Autistic children and adults who attend at an acute hospital rely on health professionals and other staff such as receptionists to interact with them appropriately to facilitate an accurate diagnosis and manage their health concerns. If staff do not have these skills, this can result in suboptimal care (Shafiqa et al, 2016). Mason et al (2019) stated that the health outcomes for autistic people are adversely affected by comorbidities as well as difficulties in accessing and navigating acute healthcare environments. These factors demonstrate a need to develop targeted education for healthcare staff working in the acute hospital setting.
This article focuses on the development and evaluation of an e-learning education programme for staff working in an acute hospital setting to increase and enhance access to health care for autistic adults and children. Kern et al's (1998) six-step approach to curriculum development was applied to the project. This method of developing a curriculum is explained and the results of the process will be discussed in the context of improving care provision and accessibility for autistic patients within the acute setting.
Background
First described in the 1940s, autism spectrum disorder (ASD) is a lifelong heterogeneous neurodevelopmental condition characterised by qualitative challenges with social communication, interaction and imagination, as well as restricted, repetitive patterns of behaviour, interest or activities (American Psychiatric Association, 2013). Intellectual disability can occur with ASD. However, for higher functioning individuals, executive functioning and social-cognitive differences account for challenges linked to social interaction and understanding non-literal expressions such as metaphors (Abbott et al, 2018; Russ et al, 2018). Livingston and Happé (2017) stated that adults with ASD but without intellectual impairment may experience fewer overt difficulties with social communication due to learnt compensation strategies, which mask their traits and challenges. Sensitivity to a range of sensory stimuli is also included as part of the Diagnostic and Statistical Manual diagnostic criteria for ASD (American Psychiatric Association, 2013). These include hyper-reactivity or hypo-reactivity to auditory, visual and olfactory stimuli, which can be a barrier to accessing health care or to engaging fully with the consultation (Simpson, 2020).
Significant progress has been made over the past two decades in the development of screening and diagnostic instruments for ASD. In Ireland, 1.5% of the school-age population is affected (Department of Health, 2018). Best practice guidelines for the assessment and diagnosis of ASD involve a multidisciplinary approach that includes a detailed developmental history, usually provided by parents or primary caregivers. The process of assessment should identify an individual's profile of strengths and support needs using validated tools across key developmental areas (National Institute for Health and Care Excellence (NICE), 2021a).
With increased diagnosis within children's services, a substantial number of people with ASD are moving into adulthood and using adult services. Access to health care is important. Therefore, reviewing the enablers and barriers to health care for children and adults with ASD is important to facilitate access to appropriate healthcare interventions.
Despite the progress in diagnosing children, it is likely that there is a significant number of undiagnosed adults living in the community (Baron-Cohen et al, 2009). This might be because, first, autism is a relatively recent diagnosis, and did not appear in the World Health Organization (WHO) International Classification System until 1992 (WHO, 2022). Second, there are fewer standardised and validated autism assessment tools for adults. Autism among adults can be missed, particularly in those presenting with comorbidities such as anxiety and depression (Bilder et al, 2013; Alabaf et al, 2019), and some repetitive patterns of behaviours may become internalised and difficult to identify. Furthermore, clinical diagnosis typically includes a developmental history, which may be problematic due to the absence of collateral history; in addition, many adults with undiagnosed autism may have impaired insight into their disabilities, thereby making access to services, including diagnosis, problematic.
People diagnosed with ASD are referred to in the literature by various terms, such as ASD, autistic, having an autistic spectrum condition (ASC), and ‘being on the autistic spectrum’. Kenny et al (2016) reported that the terms preferred by autistic people are not always the same as those favoured by health professionals. This issue was relevant to the design of the education programme described in this article.
Access to acute health services
There is a growing body of research in relation to the elevated rate of physical health conditions among the autistic population compared to the general population (Gillberg et al, 2000). Jolly (2015) reported that children with ASD are more likely to access acute hospital services than those who do not. This is predominantly due to the existence of comorbidities such as epilepsy, allergies, gastrointestinal disorders, sleep disorders, mental health needs and conditions such as Down syndrome and fragile-X syndrome (Alabaf et al, 2019). Mason et al (2019) suggested that autistic people, when compared with the general population, are more likely to be diagnosed with epilepsy and cardiovascular diseases. Hirvikoski et al (2016) reported that autistic adults experience elevated mortality by as much as 18 years.
