Children with 22q face unique educational challenges and support needs due to a combination of overlapping factors. They have complex developmental challenges, including cognitive, language and motor delays (Swillen and McDonald-McGinn, 2015), and face socio-emotional difficulties (Cohen et al., 2017). These overlapping challenges highlight the importance of integrated support systems that consider not only academic progress but also emotional resilience, social inclusion and physical components of wellness. The 22q condition affects approximately 1 in 2148 individuals (Blagojevic et al., 2021) and presents with a highly variable profile, distinct facial features such as a small mouth, wide-set eyes, drooping eyelids, and a rounded nasal tip, as well as physical health complications, such as palatal abnormalities, congenital heart disease, immunodeficiency, and low muscle tone (McDonald-McGinn et al., 2015; McDonald-McGinn et al., 2022). In the UK, the socio-emotional needs of CYP with this condition are largely overlooked in the classroom due to lack of staff knowledge, or the focus of support being directed primarily on academic progress (Cohen et al., 2017). A recent study highlighted the importance of parental perspectives in shaping inclusive planning.

Communication difficulties are common among the 22q population (Solot et al., 2019). Many also have a mild- to-moderate intellectual disability (Fiksinski et al., 2022) and may attend either a mainstream or special school depending on severity. UK data is limited, but one study suggested that 76% of CYP with 22q attend mainstream schools, and overall, 74% had a statement of special educational needs (Reilly and Stedman, 2013). However, international studies suggest a trend toward special education during secondary schooling and beyond, when the curriculum demands higher cognitive skills and more abstract understanding (Mosheva et al., 2019; Cutler-Landsman, 2020). In addition, physical challenges hinder participation in activities like physical education (PE) and group sports, and CYPs often have numerous appointments with health professionals due to the range of medical issues which leads to frequent absence (Reilly and Stedman, 2013). Combined with learning challenges, this can greatly impact CYP’s educational journey (McDonald-McGinn et al., 2015) and consequently, result in feelings of inadequacy and a lack of belonging.

In addition to medical and educational challenges, CYP with 22q are at increased risk of neurodevelopmental and psychiatric conditions, including autism, attention deficit hyperactivity disorder (ADHD) and phobias (Schneider et al., 2014). Mood and anxiety disorders are particular common and linked to developmental milestones that demand greater independence and social integration. These difficulties may be exacerbated by low self-esteem and a growing awareness of their differences (Fabbro et al., 2012; Tang et al., 2015). Moreover, daily challenges with social cognition can make it difficult to form and maintain peer relationships and many CYP with 22q experience bullying or exclusion by peers which can lead to anxiety and social withdrawal (Angkustsiri et al., 2014). Combined, these cognitive, behavioral and socio-emotional difficulties significantly affect the educational experiences of CYP with 22q.

Lack of awareness of 22q among school staff often results in variation in the level of provision, poor communication between educators and families, and a failure to address individual needs (Cohen et al., 2017). A recent co-production study echoed these concerns, highlighting that schools prioritized academic performance over holistic support while CYP’s socio-emotional needs were often ignored (Jayman et al., 2025). Moreover, the authors reported several triggers for poor mental health, including bullying, peer rejection and social isolation (Jayman et al., 2025). Despite these challenges, CYP with 22q can thrive when provided with appropriate learning and socio-emotional support as shown by data from the US (Cutler-Landsman, 2020). Jayman et al.’s (2025) research identified a range of protective school factors including strong relationships with knowledgeable staff, supportive peers, and inclusive environments. Building on this evidence, further co-production research is needed to tackle the existing gaps in holistic wellbeing support in the UK education system.

The current study aligns with educational priorities that champion inclusive, health-promoting environments (GOV.UK, 2021; Schuelka, 2018) where all pupils can thrive academically, socially, and emotionally. Key to this is authentic collaboration with CYP, their families and other key stakeholders. As such, this study aimed to bridge knowledge gaps and facilitate more inclusive practice by designing an educational toolkit comprised of practical resources. Crucially, development was led by young people with 22q and their families. Their voices and experiences were prioritized throughout the research process.

