order to discuss what had been observed and how it might be interpreted in relation to the research question. Observation notes and researcher reflections were then anonymised and analysed together with the rest of the study data. Parents provided information about their child’s age, sex and diagnosis, although this information was not provided in three cases (Table 1).
Analysis
All data were analysed using Template Analysis (King, 2004; Pandey, 2016). A template was developed using a priori themes that directly reflected the questions asked in the professional and parent interview schedules. For parent and professional data, two members of the team (first and last authors) independently coded three transcripts for parents and two for professionals using this template, adding all potential codes under each a priori theme. Both codes and themes were then discussed and agreed changes were documented in a revised template before coding further transcripts and going through the same process again. Observational field notes were independently coded by two members of the team (second and first authors) and the same iterative process of discussion and revision in relation to the template was undertaken. In total there were five iterations of the template before the final version was agreed. At this stage the data were analysed to develop sub-themes within each of the agreed template themes, using reflexive Thematic Analysis (Braun, 2021; King, 2024). All materials used in the project can be found on our OSF page.
Ethics
The study was approved by the ethics committee of the research team’s University Department (Ref: 23/24 Data protection registration number: Z4855807 and Ref: FC23/4 Data protection registration number: Z4855807). Informed consent was sought and received from parent interviewees, professional interviewees, schools in which the observations took place and parents of the observed children. The CYP did not provide formal consent but were informed about the observation in ways tailored to them, and ongoing assent was sought. It is important in this context that child participants are made aware that the research process is separate to their school activities, which they may be encouraged to engage in regardless of personal preference. We addressed this by being introduced by staff as researchers who were in class to learn about how the CYP liked to communicate with each other and with their teachers, and we answered any questions they raised directly with us. In this particular study we were not asking the CYP to do anything outside of their normal practice but it is an important consideration for studies that go beyond observational data.
Observations were only made of nominated CYP who met our criteria and for whom we had parental consent. However, other children and staff members were also included in the study as anonymous communication partners to these target participants. For this reason, parents of all CYP and staff in each class were asked to provide opt-out consent. Staff were asked to make the researchers aware of any CYP who had been opted out by their parents before the observations took place. No children or staff opted out of the study. No identifying information about staff members or other CYP in the classroom was recorded in order to ensure anonymity.
Having unfamiliar adults in the room may be distressing to some CYP. To mitigate this, all research team members were experienced in working with young people with additional needs, and school staff were in the room to support CYP if they became upset. Researchers were primed to be sensitive to participants throughout, and to stop observations immediately if any student showed signs of discomfort or of no longer wanting to participate or be observed. Due to the nature of special education, CYP were familiar with having unfamiliar adult visitors in their classroom. This may have reduced the impact of the researchers’ presence and, in turn, the risk of children changing their behaviour (e.g., a Hawthorne effect). We did not experience the target CYP or their communication partners becoming distressed or appearing to withdraw their assent to participate.
Positionality and Reflexivity Statement
All authors had personal and/or professional experience with learning-disabled CYP with a range of communication profiles and this is likely to have been reflected in how we viewed and interpreted interactions and, indeed, interview data. To some extent researcher subjectivity is a feature rather than a bug of qualitative research and of reflexive thematic analysis in particular. We embraced this by engaging in self-reflection in our notes and by discussing all research encounters as a team, checking for different perspectives on the research encounters we discussed. Our team-based approach enabled us to remain reflexive while also mitigating against any inappropriate individual observer bias.
All members of the team came from the shared starting point that it is important to give learning-disabled CYP the opportunity for their voices to be heard, and that learning-disabled individuals, their families and wider society will benefit from a more inclusive approach. We were conscious that this starting point had the potential to induce social desirability bias in our participants (Bergen & Labonté, 2020). In order to counteract this in our interviews we used an agreed semi-structured schedule with neutrally worded questions and spent time building rapport with each participant, with a view to making them feel sufficiently comfortable to express their views openly and honestly. We were also conscious of our potential impact on how the children and young people interacted during our observations, a Hawthorne effect, and we addressed this by spending time in the classroom, allowing the CYP to become used to us, before beginning our observations during which we were as unobtrusive as possible.