According to Zerbo et al (2019), autistic individuals are 2.1 times more likely attend an outpatient clinic compared with age-matched cohorts. However, there is a significant number of unmet needs and autistic people report significant barriers and disparity in access to appropriate health care (Calleja et al, 2019). Challenges to healthcare access include social communication skills, sensory processing and transition difficulties. Other factors include whether or not they have a diagnosis of ASD, the age at which they were diagnosed, family support, and level of education and training. If their needs are not understood, autistic people can also display behaviours of concern, such as aggression and self-injurious actions, which can serve as barriers to effective healthcare delivery. The healthcare environment can also contribute to discomfort. Kitson-Reynolds et al (2015) discussed how the hospital environment is a familiar one for healthcare staff but, for autistic people, the sounds, smells, lights and necessity to communicate with strangers can cause them extreme distress. Strategies centred on effective communication and providing an appropriate environment can optimise the outcomes.
Furthermore, arising from the heterogeneity of ASD, health professionals may not recognise the needs of such patients and inadvertently provide ineffective care. In addition, many health professionals who have some knowledge of autism do not always have sufficient skills to apply this appropriately or recognise when these skills are required for the benefit of this patient cohort. Consequently, autistic people report lower satisfaction with healthcare interactions due to communication challenges with health professionals (Zerbo et al, 2015).
Therefore, it is important that all staff, particularly health professionals in an acute care setting, have access to the necessary information to care for this patient group safely and effectively. The Autism Act 2009 and NICE National Clinical Guidelines – CG142 (NICE, 2021a) and CG170 (NICE, 2021b) – make specific recommendations for education that should be received by health and social care professionals in any setting where they will be working with children or adults with ASD. In the Irish context, the Health Service Executive (HSE) has published a report entitled Review of the Irish Health Services for Individuals with Autism Spectrum Disorders (HSE, 2018). Services for autistic people were reviewed and examples of good practice that can be replicated more widely in the health service were identified. A priority identified was the provision of training for clinicians to improve their competency in working with autistic people using health services in Ireland.
In view of this background information, it was decided to develop an education programme for health professionals working in adult and children's acute settings.
Method
It was important to design a curriculum that addressed the learning needs of participants, while making the experience meaningful and accessible to as wide a group as possible. According to Prideaux (2003), a curriculum hinges on a set of beliefs about what the participants of a programme should know and how they learn it. He highlighted that a curriculum should be based on current best evidence and evolve over time. Kern et al (1998) described a curriculum as a planned educational experience. They developed a six-step approach to curriculum development, which was applied to this project. Myers and Schenkman (2017) noted that the six steps are cyclical and often overlap with each other as a project progresses (Box 1).
Box 1.The Kern six-step approach to developing a curriculum
Source: Kern et al, 1998; Myers and Schenkman, 2017
| 1. General needs assessment |
| 2. Targeted needs assessment |
| 3. Goals and objectives |
| 4. Educational strategies |
| 5. Implementation |
| 6. Evaluation |
Source: Kern et al, 1998; Myers and Schenkman, 2017
General needs assessment
The project lead was a nurse tutor with experience of working with both children and adults in the acute hospital sector. The project site housed acute services for children and adults and had a centre for learning and development (CLD), where continuing professional development and mandatory training activities took place. Staff in the CLD prioritised mandatory and established education programmes based on service needs. Innovation and creativity were also encouraged and staff regularly evaluated their programmes to ensure that they were fit for purpose.
Following a literature review, and after identifying some of the gaps in knowledge and the impact that these gaps had on the accessibility of services for autistic patients, it was decided to seek subject experts and source funding for a possible new education programme. At this juncture, the first overlap of the six-step cycle occurred. There were no available resources within the existing budget for a new programme. In order to complete an application for innovation funding, the project lead needed to commence steps 2, 3 4 and 5 in order to clearly articulate what was required and to get the project started.
