Abstract
Introduction: Pupils with SEND represent a significant proportion of the school community, comprising on average four children in every classroom. Yet, evidence suggests a wide variation in provision and common instances of pupils’ learning and mental wellbeing needs being missed or not identified accurately. Sustaining pupils with SEND within mainstream education presents a huge challenge (Department for Education, 2018). Primary school staff have reported that the strain on specialist services nationally – exacerbated by the COVID-19 pandemic – is making it even more difficult to support pupils with SEND (GOV.UK., 2022). This is likely to lead to more alternative provision (AP) referrals and permanent school exclusions. Pertinently, most primary-age pupils referred to AP have socio-emotional and mental health needs. Despite legislation enacted to increase families decision-making rights over education provision, such empowerment appears not to have been translated into practice. Furthermore, children and young people (CYP) have a right to express their views on matters affecting their lives, however, evidence suggests that their voices often go unheard, and this is even more apparent for CYP with SEND. Nonetheless, research shows that pupils with SEND can actively contribute to positive change and more inclusive practice (Dimitrellou & Male, 2019). The current study focused on a specific population of SEND pupils: CYP with 22q.11 deletion syndrome (22q). This condition is associated with developmental delay and mild-to-moderate intellectual disability (Fiksinski et al., 2022), while CYP experience co-occurring physical and neurodevelopmental conditions and are at substantial risk of poor mental health.
Aims: This exploratory qualitative study investigated key stakeholder perceptions and experiences of existing mental wellbeing provision. The aim was to identify barriers and facilitators for tailored support in the 22q population to inform guidance for schools and generate hypotheses for further research.
Methods: To the best of our knowledge, prior to this study children in England with 22q had not participated in research about their lived experiences and support for their mental wellbeing. To facilitate co-production with CYP and their parents, a Participatory Action Research (PAR) method was utilised which recognises CYP as experts in their own lives. Participants were purposively sampled and comprised n=10 CYP with 22q and n=14 parents. Steering groups were hosted to shape the development of the interview schedules and to meaningfully involve CYP with 22q from the outset. For example, participants helped to inform appropriate language, vignettes, and visual prompts to accommodate a range of developmental stages and capacities. In line with a PAR ethos, CYP’s voice was prioritised throughout the research process. Techniques such as member checking helped to ensure that participants’ authentic voice was captured. Data collected from semi-structured interviews were thematically analysed using a hybrid deductive-inductive approach.
Results: Seven thematic categories were elicited: Mind the gaps: Support for CYP with 22q - pupils' support in mainstream schools centred on learning targets, ‘academic blinkeredness’ meant CYP’s socio-emotional needs were often overlooked; My mental health and wellbeing story - many participants associated secondary school with poor wellbeing and mental health difficulties, often linked to increasing academic demands, bullying or unmet support needs; Power and influence: the dynamics of relationships - most CYP were able to identify a trusted adult in school they could talk to about their feelings, although teaching and pastoral staff were not always perceived as approachable and sometimes feared; Getting it wrong: Failing CYP and families – systemic failures in health and education were highlighted including poor communication and funding-driven (not CYP-centred) decision making; Getting it right: From surviving to thriving – examples of good practice and suggestions for more inclusive approaches were voiced including actions for raising awareness about 22q; Managing Transition – transitions emerged as pivotal points for wellbeing and facilitators and barriers to a smooth experience were elicited; Nothing about me, without me, is for me – CYP and their parents’ experiences of feeling voiceless were expressed alongside a commitment to be heard as ‘experts’ in their own lives, including CYP’s active involvement in developing resources for schools.
Conclusion: Research suggests that pupils with SEND were disproportionately impacted by the pandemic and tackling this requires a more holistic understanding of pupils’ individual needs. The UK government improvement plan has pledged to enhance the early identification of needs and intervention for pupils with SEND and stipulates that the SEND system should be co-produced with families, children and young people (HM Government, 2023). The current research supports this commitment and provides authentic insights into the lived experiences of CYP with 22q that can be used to inform guidance for schools and more inclusive practice. Findings can be extrapolated to the wider SEND population.
Aims: This exploratory qualitative study investigated key stakeholder perceptions and experiences of existing mental wellbeing provision. The aim was to identify barriers and facilitators for tailored support in the 22q population to inform guidance for schools and generate hypotheses for further research.
Methods: To the best of our knowledge, prior to this study children in England with 22q had not participated in research about their lived experiences and support for their mental wellbeing. To facilitate co-production with CYP and their parents, a Participatory Action Research (PAR) method was utilised which recognises CYP as experts in their own lives. Participants were purposively sampled and comprised n=10 CYP with 22q and n=14 parents. Steering groups were hosted to shape the development of the interview schedules and to meaningfully involve CYP with 22q from the outset. For example, participants helped to inform appropriate language, vignettes, and visual prompts to accommodate a range of developmental stages and capacities. In line with a PAR ethos, CYP’s voice was prioritised throughout the research process. Techniques such as member checking helped to ensure that participants’ authentic voice was captured. Data collected from semi-structured interviews were thematically analysed using a hybrid deductive-inductive approach.
Results: Seven thematic categories were elicited: Mind the gaps: Support for CYP with 22q - pupils' support in mainstream schools centred on learning targets, ‘academic blinkeredness’ meant CYP’s socio-emotional needs were often overlooked; My mental health and wellbeing story - many participants associated secondary school with poor wellbeing and mental health difficulties, often linked to increasing academic demands, bullying or unmet support needs; Power and influence: the dynamics of relationships - most CYP were able to identify a trusted adult in school they could talk to about their feelings, although teaching and pastoral staff were not always perceived as approachable and sometimes feared; Getting it wrong: Failing CYP and families – systemic failures in health and education were highlighted including poor communication and funding-driven (not CYP-centred) decision making; Getting it right: From surviving to thriving – examples of good practice and suggestions for more inclusive approaches were voiced including actions for raising awareness about 22q; Managing Transition – transitions emerged as pivotal points for wellbeing and facilitators and barriers to a smooth experience were elicited; Nothing about me, without me, is for me – CYP and their parents’ experiences of feeling voiceless were expressed alongside a commitment to be heard as ‘experts’ in their own lives, including CYP’s active involvement in developing resources for schools.
Conclusion: Research suggests that pupils with SEND were disproportionately impacted by the pandemic and tackling this requires a more holistic understanding of pupils’ individual needs. The UK government improvement plan has pledged to enhance the early identification of needs and intervention for pupils with SEND and stipulates that the SEND system should be co-produced with families, children and young people (HM Government, 2023). The current research supports this commitment and provides authentic insights into the lived experiences of CYP with 22q that can be used to inform guidance for schools and more inclusive practice. Findings can be extrapolated to the wider SEND population.
| Original language | English |
|---|---|
| Publication status | Published - 11 Sept 2024 |
| Event | BERA Conference and WERA Focal Meeting - University of Manchester, Manchester, United Kingdom Duration: 8 Sept 2024 → 12 Sept 2024 https://www.bera.ac.uk/conference/bera-conference-2024-and-wera-focal-meeting |
Conference
| Conference | BERA Conference and WERA Focal Meeting |
|---|---|
| Country/Territory | United Kingdom |
| City | Manchester |
| Period | 8/09/24 → 12/09/24 |
| Internet address |
Keywords
- Mental health and wellbeing
- 22q11 Deletion Syndrome
- Participatory Action Research
- schools
- Inclusion/inclusive education