Access provided by
London Metropolitan University
• To understand the importance of early identification of the risk of behaviour that challenges in young people with a learning disability
• To learn about the risk factors for behaviour that challenges in young people with a learning disability
• To gain access to a free screening questionnaire to identify young people with a moderate-to-severe learning disability at risk of emerging or escalating behaviour that challenges
Behaviour that challenges is relatively common among children and young people with a learning disability. Over time, without intervention, these behaviours may become persistent. They can put the individual at risk of harm to themselves and to others, have an adverse effect on their quality of life, and lead to inpatient admission or residential placement, potentially out of area. Early intervention could prevent or reduce behaviour that challenges before the need for specialist referral, placement or inpatient admission arises.
This article describes the development of a screening questionnaire designed to identify young people with a moderate-to-severe learning disability who are at risk of emerging or escalating behaviour that challenges. This freely accessible questionnaire supports the implementation of early intervention and can be used by health, social care and education professionals, including nurses working in a variety of settings, when reviewing the health, care or education of any young person with a learning disability.
Learning Disability Practice. doi: 10.7748/ldp.2020.e2105
Peer reviewThis article has been subject to external double-blind peer review and has been checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Clark K, Laxton-Kane M (2020) A screening questionnaire to identify the risk of behaviour that challenges in young people with a learning disability. Learning Disability Practice. doi: 10.7748/ldp.2020.e2105
With thanks to the Transforming Care, Children and Young People Steering Group in Derbyshire (2018/19) for its ongoing support and to the special schools that were recruited including Stanton Vale, Ashgate Croft, Peak and Stubbin Wood. Further thanks to all those from Derbyshire County Council who helped in the early days of the questionnaire’s development.
Published online: 15 October 2020
Behaviour that challenges is relatively common among people with a learning disability, according to the National Institute for Health and Care Excellence (NICE) (2015). NICE cites prevalence rates of behaviour that challenges of about 5-15% in educational, health or social care services for people with a learning disability, adding that rates are higher among teenagers and people in their early twenties, as well as in particular settings such as hospital settings (NICE 2015). Bowring et al (2019) found that one in every 5-6 adults with a learning disability known to services displayed behaviour that challenges. Nicholls et al (2020) found that 53% of children in a sample of 321 students from a special school for children with an intellectual disability displayed at least one behaviour that challenges; 36% displayed self-injurious behaviour, 30% displayed aggressive or destructive behaviour, and 26% displayed stereotypic behaviour. Research investigating early childhood found that 30% of children with a learning disability aged between 0 and 3 years displayed behaviour that challenges (Emerson and Einfeld 2011).
According to NICE (2015), behaviour that challenges includes aggression, self-injury (repeated self-inflicted behaviour such as people hitting their head or biting themselves), stereotypic behaviour (repeated behaviours such as rocking or hand flapping), withdrawal, and disruptive or destructive behaviour. Behaviour that challenges can put the individual at risk of harm to themselves and to others, and can have an adverse effect on their quality of life and freedom to access community facilities (Emerson and Heslop 2010). Over time, without intervention, these behaviours are known to become persistent and may continue into later life (Taylor et al 2011, Emerson et al 2014).
In the past, some vulnerable people in residential care or hospital, many of whom would have had a learning disability and/or autism spectrum disorder, have been subject to systemic abuse. Many remained in residential care or hospital for longer than necessary. Families and professionals have called for drastic improvements to services to prevent abuse and reduce the number of people cared for away from their homes and communities (Department of Health 2012). In 2015, NHS England published a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism spectrum disorder who display behaviour that challenges (NHS England 2015). In children and young people, identifying emerging behavioural and mental health issues early enables professionals to address these issues before they escalate, thereby preventing residential placement or inpatient admission to mental health services and reducing the risk of children and young people being cared for away from their home or community.
Measurement tools such as the Functional Analysis of Care Environments (FACE) (Clifford 1999) and the Behaviour Problems Inventory (BPI) (Mascitelli et al 2015) allow to monitor and manage risk in children and young people with a learning disability. However, these tools are typically used once a child or young person is known to specialist support services – such as child and adolescent mental health services (CAMHS) – to produce a ‘live’ assessment of risks or issues. The FACE and BPI do not encapsulate the wider holistic nature of the risks associated with behaviour that challenges, which are known to be multifaceted and relate to the individual but also to their wider familial, social and educational environment; for example, the child or young person may have a severe learning disability and also experience exclusion, deprivation, trauma, neglect or abuse (NICE 2015, Nicholls et al 2020). A measurement tool that would allow to identify risk factors for an escalation in behaviour that challenges before children and young people become known to services would aid the implementation of interventions that could be used in educational settings and by families (Cooper et al 2014).