Results and Discussion
Theme 1: Effective Communication Strategies and Data-Collection Tools
Building and Nurturing Relationships that Support Effective Communication
The strongest message from parents and professionals was that the feasibility and effectiveness of data collection with learning-disabled CYP depends on successfully building trust and rapport: “You’ve got to build trust, because trust is a massive one for them … because they will have had people not be great with them” (Professional4). The most often mentioned strategy for achieving trust and rapport involved researchers spending time getting to know participants before beginning data collection: “Let them know who you are. Let them see your face beforehand” (Professional2). This aligns with findings from Abbott (2013) who emphasised the importance of building trust and learning about individual needs prior to data collection. Some participants felt that a light-touch approach to relationship building would be enough while others saw a need for more extensive engagement. It is likely that these different positions represent the needs of particular CYP that participants had in mind. This is important to consider as it is likely that some CYP will be open to building a trusted relationship, and to viewing a researcher as “a safe adult” (Professional1) more quickly than others and that this will require flexibility on the part of the researcher: to really know the child, you need to know what it is that they’re interested in, you need to be child-led. So, I mean blue-sky thinking, half an hour, an hour of just sitting and being with that child and finding out about them (Professional2)
Participants also advocated strongly for the importance of researcher consistency: when they have that constant change of face it can be very unnerving and actually you’re just back to square one then, all those little nuances you’ve picked up on your visit the next person isn’t going to know and the child isn’t going to be as comfortable with you (Professional3)
The levels of trust and personalisation needed to do this research well mean that, if the work is longitudinal, the child should work with a single researcher wherever possible.
Along with planning sufficient time to build trust with the CYP, participants advocated for collecting data face-to-face and ensuring that all interactions are positive: It would have to be done in a positive way so it's about everything you can do not highlighting what you can't do. Because if you highlight … what can't you do, or your differences, [Name] will close down straight away” (Parent51)
Being aware of, and catering to, each child’s communication needs and preferences will support the building of trust that will be essential to optimal data collection, as also found by Scott-Barrett et al. (2019). While successfully building trust and rapport is integral to all qualitative research, our findings suggest that this need is likely to be amplified when working with many learning-disabled CYP due to issues related to comprehension, processing speed, communication challenges, prior experience and idiosyncratic needs. It is important to note, however, that there will be significant variability in the population and, as with all qualitative research, sensitivity to individuals is key to the success of each research encounter.
Optimal Environment
Parents and professionals expressed a strong preference for conducting research in schools. This was borne out of the perceived importance of a familiar place: I know a lot of children that would do really well in school, I think, and I think parents would like that as well because they know that they’re so well managed in school and actually the staff are looking out for their wellbeing in terms of these kind of things. And staff know them well enough to be like, “No, this is it. He’s off. He’s out. Interview over, essentially”. (Professional2)
There was a feeling among participants that most CYP would be more likely to take engagement with a researcher seriously in the school environment: If his teacher was to introduce someone and say, “This person is going to sit with you and do some work,” or whatever, he would have absolutely no issue. If someone was to come to our home and do it, he would just run away and play. (Parent10)
As noted above though, it is important that the CYP is made aware that the research process is not obligatory in the way that a piece of schoolwork might be considered to be. This view that school is the best place for research to take place was tempered by an acknowledgement that we should expect differences between children and that some may need alternative approaches, such as a home visit.
Participants also identified ways to smooth the introduction of research into the school setting. For example, timings were seen as important: you definitely need to time it right because if they’re hungry, they’re not going to manage an interview, or if they’re tired. (Professional4)
Similarly, field notes described how, on one occasion: ‘the class was more unsettled than usual as they had a supply teaching assistant in and a TA from a different class which was unsettling the children’. Participants also emphasised the importance of getting the environment right. For example, there was a lot of support for setting up the research in a play- or activity-based way: “if it is a desk and a chair, if a student’s had really negative, traumatic experiences in schools before, already you’re off on the back foot and they’re probably not going to engage” (Professional2).
