Background

Healthcare professionals’ knowledge, attitudes and behaviour have been recognised as significant factors in the health inequalities experienced by people with learning disabilities and/or autistic people in healthcare services (Nancarrow et al 2019, Corden et al 2022). Learning disabilities and autism are characterised by differences in sensory, visual-spatial and language processing and executive functioning (planning, organising and decision-making). As a result, people with learning disabilities and/or autistic people may have differences in treatment needs compared with the general population, such as longer appointment times, alternative communication methods and increased crisis planning. A lack of understanding and awareness of the core aspects of learning disabilities and autism, alongside the differences in treatment needs for these populations, have led to avoidable deaths, under-identification and suboptimal treatment outcomes – as highlighted by the Learning from Lives and Deaths report (White et al 2023).

In academic discourse, there is a growing call for neurodiversity-affirming healthcare practices, with Dallman et al (2022) suggesting that there is a ‘moral imperative’ for healthcare staff to embrace neurodiversity-affirming care. To provide neurodiversity-affirming care, healthcare professionals need to respect patients’ individual neurotypes and processing abilities that influence the way they sense and operate in their environment. This approach to care provides neurodivergent people with the social agency to engage in activities in a way that best suits them, while recognising the differences in social rules, norms and communication styles of these individuals rather than regarding these as ‘behaviours’ that need to be altered or ‘fixed’ (Dallman et al 2022, Dwyer et al 2023).

The use of neurodiversity-affirming practices when supporting people with learning disabilities and autistic people in healthcare services can be beneficial in safeguarding their autonomy and respect (O’Dell et al 2016, Anderson-Chavarria 2020, Dwyer 2022). However, it should be acknowledged that not all people with learning disabilities consider themselves to be neurodivergent.

There is provision under the Equality Act 2010 for ‘reasonable adjustments’ to be made for people with disabilities, which includes people with learning disabilities and/or autistic people. However, it is often incumbent upon healthcare professionals to identify the individual as having a learning disability or being autistic and to understand their responsibilities under the Act. Clinical frameworks such as the 4C Framework (communication, choice-making, collaboration and coordination) (Marsden 2023) offer some guidance to healthcare professionals; however, education and training are essential to reinforce practice developments.

The UK and devolved governments are at different stages of mandating learning disability and autism training for all healthcare professionals (Improvement Cymru 2021, Health and Care Act 2022, Scottish Government 2023). In England, Care Quality Commission (2023) statutory guidance requires health and social care providers to provide training for their staff in learning disability and autism at a level appropriate to their role, aligned with the Health and Care Act 2022. Given this requirement, it is essential that healthcare organisations implement effective training based on the core capabilities frameworks for supporting people with learning disabilities and autistic people in England (Health Education England 2019a, 2019b) and the Learning Disability Educational Framework for Healthcare Staff in Wales (Improvement Cymru 2021). The preferred and recommended training for this purpose in England is the Oliver McGowan Mandatory Training on Learning Disability and Autism, which was launched in England in 2022 (NHS England 2024).

This article details a scoping review of the literature that was undertaken to explore this area further. The first author (IB) chose to explore this topic because they are a neurodivergent mental health nurse.

Aim

This article aims to examine the research on learning disability and autism education and training for healthcare professionals and how this may affect their perspectives and practice.

Method

This scoping review was undertaken in July 2023. Five databases were searched – Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, British Nursing Index, Google Scholar and ScienceDirect. The search terms are shown in Box 1. The Boolean operator ‘OR’ was used in the search, but ‘AND’ was not used because evidence suggests it can affect the validity of the results (Wilczynski et al 2007). Developing a search strategy that was tailored to the ‘health problem/life process response diagnoses of nursing’ was useful (Lavin et al 2005, 2008). However, it was recognised that valuable research could be found across various disciplines, including medicine, allied health professions and nursing, so the approach was tailored to capture the diverse data in this subject area (Snyder 2019).

The search initially found more than 4,000 articles, so inclusion and exclusion criteria (Table 1) were applied. Following application of these criteria, 201 articles remained which were screened for eligibility. The data were synthesised, informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist (Tricco et al 2018). Using this checklist, articles that were deemed biased or contained unreliable data were excluded. As a result, 11 articles met the final eligibility criteria and were included in the review. These articles were analysed using thematic analysis to identify the main themes (Clarke and Braun 2013).

Findings

Of the 11 articles included in the review: six evaluated the efficacy of training programmes; one explored the research and training priorities of staff who support people with learning disabilities; two explored staff perspectives and/or attitudes, knowledge and/or self-efficacy and behaviour in relation to learning disabilities and autism; one aimed to identify necessary components of ‘autism-friendly healthcare’; and one evaluated the effect of implementing a new protocol that increased autism screening and diagnosis by healthcare professionals. Table 2 shows a summary of the articles included in the scoping review and is available online at: rcni.com/health-inequality

Six main themes were identified from the thematic analysis:

Discussion

This scoping review found that learning disability and autism education and training is often beneficial for healthcare professionals, particularly in terms of increasing their knowledge and screening. However, there was insufficient identification of the specific changes to healthcare professionals’ behaviour and practice following training; as Clarke and Fung (2022) noted in their systematic review, increased screening for autism and learning disabilities was the only change to behaviour recognised and evaluated in the literature.

This review identified that training delivered by experts by experience who are autistic and/or have learning disabilities resulted in significantly better outcomes compared with training that did not involve experts by experience (Clark et al 2016, Nancarrow et al 2019, Treise et al 2021, Kyle and Connolly 2022, Rudra et al 2022). However, it is beyond the scope of the review to analyse the cost-effectiveness and ethical considerations for implementing such training.

The literature reviewed was limited in exploring patients’ perspectives of whether training enhanced their experiences of care and treatment outcomes. This could be attributed to challenges in patients safely participating in research during the coronavirus disease 2019 (COVID-19) pandemic; however, this is not only a contemporary issue. For example, Pellicano et al’s (2014) large-scale questionnaire study highlighted that while researchers perceive themselves to be engaged with the autistic community, autistic community members (autistic people and their families) often do not share that view.

In the authors’ experience, learning disability education and training is often provided in conjunction with autism education and training. However, doing so may have limitations and potential adverse effects on healthcare professionals’ understanding of these subjects. Therefore, it is essential to clarify the similarities and differences between them and it is recommended that additional stand-alone education on each subject is provided.

While there is ongoing debate about learning disabilities nurses’ future practice contribution to the healthcare of autistic people (Beebee 2024), these nurses have a valuable role in facilitating high-quality learning disability and autism education and training for healthcare professionals in collaboration with experts by experience. To maximise the potential benefits of such training, it is important that healthcare organisations provide support to retain staff and ensure adequate staffing in the learning disability nursing sector.

Another finding of this review was that most of the literature focused on the effects of learning disability and autism training on medical staff or allied health professionals rather than nurses. Therefore, the authors recommend that further research is undertaken to explore the effects of such training on nurses’ practice – particularly mental health and learning disability nurses – when supporting people with learning disabilities and/or autistic people.

Conclusion

The findings of this scoping review suggest there is a need for training to be developed, delivered and evaluated to improve outcomes for people with learning disabilities and autistic people. The literature suggests such training is often beneficial, particularly in increasing healthcare professionals’ knowledge and screening, with the greatest improvements resulting from simulation-based or co-produced training that involves experts by experience. The review also highlights the need for further research to evaluate the longitudinal effects of training, particularly on healthcare professionals’ behaviours in practice, and ultimately to review the effect of mandatory training on the health inequalities experienced by people with learning disabilities and autistic people.