Behaviour that challenges is amenable to change through interventions such as the implementation of a positive behaviour support (PBS) plan, which is a personalised plan detailing proactive strategies to prevent or reduce the events that trigger behaviour that challenges (LaVigna and Willis 2012, Powell and Jefferies 2019). Applying interventions such as PBS early and in familiar environments, such as the home or school, may prevent an increase in the severity of behaviour that challenges (Cooper et al 2014). In the longer term, such interventions may prevent tier 4 CAMHS hospital admissions or residential placements, which are often out of area and far from the person’s home (Emerson et al 2001, Mansell 2007).
This article describes the development of a screening questionnaire designed to identify young people with a moderate-to-severe learning disability at risk of emerging or escalating behaviour that challenges.
• Behaviour that challenges includes aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour
• Without intervention, behaviour that challenges can become persistent and warrant residential placement or inpatient admission
• Early identification of risk enables intervention aimed at preventing the behaviour from escalating
• Risk factors for behaviour that challenges in young people with a learning disability relate not only to the individual but also to their familial, social and educational environment
• A screening questionnaire has been developed to identify young people with a moderate-to-severe learning disability at risk of emerging or escalating behaviour that challenges
Before a learning disability CAMHS was commissioned in North Derbyshire in 2012, several young people with a learning disability and behaviour that challenges had been placed out of area. These out-of-area placements were expensive – sometimes costing up to £4,000 per week – and significant amounts of money were being used for a relatively small number of young people, which left less money for others in similar situations. Importantly, these placements meant that young people had to leave their family home and made it more difficult for professionals to monitor their care.
The authors of this article wanted to improve how health, education and social services work with families and young people with a learning disability and behaviour that challenges, so that these young people would be able to live locally, with or near their families, and so that the professionals involved in their care would be able to monitor it more closely and provide greater support. The rationale was that earlier intervention would reduce significant behaviour that challenges and/or mental health issues later in life. There was also a desire to make better use of the money available to support more young people across Derbyshire.
Informed by discussions with staff from special schools in the county, the authors’ vision was to develop a screening questionnaire that could be completed by school nurses, community nurses, teachers, social workers and other relevant professionals for any young person with a moderate-to-severe learning disability, and could subsequently be used to inform health or educational reviews. The initial plan was to use a five-point Likert scale for respondents to rate the extent to which a range of risk factors are present. Completion of the questionnaire would lead to recommendations, with high scores prompting professionals to discuss targeted support with families. It can be challenging for families to accept support – for example, when the parents have mental health issues themselves – but if professionals from schools or other services are aware of potential risk factors, this can provide an incentive to start a conversation with the family.
To develop the screening questionnaire, the authors conducted discussions with the multidisciplinary team at the learning disability CAMHS at Chesterfield Royal Hospital NHS Foundation Trust, as well as with the Transforming Care, Children and Young People Steering Group in Derbyshire (2018/19). In addition, a literature review was conducted.
The discussions and literature review allowed the authors to identify several factors that increase the risk of behaviour that challenges in children and young people:
• Male gender (McClintock et al 2003).
• Severe or profound learning disability (McClintock et al 2003, NICE 2015).
• Communication deficits (McClintock et al 2003, NICE 2015).
• Socioeconomic and psychological factors; for example, exclusion, deprivation, trauma, neglect and abuse (NICE 2015, Nicholls et al 2020).
• Environmental factors; for example, maternal resources, maternal health and well-being, parental behaviour (Emerson et al 2014).
• Stressful life events, such as bereavement or moving home, and subsequent suboptimal mental health (Hulbert-Williams and Hastings 2008).
• Suboptimal physical health (Hulbert-Williams and Hastings 2008, NICE 2015).
• Suboptimal health of the family, including parents and siblings (Baker et al 2003).
• Educational challenges; for example, exclusion, part-time timetabling or absence from school due to behaviour that challenges and/or physical or mental health issues; changes in the school environment such as a new teacher or routine (McIntyre et al 2006).
It was important that these risk factors were incorporated into the questionnaire. The literature review and discussions generated a pool of questionnaire items, which formed the basis of the initial version of the questionnaire. These items were categorised into individual, family-social and educational risk factors, and covered current and past elements; for example, a young person may have experienced a stressful life event in the past that may have increased their risk of developing behaviour that challenges later in life.
Following the generation of questionnaire items, the authors developed an online survey that was completed by 50 professionals working in educational, health or social care services, as well as by parents. This provided user feedback on the suitability of the questionnaire items. The survey was sent to all staff in the CAMHS and paediatrics teams in Chesterfield Royal Hospital NHS Foundation Trust, as well as to special schools in Derbyshire. Parents received an email from their child’s school asking them to complete the survey. The survey featured a list of the previously identified risk factors. Respondents were asked to select, in each category (individual, family-social and educational), the five factors they thought were the most important in relation to the risk of emerging or escalating behaviour that challenges. This enabled the authors to select the risk factors deemed the most important by professionals and parents.