Participants felt the approach should be highly personalised to each child based on knowledge of what they enjoy: “you want to make it fun for that child, so you’re going to want to have an idea of things that they enjoy and activities they like to do … because that’s when they’re going to engage with you” (Professional1).
Participants also explained that, even in an optimal environment, it is important to keep data collection brief, bearing in mind the needs and capacities of individual participants: “I think keeping everything super-visual, short chunks, everything in short bursts, you know, lowering those expectations in terms of what you’re going to get in one session” (Professional2).
The consensus was that, for a majority of learning-disabled CYP, data collection is likely to work best in schools and that research teams should liaise very closely with school staff to ensure that research interactions take place in an environment that feels safe and motivating to each child. Professional and parent participant requests for researchers to provide multiple ways to present research information to learning-disabled CYP, to provide creative ways to encourage and support them to engage, and to provide multiple ways for them to show their understanding bears a strong resemblance to the Universal Design for Learning (UDL) framework (Capp, 2017), as advocated by Quirke et al., 2022. Indeed, the application of this approach could potentially be beneficial for non-disabled participants too, making research approaches more inclusive and adaptable for all.
Recommended Communication Strategies
Participants were unanimous that optimal communication strategies differ between children and that a standardised approach cannot work. Instead, researchers wishing to build trusted relationships with learning-disabled CYP, in order to include them in research, will need to take a toolbox approach. This aligns well with recommendations from previous studies (Stafford, 2017; Teachman & Gibson, 2013).
Participants saw the key starting point for this as learning from people who know the child well, the team around them in school and also family members. They pointed out that each child should have a written communication profile and that this offers an excellent initial insight into their communication needs and preferences. By discussing this profile with the child’s SaLT, along with other relevant information such as special interests, and sharing the research aims with them, it should be possible to develop an appropriately tailored approach. We’ll sit down with the team that that child’s involved with. We’ll give you a good insight into what you’re likely to see and then we’ll give you access to that child to build the relationship and then you can take your research forward once that’s been done. (Professional1)
The caveat here is that the professional involved would need to have time to engage in this activity which will have resourcing implications for both the research team and the school. Researchers will need to budget for buying out professionals’ time and building in sufficient time to take the research process at the participants’ pace.
One participant described how, for some non-speaking or minimally speaking participants, it may also be possible to share noise dictionaries to help researchers interpret the nonverbal noises some children make for inclusion in the data. I’ve had a … girl who used to make the noise of Crazy Frog, so she would run around and she would just go, “Ding, ding, ding, ding,” and that meant she was happy. But if it dropped two notes, it wasn’t happy. (Professional1)
Another very strong suggestion was to make use of, and adapt, existing communication tools that work well in schools and that CYP are likely to be familiar with. Some recommendations were low- or no-tech (although demanding in terms of knowledge and skill) such as Talking Mats, social stories, choice boards, PECS and Makaton. Others were hi-tech, such as tablet-based communication systems, switches, and eye-gaze systems. An example of AAC being used to elicit the child’s view was documented in field notes from the observational study: ‘Whole class asked by teacher to say how they feel. Child uses device to ask the teacher how they feel and teacher points to “happy”’ (C003)
Combining knowledge of the child with skilled use by the researcher of a toolbox of communication tools and approaches is likely to open the door to these young voices being heard in research (Stafford, 2017; Teachman & Gibson, 2013).
