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• To identify the need for a knowledgeable workforce supporting people with learning disabilities in the community
• To read about research showing that social care staff lack knowledge about learning disability
• To recognise the role of learning disability nurses in contributing to improve social care staff’s knowledge about learning disability
Background It is important for social care staff to understand what a learning disability is so that they can identify people with learning disabilities and provide them with the support they need.
Aim To explore whether there have been changes in the knowledge of social care staff about the diagnostic criteria for learning disability more than 20 years after the researchers first explored the topic.
Method A sample of 264 social care staff were asked to describe what they understood by ‘learning disability’. Their responses were compared with the three diagnostic criteria of learning disability – that is, significant impairments in intellectual functioning, significant impairments in adaptive functioning and childhood onset.
Results Impairments in intellectual functioning was the most commonly identified criterion and childhood onset the least commonly identified criterion. Only 5% of participants (n=13) identified all three criteria, while 57% (n=150) identified none or only one of the criteria.
Conclusion While the results are an improvement on those found more than 20 years ago, they still indicate an ongoing need for improved understanding, among social care staff, of what a learning disability is, and learning disability nurses have a role to play in this.
Learning Disability Practice. doi: 10.7748/ldp.2022.e2182
Peer reviewThis article has been subject to external double-blind peer review and checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
McKenzie K, Murray G, Martin R et al (2022) Knowledge of social care staff about learning disability: 20 years on. Learning Disability Practice. doi: 10.7748/ldp.2022.e2182
Published online: 14 April 2022
Today the term learning disability, or intellectual disability, is used to refer to people who need additional support because of significant impairments in their intellectual and adaptative functioning that started in childhood, as per the diagnostic criteria for learning disability proposed by the American Psychiatric Association (APA) (2013). However, since learning disability is a social construct, the reasons for categorising people as having a learning disability have varied according to the social context.
For example, in the past people have been categorised as having a learning disability for economic reasons. This was the case after the industrial revolution in Western Europe, when the term was used to identify people who were unable to support themselves financially and would therefore need poor relief, either at home or in an institution. In the course of the 19th century, learning disability became increasingly viewed from a medical perspective and standardised assessment methods were developed to identify people in that category (Murray and McKenzie 2020).
This medical perspective on learning disability persisted for many years. It was not until the 1960s and 1970s that the rise of the civil rights movement, the development of the philosophy of normalisation (Wolfensberger 1972) and public outrage at the abuse perpetrated against people with learning disabilities inside the institutions where they lived triggered a process of deinstitutionalisation. In the UK, national policies that aimed to promote the inclusion of people with learning disabilities in the wider community were published in the early 2000s – see for example Scottish Executive (2000) and Department of Health (2001).
Associated with deinstitutionalisation was a recognition of the need for a well-trained and knowledgeable workforce who would be adequately equipped to support people with learning disabilities in the community. However, in the late 1990s, research by McKenzie et al (1999) identified low levels of knowledge about learning disability among health and social care staff, raising concerns about potential negative effects on the support provided to people with learning disabilities.
More than 20 years later, the need for a well-trained and knowledgeable workforce to support people with learning disabilities in the community remains. There are three main reasons for this:
• There is an ongoing need to develop high-quality community services for people with learning disabilities. In 2014, after another report of institutional abuse of people with learning disabilities - this time at Winterbourne View - the urgent need to end inappropriate institutional care was highlighted once more and became a government priority (NHS England 2014). The change from institutional to community-based support for people with learning disabilities is ongoing.
• The early identification of a learning disability can result in early interventions which can benefit the child and wider family (Guralnick 2017), for example by improving the child’s adaptive and academic skills (Sheppard and Unsworth 2011, Spooner et al 2019).
• People with learning disabilities continue to experience significant health inequalities, including an increased risk of dying from avoidable medical causes, compared with the general population ((Emerson et al 2016, Heslop et al 2021).