Targeted needs assessment
Following the general needs assessment, a targeted needs assessment will focus on what the learners need to know, as well as the environment within which the material will be taught. The decision was made to develop an e-learning programme to be hosted on the Irish HSE's online education portal, called HSeLanD (www.hseland.ie). This is an Irish repository of online education and most staff working for the HSE and affiliated services are accustomed to accessing it for education purposes. E-learning was selected to broaden the reach of the programme and to enable staff to access it at their convenience. It is an approach that was used with good effect by Jang et al (2012) when they trained parents and caregivers on the principles and procedures of applied behaviour analysis. From a practical perspective, e-learning was also suitable for this project as the project lead was allowed time to develop the resource, but committing time to repeated classroom education sessions was not possible.
A group of subject experts was approached and agreed to assist with further developing content and to participate in recorded interviews for the e-learning programme. The subject experts included the chief executive officer (CEO) and team members from AsIAm, an Irish autism advocacy group, a senior clinical neuropsychologist, a consultant paediatrician in complex needs and neurodisability, a professor of child and adolescent psychiatry and a clinical nurse specialist in neurodisability. An educational technologist joined the nurse tutor in planning for the structure of the programme.
A survey was developed to find out what staff considered a priority for their learning, based on the suggested content from the experts. However, this aspect of stage 2 was deferred, as funding still needed to be obtained which necessitated some work on stages 3 and 4 of the Kern approach (1998).
Goals and objectives
The subject-matter experts contributed their recommendations for the content of the education programme. From these, some broad learning outcomes were developed. It was intended that, at the end of the e-learning programme, participants would:
- Demonstrate increased awareness and knowledge of what autism is and how it may present
- Identify communication strategies to optimise the healthcare consultation for autistic people
- Identify ideas and approaches that may be helpful for adapting the hospital environment to better suit the needs of those with autism
- Describe strategies for pre-empting, understanding, and responding appropriately to behaviours of concern in the hospital setting.
The educational technologist advised on the process and costs involved for a production company to record and edit interviews with the subject experts. Funding was obtained from a nursing and midwifery service improvement innovation funding source, which covered the costs of developing the programme and hosting it on the HSeLanD portal.
Targeted needs assessment continued
In order to provide the production company with a comprehensive brief, planning meetings took place on how to best present the material. Concurrent with these meetings, the targeted needs assessment from step 2 progressed.
To extract the most relevant and beneficial information from the subject experts, a survey was developed by members of the expert group and sent to all staff working in child and adult services in the project site. The survey content was informed by a combination of the findings of the literature review and priorities identified by the expert group. It sought to elicit staff attitudes, knowledge, and confidence in working with and responding to the needs of autistic people presenting to the hospital.
The response numbers were limited but generated some useful data for developing the learning outcomes of the programme. Of the 141 staff who responded, almost 80% had undertaken no formal education on autism. Although autism features in the curriculum for most health professionals, the amount of time given to the topic can vary. For example, in the nursing curriculum, nurses who specialise in intellectual disability receive more time on strategies for individuals with communication challenges associated with an intellectual disability than a nurse specialising in general (adult) nursing (Nursing and Midwifery Board of Ireland, 2016). Ancillary staff may have no knowledge of autism at all apart from experiences that occur in their personal lives. Such staff working in public-facing reception positions might be the first person the autistic patient meets when they attend for a consultation.
Almost 90% of respondents thought that it was important or highly important to understand the characteristics of autism and 94% wanted to know about issues to consider when an autistic person accesses the healthcare system. Despite the dearth of prior knowledge on the topic, the majority of staff who completed the survey demonstrated interest in learning more about it.
Educational strategies and implementation
It was decided that the programme would comprise a series of interview clips of the subject experts answering questions and discussing the topics associated with the learning outcomes, interspersed with clips of a nurse interacting with an autistic child and her sister. The children in question were daughters of a member of the project team. A consent form was completed to facilitate the filming. The children's outpatient department had a sensory room, so this was used for some scenes. Once filming started, it became apparent that the experts had a wealth of knowledge. Questions were scripted to ensure that the learning outcomes were addressed. The interviewees were given a copy of the questions in advance, so that they could prepare their answers. The nurse tutor sat in for all filming with the production team and was involved in the editing process, as a wealth of information had to be condensed into more manageable segments.