The study design was participatory-action research (PAR) (James et al., 2007) (see Figure 1). PAR recognizes participants as active collaborators throughout the research journey (Kindon et al., 2009). Any health evaluation, either physical, mental, or other, should involve the individuals whose health is being addressed (Fetterman et al., 1996). Thus empowering participants to have greater control over their lives (Baum et al., 2006).

PAR aims to be democratic, reducing the top-down, expert-driven nature of traditional evaluation research (Kindon et al., 2009), and is particularly suitable for research involving marginalized groups such as CYP with 22q and the wider SEND population. PAR principles were embedded throughout the research process (see Table 1).

The coproduction team comprised: Educational professionals (questionnaire respondents); CYP with 22q and parents, Educators (focus group participants); and researchers from the University (see Table 2). Purposive sampling was used to recruit professionals and CYP with 22q and their families.

Ethical approval was provided by the University ethics board before the study commenced (PSYC 24–493). An online questionnaire was distributed to educational professionals from across the UK. Questions pertained to: Staff sources of knowledge around 22q and wider SEND; knowledge and provision of support; barriers to supporting students with 22q and wider SEND; and transition and induction. Ten educational professionals responded; three were excluded due to missing data and seven were included in the analysis.

A total of nine participant-researchers (three young people with 22q and six parents) took part in designing and developing the toolkit resources. A one-day workshop was hosted at the University and took place in a comfortable room arranged for group work. Resources including large paper, colored pens, sticky notes and Blu Tak were provided to facilitate workshop activities. The session was facilitated by author 1 and author 2. The co-production team agreed the aims of the workshop. Participant-researchers brainstormed ideas for tackling existing poor understanding and lack of support in schools for CYP with 22q. Through a collaborative, iterative process, three resource types were selected to comprise an educational toolkit for schools (primarily aimed at secondary schools, where evidence suggests CYP struggle the most): an infographic poster targeted at the whole school community; a pocket guide for support staff, and a short video aimed at peers without 22q. Three smaller groups were formed (with one young person and two parents in each), to work on developing the individual resources, with researchers facilitating but not directing discussion. At the end, each group presented their ideas, and feedback was shared across the group to inform further development. The workshop lasted approximately 4 hours with lunch and refreshment breaks added. CYP and parent dyads were paid £50 each for their time and reimbursed travel/accommodation expenses. Following the workshop, the designs for the resources were refined in collaboration with participant-researchers via online communications until final approval was agreed.

Three educators from across the UK took part in an online focus group to provide preliminary feedback. Qualitative data on the toolkit’s practical application in schools were gathered. Each educator was provided with a £50 book voucher for their school. Feedback was used to refine the toolkit and revised versions were shared with all stakeholders for final sign-off. A set of sample resources was produced by external professional services.

The researchers acknowledged traditional power imbalances in research and actively stepped back from leading, instead prioritizing the voices of CYP with 22q and their families throughout. Participants were treated as co-researchers, and member checking was regularly used to ensure authentic representation of their views.

Questionnaire data were integrated with evidence from the wider literature and prior research findings. Deductive thematic analysis was conducted to identify key gaps in understanding and support needs for CYP with 22q which informed the development of an educational toolkit. Focus group data from educators was thematically analyzed to establish preliminary evidence of feasibility and inform ongoing development.

Integrated findings from the extant literature, prior co-production research with the 22q population (Jayman et al., 2025) and questionnaire data collected from educational professionals, identified specific gaps in understanding and support for pupils with 22q as well as factors promoting good practice and inclusion. Two thematic categories and nine subthemes were elicited (see Table 3).