Recommended Data-Collection Strategies
The data-collection strategies recommended by participants closely mirrored the communication strategies described in the previous sub-theme. For example, there was good support for strategies that reduce language burden e.g., asking children to take and share photographs: “We’ve got cameras and non-verbal children take photos of things all the time” (Professional5). Arts-based approaches were also recommended: “for some of our students with physical difficulties, music and art kind of opens things up for them really and you’ll see very different responses in terms of different tempos to music, for instance, different colours used in artwork” (Professional2). Guided interactive screen-based activities were also recommended as being “easier to maintain her interest and her attention” (Parent61). By contrast, interviews and diaries were deemed inaccessible for most students: “as soon as you put a pencil and paper down you’ve already put a barrier in front of them before you’ve asked them to do anything” (Professional1).
Importantly, participants acknowledged that none of the approaches would work for everyone and some of the less preferred strategies would be ideal for certain children. For example, one participant said some children could cope well with providing diary data if someone else wrote down their entries. Researchers were encouraged to base their approach on good knowledge of the child, and to make it personalised and fun, something akin to strategies used within a UDL framework (Capp, 2017).
Theme 2: Challenges of Including These Children’s Voices in Research
Communication Needs
Adult participants identified children’s own communication needs and learning profiles as barriers to their voices being included in research. Participants were quick to point out that some of the children under discussion have little or no verbal communication, some struggle with reading, some with writing and some with comprehension. It was clear from both adult interviews and child observations that learning-disabled CYP need innovative approaches to research design and data collection and, importantly, that it will not be possible to standardise these approaches because of the high diversity of needs within this group.
One participant described how the two-way communication on which qualitative research depends is a ‘big ask’ for some of these children and young people: “it’s like asking me to make [a] presentation literally now in front of the United Nations. It’s too big” (Parent52). The point was also raised that influences which might not be especially significant in the general population can have a more profound impact on capacity for communication in children with complex needs, again making what might seem like a small request to researchers very challenging for participants: The situation when they might have a bad day, so … with my daughter, for example, having a cold would affect her greatly … it might affect her hearing, might affect her vision and how she is thinking. So she’s got problems with this already and extra … a mild cold on top of this makes things absolutely unbearable. (Parent52)
We heard about some children’s reliance on gestures, actions and noises, leading some to suggest that videoing interactions may be the best, or even the only, way to capture meaningful child voice data from some participants. It was also suggested that some children may need adults who know them very well to act as interpreters and that, in some cases, parental representation of their child’s voice may be the best available option.
Participants also discussed the importance of children being well-regulated and in a good position to be able to communicate as effectively as possible. Good strategies for supporting this were described, including AAC tools such as Talking Mats, Zones of Regulation and tablet-based communication resources. From a practical point of view, it was made clear that data collection might take several attempts as when children are struggling to self-regulate they are unlikely to be able to engage with research in a meaningful way. During the observation study we saw several clear examples of children who were struggling to self-regulate during individual lessons and were therefore unable to engage with their learning at that point. The following field notes represent observations of one child (C007) during one 10-min slot of a lesson focused on development from childhood to adulthood: Teaching Assistant (TA) is trying to get him to copy words onto the worksheet, but he doesn’t seem interested. Shouting ‘shut up’ (at no one in particular) when TA is trying to get him to copy the writing. Screwing up eyes, wriggling on seat, glasses half off face. TA gets him back on task but his face is almost on the table. She is asking him to write ‘taller’. He doesn’t want to but just keeps referring to the baby picture and saying ‘baby’. Then he shouts ‘shut up’ (at the teacher) and then repeats ‘baby’. Keeps wanting to talk about and write ‘baby’ and saying ‘shut up’ at regular intervals. Tells two other classmates to shut up. Engages in a call and response ‘shut up’ with a child at the other side of the room. Puts his voice to a higher pitch. Runs towards this other child and starts dancing around and saying ‘shut up’ and ‘stop it’. Sits on floor and starts blowing bits of paper around and then laughs and returns to seat. (C007)
It is very reasonable to expect similar experiences during data-collection activities and it will be important to use evidence-informed tools to encourage and support self-regulation as a key part of the research process.