In 2019, the government published the Core Capabilities Framework for Supporting People with a Learning Disability (Skills for Health et al 2019). The framework, according to which all staff who work with people with learning disabilities are expected to ‘know what is meant by the term learning disability’, outlined the main areas of knowledge required. In parallel, the Oliver McGowan Mandatory Training in Learning Disability and Autism was developed to provide health and social care staff working with people with learning disabilities and autistic people with the necessary knowledge and skills (Department of Health and Social Care (DHSC) 2019).
Limited knowledge about learning disability can lead to its delayed or missed identification (Emerson and Glover 2012, McKenzie et al 2019). This, in turn, can prevent people with learning disabilities from accessing interventions designed to improve their skills, health and quality of life. In relation to health, people with learning disabilities who are not placed on the GP learning disability register (an all-age list of people registered at a general practice in England who have a learning disability) may miss out on healthcare initiatives (NHS England 2018) such as annual health checks (Learning Disability Matters for Families 2022).
Research has suggested that medical students and qualified healthcare professionals continue to have deficits in their knowledge about learning disability (Harwood and Hassiotis 2014, Whittle et al 2018) and this can reduce or prevent people’s access to high-quality healthcare services. Low levels of staff knowledge about learning disability may act as a barrier to identifying people with learning disabilities who find themselves in situations where they are particularly vulnerable and in need of support, for example when they are in contact with criminal justice services (Townsend et al 2020) or services for the homeless (Brown and McCann 2021).
By contrast, the timely identification of people with learning disabilities can bring benefits including a better understanding of the person and the provision of support and interventions that meet their needs (McKenzie et al 2021). Greater knowledge about learning disability has also been associated with more positive attitudes towards people with learning disabilities (Alnahdi et al 2020).
People with learning disabilities are a heterogeneous group with a wide range of abilities and needs. Nonetheless, the three diagnostic criteria for learning disability proposed by the APA (2013) are important as indicators of the broad areas in which people with learning disabilities are likely to need support (Williams et al 2009). These diagnostic criteria are (APA 2013):
• Significant impairments in intellectual functioning, for example in reasoning, planning and abstract thinking.
• Significant impairments in adaptive functioning, for example in communication, social interactions and skills required for independent living.
• Childhood onset.
• Learning disability nurses can use their informal contacts with colleagues in health and social care to educate them about what a learning disability is and what support needs people with learning disabilities are likely to have
• Learning disability nurses can support managers in social care services to disseminate information about learning disability to staff
• Learning disability nurses can disseminate information about formal training initiatives and the Core Capabilities Framework for Supporting People with a Learning Disability
• Learning disability nurses can signpost colleagues to evidence-based screening tools for identifying people who are likely to have a learning disability
The aim of the study was to explore whether there have been changes in the knowledge of social care staff about the diagnostic criteria for learning disability more than 20 years after McKenzie et al (1999) first explored the topic.
The study, which was conducted in 2020, used an observational design. This type of design measures the responses of participants without using any type of intervention to try to change these.
Participants were recruited from social care services in North East England. Potential participants were sent a link to a website containing information about the study and a section where those who wanted to take part could indicate their consent and provide a code. Participants were then asked to provide demographic information including age, gender, role and length of time working in learning disability services. After that they were asked to ‘provide a brief description of [their] understanding of the term learning disability’ and to type their response in a free-text box.
Participants’ responses were subsequently coded based on a comparison with the three diagnostic criteria for learning disability. Participants were allocated one point for each of the diagnostic criteria that they had identified. They could therefore score between zero and three points, a higher score being interpreted as indicating a greater knowledge about learning disability. All responses were coded by two raters and any disagreements were resolved through discussion.
Descriptive statistics were used to provide frequency data (numbers and percentages). Cochran’s Q test was used to explore whether there were any significant differences in the frequency with which participants identified each of the three diagnostic criteria for learning disability. Where significant differences between the three criteria were found, McNemar tests were used to explore where these differences lay. A student’s t-test was used to explore whether there were significant differences in knowledge scores between participants in managerial roles and participants in other roles. Finally, Pearson’s correlation coefficient (r) was used to explore whether there was a significant relationship between the length of time participants had worked in learning disability services and their total knowledge scores.
Ethical approval for the study was granted by the first author’s university ethics committee. All participants provided consent and responses were anonymous. Participants were asked to provide a code to identify their data should they subsequently wish to withdraw from the study.