A resource section with additional reading materials and downloadable resources is featured in the e-learning programme. At intermittent sections throughout the programme, participants are asked a series of quiz questions to engage them, and to check knowledge and understanding of the material presented. Participants are encouraged to use a checklist, developed by AsIAm, to evaluate the accessibility of their own workplace. Following successful completion of the programme, participants receive an automated certificate of completion. The programme takes approximately 40 minutes to complete. Participants may complete the programme in stages, if required. The HSeLanD system saves progress on e-learning programmes so that, if a participant logs off and wishes to re-join a programme they were working on, they are given the choice to resume where they left off or return to the beginning.
Results
The programme was launched in December 2019 and was publicised throughout the hospital and the wider region. It was hosted on an online portal accessed by health professionals all over Ireland and was available to anyone who had an interest in completing it. Since the launch, it has also been hosted on a learning management system owned by the Irish autism advocacy group AsIAm.
Evaluation
The final step in Kern's (1998) process is evaluation of the curriculum. This step signifies the completion of the curriculum development and facilitates the start of a new cycle of developing the existing curriculum.
The programme was shortlisted for the 2020 HSE Health Service Excellence Awards and won the Excellence in Education and Training category in the 2020 HR Leadership and Management Awards. Both accomplishments provided further publicity for the programme in Irish health and social care settings.
By November 2020, 104 staff in the host Dublin academic teaching hospital had completed the programme. The original survey was modified to be sent to all staff again. The questions still sought to elicit staff attitudes, knowledge and confidence in working with, and responding to, the needs of autistic people presenting to the hospital. Additional questions asked staff whether they had completed the e-learning programme, whether they had previously completed the survey and whether their knowledge and confidence had improved as a result of undertaking the programme.
Thirty-three people participated in the follow-up survey. Over half of the respondents worked in adult services. The remainder worked either in children's services or services that served both populations. Eleven additional people commented on the online portal where the e-learning programme was hosted. Therefore, the total number of evaluations received was 44. It is not possible to make any generalised comments with such a small number. However, some interesting issues have arisen from reviewing the survey results and online comments.
Discussion
Staff were asked whether they would always know in advance if a person attending their service had autism. Almost 60% of the respondents indicated that they would not know in advance. Some of the challenges experienced by undiagnosed adults were discussed in the e-learning programme and it is hoped that this material might assist staff in recognising this issue and communicating appropriately with all patients, regardless of a known diagnosis of ASD.
One of the reviewers of the programme on the HSeLanD online portal highlighted the complexities of terminology choices. The autism advocacy group, AsIAm, recommends the use of the term ‘autistic person’ and suggests that many autistic adults like to use this term to describe themselves. Many health professionals have been educated to use ‘person first’ language such as ‘a person with autism’ (Crocker and Smith, 2019). The difference in language was apparent in the interviews within the e-learning programme. It was also apparent in the learning outcomes and the voice-overs which had originally contained ‘person first’ examples. A consultation had taken place among the key stakeholders when reviewing the content. It was agreed by the advocacy group that all the terms used were recognised terms, intended to be respectful and were taken in that spirit, to reflect the diversity of opinions on this topic. Reference to the subjectivity of language was made in the interview with the CEO of the advocacy group, along with a clear recommendation for the use of the term ‘autistic person’. It was also recommended that staff should ask autistic people accessing healthcare what their preference was. For future updates of the programme, this will be an important consideration, particularly as language changes and evolves. It is important that education programmes are representative of best practice. The term autistic spectrum conditions (ASC) changes the emphasis from ‘disorder’ (de Vries et al, 2020). It will be interesting to see if the use of this term becomes more prevalent in the future.
It is possible that the COVID-19 pandemic had some impact on the low response rate to the follow-up survey due to staff sickness and redeployment. In light of changes to education practices as a result of COVID-19, the use of e-learning programmes to disseminate knowledge and information can be useful and timely. However, in the past 18 months, there has been an increase in the amount of online educational opportunities. It can be challenging to ensure that the target audience can access the education that they require and have the time and motivation to complete it. Cook et al (2010) outlined that interactivity and repetition were two variables associated with improved learning outcomes for online-based learning. This e-learning programme provided both of these variables. Further work would be required to identify if there was a change in practice positively associated with the programme. In addition, education uptake can be low when a topic is not perceived to be relevant to the target audience. It is possible that staff are not aware of the challenges in accessing healthcare that autistic patients can experience, and this is a barrier to them undertaking the education programme.