Teachers from the special schools involved and parents of children attending these schools volunteered to provide additional feedback about the questionnaire. They identified that two- and three-point Likert scales were preferred to five-point scales. Their feedback also enabled the authors to amend the wording and layout of questionnaire items and therefore improve the questionnaire’s usability.
Young people were not invited to provide feedback on the questionnaire, which is acknowledged as a limitation. The topic was considered to be emotive and abstract for young people with a moderate-to-profound learning disability, and the authors felt that it was more appropriate to ask parents to represent young people’s views. Future research could seek the views of the young people in question.
The final screening questionnaire comprises 22 items. It is free, quick to administer and user friendly, and can be accessed at rcni.com/screening-behaviour It can be used by any professional working with young people with a learning disability.
The questionnaire has been developed as a holistic means of collating evidence about the presence of factors that increase the risk of a young person with a moderate-to-severe learning disability developing emerging or escalating behaviour that challenges and/or mental health issues, and therefore anticipate the risk of residential placement or inpatient admission and determine whether there is a need for early intervention. The questionnaire includes not only risk factors directly related to the young person, but also social and familial risk factors (for example, multiple home moves, single parent or carer household, parental physical or mental health issues) and educational risk factors (for example, low school attendance).
The first two items require a ‘yes or no’ response; all subsequent items are rated on a three-point Likert scale indicating whether the item is:
There is a corresponding recommendation for each item. For example, if item 5 (‘Current significant self-injurious behaviour (causing damage to the young person’s own body, occurring repeatedly) including self-biting, scratching, hair pulling, head hitting’) is identified as ‘present’ or ‘somewhat present’, the corresponding recommendation (recommendation 3) details guidance on developing a PBS plan for the young person and signposting them to further advice. An action plan can be developed based on the items rated as ‘present’ or ‘somewhat present’ and the corresponding recommendations.
There are no recommendations for items 7 and 8, which relate to historical and current abuse, nor for item 9, which relates to safeguarding. If these items are identified as ‘present’ or ‘somewhat present’, the professional completing the questionnaire must follow the safeguarding policies and procedures in place in their work setting.
It was initially intended to analyse the questionnaire’s validity and reliability based on data collected at four of the participating special schools. Data from about 270 children and young people were collected through teachers and teaching assistants completing the questionnaire. However, due to a high percentage of missing data – ranging from 6-22% per questionnaire item – analysis was not feasible. The focus remains on the questionnaire’s development and dissemination.
A special school nurse, community nurse or school nurse could complete the screening questionnaire for every child or young person in a given year group, or for an individual child or young person at each health or education review. For some young people, completion of the questionnaire may identify only a few recommendations and interventions, such as to set up a PBS plan and provide information on effective sleep hygiene, for example. For others, the risk factors identified may lead to recommendations that need to be explored with the family. For example, if an eight-year-old child has a history of self-injurious behaviour, limited verbal communication and siblings with additional health needs, and lives in a family who receives no additional support, it may be necessary to have a conversation with the child or family, or both, about self-injurious behaviour and how an assessment could be useful to try to understand the function of the behaviour, inform interventions and support skills development.
Embedding the questionnaire into learning disability nursing practice could support early intervention and therefore reduce behaviour that challenges, and/or mental health issues, in the short and longer term – which is in line with the national plan (NHS England 2015). Its use could also assist in preventing out-of-area placements.
Through the early identification of the risk of behaviour that challenges, the questionnaire supports the implementation of early interventions. It could be used by schools before a child or young person becomes known to services, or alongside supporting mental health services to prevent further escalation that could result in an out-of-area placement. Having a questionnaire that can be used with any child or young person with a learning disability, whether or not they meet the criteria for CAMHS support, is useful in that it allows to start a conversation and implement a PBS plan aimed at reducing behaviour that challenges, before the need of referral to specialist services arises.
Nurses working in a variety of services and settings would be well placed to support the prevention and reduction of behaviour that challenges by using the questionnaire. Disseminating the questionnaire beyond health services, including in education and social care, would support the intended goal of screening for risk factors for behaviour that challenges before referral to specialist services.
To obtain an accurate and comprehensive view of the child or young person’s risk, it is suggested that the questionnaire is completed by a professional working in health, social care or education or by a small multidisciplinary team. It may be completed in partnership with parents. The questionnaire should be completed either annually when reviewing the child or young person’s health, care or education, or whenever new concerns about behaviour that challenges arise. It can also be completed as part of a general and more regular review of care and treatments, for example at six monthly intervals.
A screening questionnaire has been developed to identify young people with a moderate-to-severe learning disability who are at risk of emerging or escalating behaviour that challenges and/or mental health issues, generate appropriate recommendations, and prompt the implementation of interventions where needed. It is designed for use by health, social care and education professionals and is freely accessible. Validity and reliability analysis could not be completed, but the questionnaire is believed to support the identification of the risk of behaviour that challenges in young people with a learning disability before the need for specialist referral, residential placement or inpatient admission arises.
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