Participants identified self-regulation as being important to data reliability. The issue of social desirability bias was raised in this regard, with one participant describing how some learning-disabled CYP may be particularly keen to please, partly due to a discrepancy between their developmental and chronological age: I do a lot of child voice within my class, but I do often wonder “how much of this is your opinion and how much of it is do you think I want that answer”, because they are so vulnerable and they are so cognitively young, they are still very much at a point where they want to feel loved and accepted (Professional1)
One participant pointed out that, due to challenges such as comprehension difficulties, it is likely that some data-collection activities will yield both unreliable and highly valuable data and that researchers will need to be sensitive to this and have strategies for identifying the most meaningful data: “you might ask her ten questions and get the real answer only for one question, but it would be really valuable information” (Parent52).
Finally, participants pointed out that some families, schools, and geographical areas have better access to communication training and resources than others: the actual teaching of how to use the technology can quite often differ from place to place and what’s available to children can differ place to place. I know at one point we had iGaze technology that then broke and has since not been replaced, but you think this was an amazing tool that we’ve introduced to these kids and worked with them with, but it’s now no longer available to them. (Professional1)
This is a challenge for researchers (as well as for CYP and those who support them) as it is not possible to expect the same strategies or capacities in every setting. This makes any level of generalisation in planning research a challenge, e.g., expecting to be able to share learning across two children with similar learning, communication and behaviour profiles across two different settings.
In summary, several key challenges linked to CYP’s communication needs were identified and these need to be taken seriously in any genuine attempt to enhance the inclusion of learning-disabled CYPs voices in qualitative research. However, it is important to acknowledge that researchers’ communication needs can also be seen as a constraint when they do not intersect neatly with the needs and preferences of the CYP participating in the research. It is therefore important to think carefully about the starting point for research design with this group, and to develop a genuinely participant-centred approach, rather than an approach that seeks to bring the participants as close as possible to the researchers’ ways of communicating. As far as possible researchers should step out of their comfort zones to meet participants in theirs, rather than the other way around. Co-production will be essential to doing this well.
Logistical and Practical Challenges
Two main sets of logistical and practical challenges were identified, relating to the need for a highly personalised and flexible approach to data collection, and the role of key adults in the child or young person’s life. Challenges related to personalisation were linked to the importance of having a relationship with the participants, as discussed in Theme 1, but also being able to access appropriate and diverse communication tools, the need for flexibility and the amount of time likely to be required to do this work well.
There are practical challenges associated with communicating with participants through accessible and preferred means. Professionals pointed out that the diversity of tools that learning-disabled CYP, and their parents and teachers, can access will require a huge amount of knowledge on the part of the research team to incorporate. It is unlikely that anyone but an experienced SaLT would have the requisite level of knowledge and skill - and even then there might be gaps - and this presents a substantial challenge to researchers interested in working in a meaningful way with this target population (Abbott, 2013). Collaborating closely with - and employing - SaLTs at every stage of the research process is therefore likely to be essential.
A further challenge identified by the participants related to the need to be flexible. This might involve gathering data in much smaller chunks than is typical, accepting that plans may often have to be cancelled and remade, and that unusual approaches might need to be taken in order to meet the CYP where they are. you might be lined up to see this child in school this afternoon and you step foot in the school and they say it’s not going to happen today. You know, “We’re not in a good place, we didn’t sleep last night, this situation has changed at home,” or, “We’re going to respite tonight and we’re really anxious about it”. Just thinking of those bigger pictures, you have to be so flexible. But, you know, going into a session knowing that these are the questions that I want to get answers to, these are the views that I want to obtain and actually being prepared to do anything and everything to get through to that. You know, you might end up sitting under the desk doing it. You might end up covered in Quavers [savoury snack] when you come out of the room, that’s just the nature of supporting these individuals. (Professional2)
It is also important to note that all of this takes time and this needs to be built into the research design and planning. Acknowledging that personalising research for this group will take unusually high levels of time and flexibility is key to the success of such projects. The additional time, flexibility, specialist expertise and diversity of resourcing required to do this research well is likely to also add significantly to the cost of it. An unintended consequence would be researchers engaging in even less research with this population because methodological rigour makes it unaffordable. As with all other studies, it is important to ensure high quality research that delivers value for money to funders. If an infrastructure that supports this kind of research can be established, with openly shared resources and guides, this will help to address the problem. In addition though, if funders genuinely want to do inclusive research then they need to accept that for some populations it will be a little more expensive, just as some other types of scientific research are expensive due to specialist equipment or knowledge needs.