Findings revealed that the majority of staff in schools (85%) had little awareness of 22q, and limited knowledge had been acquired informally, via parents, staff’s own research or the MaxAppeal (22q) charity. Little formal training around 22q was identified and support staff lacked confidence in their ability to provide tailored support. Families reported feeling dismissed or misunderstood by professionals and often felt excluded from planning the support for their CYP which contributed to knowledge gaps. Education, Health and Care Plans (EHCPs) were largely completed without parental or CYP input and with targets often vague, poorly set, and consequently unachievable.

School transitions were periods when CYP and families felt more support was needed as school-related stressors were intensified. The transition from primary to secondary school was a pivotal ‘pinch point’, that is, a critical stage in a pupil’s educational journey when challenges and support needs are heightened. For young people with 22q11.2DS, such transitions often bring increased stress and risk of unmet needs, highlighting the importance of targeted support at these times. Transition planning was often inconsistent and lacked follow-up across settings. While some tailored support was reported, a fragmented picture was revealed with insufficient support in place, particularly around socioemotional needs.

Multiple gaps were identified in timely and appropriate support for CYP’s unique learning needs. For example, with regard to speech, language and communication, support was often variable, and a lack of joined up working between schools and speech and language services was a common challenge. While ‘communication passports’ designed to share information between professionals were underutilized.

Similarly, gaps in mental wellbeing support were revealed with CYP’s needs often being overlooked or misinterpreted as behavioral issues. Several school-related factors associated with diminished wellbeing such as peer rejection, disrupted routines and lack of belonging were commonly reported. Due to the lack of formal or accessible support pathways (e.g., targeted socio-emotional interventions), some CYP used avoidance coping strategies. As Kate reflected, “I think I mostly just blocked out my time at secondary school from my mind.” Whereas Emma took a more direct approach: “Her way of dealing with it is to get out of the situation, so she’ll tell the teachers that she’s not feeling…her aim from that is that somebody will come and pick her up and take her home” (parent of Emma). Conversely, protective factors included positive relationships with trusted adults, peer support and structured routines. Kate’s parent described the primacy of her daughter’s relationship with one of her teacher’s: “Her German teacher was so good with her and so nurturing, he worked with her one-to-one.” While Callum extolled the benefits of having someone to call a friend, “Abel [my friend] looked after me and helped me.”

Despite the substantial barriers that CYP encountered, some pockets of good practice were flagged which relate not only to CYP with 22q but the broader SEND population. School staff were generally committed to supporting all CYP under their care given appropriate training and support themselves. Factors promoting better provision and an improved school experience for pupils with SEND included good relationships between staff and parents with strong parental involvement, robust and consistent procedures, tailored resources, and collaboration among all key stakeholders including CYP. Pertinently, however, these exemplars overwhelmingly emanated from specialist providers, exposing a disproportionate gap in support and good practice found in mainstream settings.

Collectively, these findings indicated a widespread lack of whole school awareness of 22q and accessible resources to support pupils in mainstream schooling. To address these gaps, the co-production team agreed an action plan which constituted the next stage of the PAR cycle.

YP and their parents designed a toolkit primarily targeted at secondary schools. This comprised three unique resources: 1. An infographic poster, targeted at the whole school community for display in public areas to raise general awareness of the condition. 2. A pocket guide aimed at individuals working on a 1–1 basis with CYP, and who may have little or no specialist training or prior experience. 3. A short, animated video aimed at peers without 22q. See Figure 2 documenting the design and development process for the infographic poster.

Following the workshop, the authors worked closely with YP and their families over several weeks to refine and finalize the first iterations of the three resources for stage 3 of the PAR cycle.

Overall, feedback from the three educators who participated in the focus group was highly positive. All three resources were perceived as useful and feasible for implementation in mainstream school settings. The video was still under development at the time of writing and evaluation not included here Key findings are organized under thematic categories: Practicality and alignment with existing practice; Value to multiple stakeholder groups; and Ongoing development and enhancement.