Davis and Davis (2010) highlighted that personal experiences are motivating for health professionals in terms of changing clinical practice. Since the programme was launched, the project team has received communications from health professionals discussing personal experiences of autistic family members, sharing stories of their own diagnosis in adulthood or citing incidences in the clinical area where a learning need was identified. The combination of a well-designed programme and self-perceived need for change may prove to be a powerful motivation for health professionals to complete the programme and instigate practice adjustments based on the recommendations.
In parallel with staff training and awareness, the environment can also be adapted to maximise the ability to access appropriate healthcare services and to provide a safe and secure work environment for autistic staff members. The hospital discussed in this article is currently undergoing expansion, particularly in the outpatients department. Staff at AsIAm work with organisations to enable them to obtain ‘autism-friendly’ status, based on an environmental checklist that they have developed. As previously mentioned, this checklist is available on the e-learning programme, and Simpson (2020) described a similar checklist for use in the UK context. An environmental audit is planned in the newly designed outpatients department and the emergency department as first steps to embed accessibility. As this process begins, it is hoped that the education staff have received will lead to an understanding of the need for these changes and increased understanding of the important issues surrounding accessibility to services for all patients in the acute hospital setting.
Another project that was launched at the same time as the e-learning programme was an art exhibition on a long thoroughfare within the hospital known as ‘Hospital Street’. This exhibition was curated by the arts department in the hospital. It consisted of original paintings, poems and photographs by a collective of autistic artists. The arts department regularly shows themed exhibitions in the Hospital Street space. Through collaboration with AsIAm, it was possible to make contact with the artists' collective and launch two autism-focused initiatives at the same time in order to generate reciprocal publicity. The exhibition remained in place for 5 months and was very well received by staff and the public.
Conclusion
This article has outlined the process whereby an e-learning programme was developed to educate staff working in the acute hospital setting about autism. The goals for the education programme were to increase staff knowledge about autism, suggest how to adapt their communication style for efficacy, and discuss how to make the environment more accessible for autistic patients.
The Kern six-step approach (1998) to developing a curriculum was used to structure the project. Two staff surveys were developed, the first to assist in a targeted needs assessment and the second to contribute to the evaluation of the curriculum development. Staff identified a desire to learn more about autism and how to make patient consultations and experiences more accessible and productive. It was acknowledged that there are many undiagnosed autistic adults navigating the acute health system and it is anticipated that the e-learning programme will assist staff in identifying and meeting their needs. Experts spoke about these issues within the education programme. The resulting programme is available on www.hseland.ie for staff working in the Irish health and social care system.
The programme will be available for the next 3 years, which will enable health and social care staff to access it at a time that is suitable for their needs. The programme content will then be reviewed. As important as it is to develop evidence-based, quality e-learning programmes for health and social care staff, it is equally important to ensure that they are updated or archived over an appropriate timescale. The six-step approach can be used again to review the curriculum and make any necessary updates and improvements.
KEY POINTS
- Autistic individuals experience difficulty accessing acute hospital services due to challenges in the physical environment and a lack of knowledge on the part of hospital staff
- Hospital staff are not always aware of an autism diagnosis, particularly in adult patients
- This article has described the development of an e-learning programme to educate staff about autism and consider the accessibility of their working environment
- There are numerous e-learning and online programmes aimed at healthcare staff, so it is important to demonstrate a programme's relevance
CPD reflective questions
- Do you always know in advance if individuals that you care for have a diagnosis of autism? If not, do you think that this should impact on how you run your service?
- Do you believe that you have the communication skills necessary to make the healthcare experience accessible and constructive for autistic individuals accessing your service? If not, how could you address this?
- Is your working environment accessible to autistic people? If not, would you consider using a resource to audit your environment and consider making small changes to improve the experience for all individuals accessing your service?