Participants also spoke about how adults who know the child well can unwittingly act as a barrier to successful research, even when trying to help. The risk identified was of a teacher or parent speaking ‘for’ the child or young person: “adults that are involved with these kids are very eager to give their voice and what they think is right for the child, and it’s not from a bad place, it’s really from a place of care and compassion” (Professional1).
This has to be balanced against the need for them - in some cases or on some occasions - to help interpret the child’s communication or to help the child feel safe to communicate in the first place. This is likely to be a difficult line to tread for researchers, and addressing the challenge will require careful planning of appropriate and respectful strategies and training on how to include key adults without reducing opportunities for the child’s own voice to be heard and prioritised.
Child Capabilities and Preferences
A CYP’s learning disability has significant implications for their level of engagement with even very inclusively designed and accessible research, but limitations differ child by child, again supporting the clear need for a personalised rather than a standardised approach. Participants told us that some CYP would not be able to process complex questions and would only be able to engage with simple, concrete questions due to their cognitive capacity: “he wouldn’t really be able to tell you about anything very abstract” (Parent52). Others described barriers relating to factors including anxiety, something we saw evidence of in our observational study field notes: One of the children in the study did not engage with the majority of activities and sat at the back of the room. We were informed at the beginning of the session that he was anxious and was being supported to engage more in the classroom. (Child002)
Another factor that presented as a barrier was some CYP’s preference not to use formal communication tools, preferring their own idiosyncratic approach: They will fight you to not use the stuff. I often find by the time the kids get to us, and that’s at secondary [school], that they have their own communication style and they want you to learn their communication style (Professional1).
It will be important for researchers to spend time with the CYP they want to study to build a clear sense of how effectively they can engage and communicate their thoughts and feelings on a good day, and their preferences for how that communication happens. Data collection has to be expertly tailored to those capabilities and preferences if it is to be effective.
Theme 3: Ethical Considerations when Conducting Research with These Children and Young People (including Incentives)
Ethical Risks
Participants shared a unanimous view that there are no ethical barriers to including CYP’s voices in research “as long as the person is doing everything correctly and following all the safeguarding procedures” (Professional3). On the contrary, it was seen as unethical not to do so: “They’ve got a voice, haven’t they, and that needs… however difficult it is and however much you’ve got to change your approach, I think it’s important that they’re able to say things.” (Professional4).
That said, they did see research with, and about, learning-disabled CYP as highly important and valuable so long as researchers are aware of individual needs and mindful of prioritizing dignity, privacy, and safety in supporting this population to take part. This involves adapting consent/assent approaches to mitigate against the risk of causing distress to not only CYP but also their families: I would always invite parents, always … because you don’t want them at any point feeling shunned in any kind of way or that the research might be inappropriate in any kind of way. You want to be really transparent from start to finish. (Professional1)
Family involvement was recommended on the basis of transparency and because parents might have legitimate concerns about consenting to their child participating and may need to get to know the researchers and have an opportunity to ask questions because: “how do you know if you’re taking advantage of a non-verbal child?” (Professional5).
Participants therefore urged researchers to include families, while taking steps to centre the child’s voice, but also to be mindful of the unique needs that are inherent in their circumstances. Participants encouraged a trauma-informed approach to data collection and following up with participants afterwards. One talked about the need to support parents who became involved in the research, saying: I think that they might go some places that they might find challenging and I think you need to be prepared that you might have to offer support for those families and not just support for that day but support for those weeks after (Professional5).