Participants were 264 staff working in social care, of whom 65 (25%) were male and 198 (75%) were female (one person did not answer the question about their gender). Their ages ranged from 19 to 64 years (mean=40.7 years, standard deviation (SD)=11). The vast majority (n=259, 98%) described themselves as being white British or white ‘other’. Just over half (n=137, 52%) were direct support workers, 85 (32%) held a managerial post, 28 (11%) were team leaders and three (1%) described their role as ‘other’. For 11 participants (4%), information about the role was missing. Participants had worked in learning disability services for between six months and 35 years (mean=11.8 years, SD=8.3).
Table 1 shows the numbers of participants who identified each of the three diagnostic criteria for learning disability, with examples of their responses.
Cochran’s Q test showed that there were significant differences in the frequency with which each of the three criteria were identified by participants. The value of the test was Q=189.8 and the probability that the result was due to chance was less than 1 in 1,000 (P<0.001). A series of McNemar tests (using a Bonferroni correction for multiple comparisons) showed that participants were significantly more likely to identify the criterion of impairments in intellectual functioning than either the criterion of impairments in adaptive functioning or the criterion of childhood onset. Participants were also significantly more likely to identify the criterion of impairments in adaptive functioning than the criterion of childhood onset. In all cases, the probability that the result was due to chance was less than 1 in 1,000 (P<0.001).
Table 2 shows the number of participants who identified none, one, two or three of the criteria.
The student’s t-test showed a significant difference in total knowledge scores between participants in managerial roles and participants in other roles. The value of the test was t=2.04 and the likelihood of the result being due to chance was less than 5 in 100 (P=.022). Participants in managerial roles had greater knowledge about learning disability (mean=1.51, SD=0.77) than those in other roles (mean=1.31, SD=0.73).
Pearson’s correlation coefficient showed that there was a significant correlation between the length of time participants had worked in learning disability services and their total knowledge scores. Participants with longer experience had higher scores. The value of the test was r=0.191. The probability of the result being due to chance was 2 in 1,000 (P=.002).
The need for a well-trained and knowledgeable workforce, which is linked to the ongoing change from institutional to community-based support for people with learning disabilities, is as important today as it was 20 years ago. Having basic knowledge about the diagnostic criteria for learning disability is important to be able to understand the broad areas in which people with learning disabilities are likely to need support (Williams et al 2009). It also supports the identification of learning disability in the first place (Emerson and Glover 2012, McKenzie et al 2021).
The study found that the most frequently identified diagnostic criterion for learning disability was that of impairments in intellectual functioning, 75% of participants making some reference to this. However, participants’ level of understanding of the criterion varied. Few participants described people with learning disabilities as having ‘significant impairments in intellectual functioning’. Most only referred broadly to ‘challenges with learning’. This suggests that there could be confusion between learning disability and a specific learning difficulty such as dyslexia, for example. Indeed, Harwood and Hassiotis (2014) found that undergraduate medical students often confused the two. This confusion is perhaps understandable given that there have been changes in terminology over time, that some people with learning disabilities prefer to be referred to as having a learning difficulty and that different terms for learning disability are used interchangeably in different contexts (Cluley 2018).
The second most frequently identified criterion was that of impairments in adaptive functioning, referred to by just over half of the participants (51%). The criterion of childhood onset was only referred to by 12% of participants. This could reflect the fact that participants mainly worked in adult services and might therefore have been less aware of that criterion. However, one of the key learning outcomes of the Core Capabilities Framework for Supporting People with a Learning Disability (Skills for Health et al 2019) is that staff understand ‘that a learning disability is a lifelong condition’.
The overall pattern of results was similar to that found by McKenzie et al in their 1999 study, which had also explored staff knowledge about learning disability. McKenzie et al’s 1999 study had 143 participants from health and social care working in health settings (n=47), residential settings (n=30), day care settings (n=39) and general practices (n=27). As in the present study, participants had been asked to describe what they understood by ‘learning disability’ and their responses had been compared with the three diagnostic criteria. In both studies, the criterion of impairments in intellectual functioning was significantly more likely to be identified than the other two, followed by the criterion of impairments in adaptive functioning.