Fewer participants identified risk of distress to child participants as long as proper safeguarding and tailoring is in place, and a positive approach is taken, as described in Themes 1 and 2. A bigger risk to CYP related to long-term data use and the child’s right to an open future: I think there’s probably quite a lot of benefits as long as… you know, I suppose it’s what you do with the data isn’t it? As long as it’s sort of put to good use and it’s actually analysed and acted upon. (Professional6)
This is a vital consideration in planning for data storage and management as well as dissemination, particularly in an era in which open research practices are encouraged.
Consent and Assent
Participants recognised the importance of including learning-disabled CYP’s voices in research, and therefore the importance of facilitating those CYP to be able to give their consent or assent to participate: We don’t want any of our students to feel like, yeah, there’s been any coercion or anything involved in that, and what we want is their voices but for them to understand the impacts further down the line of what they’ve done as well. (Professional2)
Across both groups there was clear agreement that consent/assent should be seen as an ongoing process rather than a one-off event, and field notes from our observational study provided a nice example of what assent to proceed ‘for the time being’ might look like: Points at my notebook (questioning eyes). I explain that our job is to learn how children talk to each other and that I had been writing down some of the things she said. I asked her if that was ok? She beamed. I showed her where I had written “more pasta” and “no pear” and she looked delighted. I asked her again if it was ok and she really grinned. (C008)
We were advised to work closely with SaLTs to identify inclusive approaches to explaining what participation in research would involve and to facilitate proactive consent (or refusal) to take part. Furthermore, Talking Mats and switches were identified as particularly good potential strategies that many CYP, especially those in special education, might be familiar with. These recommendations align well with findings from other studies which have also supported the importance of rooting consent and assent in a creative and bespoke approach (e.g., Loyd, 2013). This could involve developing a suite of informed consent approaches that might range from an ‘easy read’ version of an informed consent form through social stories, videos, symbol-based documents, picture-based documents or app-based accounts etc. This is one example of how ethical and respectful research with this group is likely to be more time-consuming and resource-intensive than would be the case with non-learning-disabled CYP but will make it possible to hear voices that have largely been ignored.
In addition to taking measures to ensure understanding of the study as far as possible, consent or assent should be considered as an ongoing process and our data suggest that researchers have an obligation to look for any sign that consent or assent may have been withdrawn during data collection, and to draw on key adults who may have deeper insight into when a child may have become unwilling to continue, either permanently or just for the time being, as suggested by Scott-Barrett et al. (2019).
In summary, all agreed that the researchers had a responsibility to ensure - as far as possible - that participants were happy to engage at the point of every interaction or activity, and to proactively look for indications that consent or assent had been withdrawn or that participants felt coerced (Cocks, 2006). Having support and at least peripheral involvement from people who know the CYP well, and are experienced in their communication patterns, is likely to be a vital element of safeguarding participants.
Incentives
We asked professionals and parents if CYP should be offered an incentive for participating in research and, if so, what they might benefit from. The general view was that participants should be compensated as a means of valuing their contribution. There was also a consensus that any incentive or compensation should be meaningful to the child and recognition that this poses practical challenges because “motivators for children are all different” (Professional5). Also, there was a strong view that any gift should be used as a thank you rather than an incentive i.e. it should only be introduced after the research has taken place, not as a motivator for becoming involved: “I would be less inclined to offer a reward as an incentive because I would want to know that they really wanted to do it and it wasn’t because they want whatever is at the other side of it” (Professional1). Participants felt strongly that this would be more ethical and would avoid the risk of coercing CYP to participate in a study even if they would not otherwise choose to.
An alternative view was also expressed, namely that if the data-collection activities are sufficiently well designed, they should be intrinsically rewarding and enjoyable for the CYP, and no further compensation should be needed. Another, perhaps complementary, view was that it might be more ethical to compensate the school and ask them to spend the compensation on something that would benefit the CYP who took part in the study.
Theme 4: Essential Qualities in Researchers Collecting Data from Learning-Disabled CYP
Experiences and Skills
Participants considered it highly important that researchers working with learning-disabled CYP have prior experience of this group or, if not, a willingness to gain such experience: you’ve … got to be a researcher who is super-passionate about that area. And I think to be super-passionate about that area, you’ve probably been influenced by a young person or an adult with learning disabilities to kind of gain that momentum and excitement about it. (Professional2)
Participants believed such experience would be important in equipping researchers with the disability-specific knowledge they would need to do their job well. For example, one participant talked about the benefits of familiarity with Makaton: “I would absolutely say Makaton. Like it would be if you want to get anything out of [Name], then speaking her language basically” (Parent58).
While parents and professionals understood that it would be unreasonable to expect a single researcher to be familiar with all types of communication, they thought an openness to learning, based on what each child needs or prefers, was important. They pointed out that willingness to engage with the professionals around the child would be well received: Reaching out to the SaLTs that are involved with the child. You know, we’re usually a pretty open bunch. We’re usually very happy to sit down and talk with anybody about our students and just sort of having that quick conversation. “Right, this is the activity I’m thinking. How do you think we could facilitate communication?” And we’ve got so many resources we can share and things. (Professional2)
Personal Characteristics
Participants expressed very clear views on the personal characteristics likely to help a research professional gain the trust of learning-disabled CYP, and therefore elicit their voices. Researchers would need to be “open and non-judgmental” (Professional2), as well as respectful and patient: “Make them feel like they’re a person and opinions are valued” (Parent60). They also felt that the ideal researcher would need to be resilient because the work is likely to be highly challenging at times: You’re not looking for somebody who’s fancy, you’re looking for somebody who the kids trust, that will engage with them, you know, that isn’t scared. I think resilience is a big thing because there might be days when these people go in and these kids are really unhappy, because it is the risk that when you’re working with children with disabilities, that’s how they express unhappiness, it can be very physical. You need somebody who’s just going to take that on the chin and get on with it. (Professional1)
Participants also felt strongly that a good researcher is likely to be playful and to enjoy being with these CYP, even if data collection has stalled: “Get involved in the fun, and acknowledge that it’s not always going to go to plan, take a break, and then maybe just be around a bit later and when there’s the opportune time, you just pop into it” (Professional4). This approach, “a nurturing approach, you know, a playful approach … open body language, being able to build up a relationship with the child” (Professional6) was seen as being essential to doing the job well.
Limitations of the Research
Demographics of Children and Young People with Learning Disabilities.
Note. Demographic information was not provided for three participants. Children were all in Key Stage Three, which includes pupils aged 11–14 years.
Conclusion
Summary of Key Recommendations.
However, they also make clear that the way forward is complex and that the highly personalised nature of the approach we have recommended means that research with this population is likely to be more expensive than equivalent research with CYP who do not share their cognitive and communication needs. This has implications for funders, who need to be prepared to take this into account, and for researchers who need to find efficiencies that support the delivery of value for money as well as substantive value. This financial issue also has implications for training early career researchers such as postgraduate students. One way forward here would be for the community to come together to draw upon open research practices to share data collection tools and guidance openly, and to develop educational modules to develop the necessary skills. This is likely to have value to research with learning-disabled groups but also for other marginalised and seldom-heard groups who may also benefit from a toolbox or UDL-style approach to data collection. The next step is to build on our current findings by exploring them with learning-disabled CYP themselves.
Footnotes
Acknowledgements
We thank the participants in this study for supporting this work by sharing their views so openly. We would also like to thank the members of our research team: Dr Emma Jackson, Prof Vanita Sundaram and Prof Carole Torgerson for comments and constructive whole team discussions throughout the life of the project. Finally, we thank the UK Economic and Social Research Council (ESRC) for funding this project and for recognising the vital importance of taking additional steps to include seldom-heard voices in longitudinal cohort studies
Statements and Declarations
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Economic and Social Research Council (ESRC) under Grant [ES/Y000986/1].
Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
Data will be available via ReShare by the point of publication