In the present study, participants’ role and the length of time they had been working in learning disability services affected knowledge scores. Participants in managerial roles and those who had more experience had greater knowledge about learning disability. This was consistent with the results of McKenzie et al (1999), who also found a positive relationship between experience and knowledge.
One difference between the two studies was the percentage of participants who identified the ‘intellectual functioning’ and the ‘adaptive functioning’ criteria: it was higher among participants in the present study (n=264) than among participants working in residential settings (who are the closest to the present study’s population) in the 1999 study (n=30) (McKenzie et al 1999). The percentages of participants who identified each of the three diagnostic criteria in the present study and in the 1999 group of participants working in residential settings are shown in Table 3. The percentages were lower in 1999 for the first two criteria but there was no difference for the third criterion.
Criterion | % of participants (n=264) who identified the criterion in the present study | % of participants working in residential settings (n=30) who identified the criterion in McKenzie et al (1999 ) |
---|---|---|
Significant impairments in intellectual functioning | 75% | 66% |
Significant impairments in adaptive functioning | 51% | 30% |
Childhood onset | 12% | 12% |
In terms of overall knowledge, only 5% of participants in the present study identified all three criteria but the proportion was even lower in 1999, with just 2% of participants working in residential settings identifying all three criteria (McKenzie et al 1999). In the present study, 57% of participants identified none (11%) or only one (46%) of the three criteria. This was an improvement compared with 1999, when 84% of participants working in residential settings identified none (24%) or only one (60%) of the three criteria (McKenzie et al 1999).
However, overall, the results of the present study still indicate that there is an ongoing need for improved understanding, among social care staff, of what a learning disability is. Previous research has suggested that training about learning disability can make a positive difference to staff’s knowledge and attitudes (Rae et al 2011, Harwood and Hassiotis 2014, Jones et al 2015). The ongoing development and roll-out of the Oliver McGowan Mandatory Training in Learning Disability and Autism (DHSC 2019) in health and social care settings may go some way to address the knowledge gaps that still exist. Learning disability nurses are well placed to support this wider training effort since they often liaise with other healthcare professionals and with social care staff.
Learning disability nurses can use informal opportunities to educate their colleagues in health and social care about what a learning disability is and explain what the diagnostic criteria mean in terms of the broad types of support people with a learning disability are likely to need. These support needs may concern people’s intellectual understanding of the world, their daily life skills (Williams et al 2009) and/or the health issues they commonly experience (Emerson et al 2016).
Learning disability nurses can raise awareness of formal training opportunities, such as the Oliver McGowan Mandatory Training in Learning Disability and Autism (DHSC 2019), and of the requirements of the Core Capabilities Framework for Supporting People with a Learning Disability (Skills for Health et al 2019). They can support managers in social care services to develop ways of disseminating basic information about learning disability more widely to staff. They can also signpost others to reliable sources of information about learning disability and to evidence-based screening tools for identifying people who are likely to have a learning disability – see ‘further resources’. Research has suggested that, among other benefits, the use of such tools can increase awareness of learning disability (McKenzie et al 2021).
Participants were all from North East England, which may limit the generalisability of the results. It may be that staff from different geographical areas would have different levels of knowledge. Participants responded to the questions in writing. A different method, such as interviews, might have encouraged participants to give longer, more detailed responses. These limitations must be kept in mind when considering the results.
The study found a similar pattern of results to that found by McKenzie et al in 1999, more than 20 years ago. There was evidence of some improvement in social care staff’s knowledge about learning disability. The results do, however, indicate that knowledge gaps remain. Learning disability nurses have a role in supporting formal and informal efforts to improve social care staff’s knowledge about learning disability.
Oliver McGowan Mandatory Training in Learning Disability and Autism
hee.nhs.uk/our-work/learning-disability/oliver-mcgowan-mandatory-training-learning-disability-autism
Learning disability screening tools
learningdisabilitymatters.co.uk/tools
North East and Cumbria Learning Disability Network
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