Challenging behaviour can have a significant impact on people with learning disabilities, as well as family members, friends and carers. Behaviours that challenge may include self-injury, hurting others, destructive behaviours and eating inedible objects.
Research suggests that roughly one in seven people with learning disabilities exhibit challenging behaviour, and Pete McGill, Professor of Clinical Psychology of Learning Disability, Tizard Centre at University of Kent, says this is because some children with learning disabilities never develop the social skills to communicate their needs.
He explains: “Most children without learning disabilities display lots of challenging behaviour during the ‘terrible twos’, but usually this doesn’t last because most two-year olds develop a range of communication and social skills which enable them to get what they want and need more easily. Many children with learning disabilities do not develop these skills and are left with the same needs as other children their age but are much less able to get them met.”
• Further reading: New toolkit helps parents and carers manage challenging behaviour
However, the causes of challenging behaviour are often overlooked, and this can affect how quickly and effectively children are treated.
To combat this, the University of Warwick and the Cerebra Network have developed a checklist to identify and monitor challenging behaviour (otherwise known as ‘behaviours of concern’) in children with a learning disability.
Here, project lead Dr Hayley Trower explains how the checklist works in practice.
The Checklist Project is a three-year research study which looks at challenging behaviour in children aged 4-18 with a moderate-profound learning disability.
Dr Hayley Crawford, the principal investigator, chose to focus on this group because they often have additional physical sensory, cognitive and/or social impairments that place them at high risk for behaviours that challenge.
The checklist has been coproduced with researchers, parents and clinicians to help parents decide whether something needs to change. Once the checklist has been completed, it can be taken to an appointment with a paediatrician or other healthcare professional to discuss any concerns and whether a referral is needed.
While the checklist is primarily aimed at children, the researchers say it could also be used for adults.
To sign up to The Checklist Project, click here or contact Dr Hayley Trower at [email protected].
“By looking at the checklist, parents can look for changes in normal behaviour and break them down into possible causes,” Dr Trower explains.
“Everyone has a baseline of who they are, and anything that is different from that baseline could help to identify a problem which is causing a ‘behaviour of concern’.”
“Behaviours of concern are more common in people with a learning disability who have a developmental delay. This is because they find it more difficult to communicate their needs,” Dr Trower says. “They may self-injure, such as hit their head or scratch themselves, or show aggression towards others or destroy property. These are usually the key behaviours, but there might be other behaviours too.”
The checklist allows parents to look through the most common causes of challenging behaviour and think about their own child. Firstly, they are asked to name the behaviour, how long and how frequently it occurs, and how often a carer needs to intervene. They can also rate the behaviour on a scale from ‘no signs’ to ‘definite signs’ and note the distress score for both the parent and the child.
Parent and carers are then asked to think about the causes of this behaviour. This may include pain and discomfort, sensory or social avoidance/seeking, anxiety, low mood, sleep difficulties, impulsivity, and the need for a routine.
“The checklist doesn’t actually look like a list; each checklist item is housed in a box that has some guidance on what to look out for,” Dr Trower explains.
“For example, if it’s pain and discomfort, we suggest parents look out for certain facial expressions, like lines in the centre of the forehead, groaning, crying, things like that.
“Ear pain and dental pain – which is generally caused by gastro-oesophageal reflux – are both really common. However, they are also the most overlooked. That’s why we’ve included those specific questions in on the back page in the notes.
“Anxiety and low mood are both common triggers as well, and we highlight some signs of this too, such as clinging, resisting and tensing up,” she said.
Dr Trower says it is important to note that behaviours are often interlinked. For example, pain may affect sleep or cause a low mood, which can lead to more behaviours of concern.
Parents are also asked to consider the child’s communication skills and whether the child can communicate their needs, as well as whether the behaviour is learned i.e. caused by a particular trigger. If it’s a learned behaviour, it tends to stop when the trigger is removed or stops.
The checklist is designed to completed every two to four weeks so parents can compare how behaviours change over time. It can then be taken to routine appointments with your paediatrician, to guide conversations, build relationships and to give parents confidence.
“Families have told us they go to the doctor and forget everything they wanted to ask. The checklist enables clinicians and parents to focus on exactly how the child has been behaving and why.
“A key goal is to frame these conversations and ensure that they’re more fruitful so that referrals can be made,” Dr Trower explains.
While the checklist has primarily been designed to be discussed in healthcare settings, Dr Trower says it could be a useful tool in other settings, too.
“You may only see your doctor once every six months, so we think it could also be a useful tool to take to school teachers, social workers or other the professionals that may be able to shed some light on the findings from the checklist,” she explains.
“They may not be able to do anything directly, but it may help them to better understand the child’s behaviour. This in itself can be helpful to better understand the behaviour and why it’s happening.”
Dr Trower says their research team have learnt through years of clinical experience and scientific evidence that challenging behaviour is a “clear problem for parents”, yet many struggle to get the right support.
“Parents tell us there’s something missing in terms of support for them, and many of the causes of challenging behaviour, like pain and discomfort, are often overlooked by healthcare professionals. This is often the case in all sorts of clinical environments when staff are very busy,” she said.
If the causes of challenging behaviour remain unidentified, there is a risk that the individual will be ‘treated’ with medication unnecessarily. The Challenging Behaviour Foundation says that medication should only be prescribed following a proper assessment and where a clear reason for using medication has been identified. Despite this, there has been a long history of excessive and inappropriate use of major tranquillising medication for “treating” challenging behaviour.
Dr Trower says the checklist is therefore an important way of reducing the overmedication of people with learning disabilities. She said: “Addressing behaviours that challenge in people with learning disabilities requires a multi-faceted approach beyond psychotropic medication. Overprescribing risks suppressing these behaviours without addressing the underlying causes, impeding the opportunity for greater understanding of an individual and reducing the likelihood of tailored support.”
Dr Trower and Dr Crawford are now conducting a pilot feasibility study with 50 parents and 10 clinicians whereby parents complete the checklist along with several validity measures.
“At the moment, we’re trying to find out whether parents and carers find the checklist useful,” she explains. “Is it feasible? Does it help with referrals? Would they use it again? Things like that. We’re trying to collect all this data so we can improve it where necessary.”
“If our qualitative data shows it is useful, we would like to roll it out as a much larger study, perhaps a randomized control trial. At this point, we would also want to disseminate the checklist to as many people as we can. We plan on doing this through charities, syndrome support groups, schools and GPs. It would always be freely available to use.”
However, Dr Trower says currently, they are struggling to get the responses they need.
“We want to have 50 people all together. So far, I’ve posted about 35 questionnaire packs but I’ve only had 10 completed packs come back to me. We haven’t had as much of a response as we were hoping for.
“The questionnaire pack takes about 90 minutes to complete, and I know parents are really busy. Life is hectic, especially when you’ve got children with additional needs.”
“We are also offering a £10 shop voucher to every parent that returns a completed questionnaire pack to us,” she said.
Dr Trower says her key piece of advice is to trust your gut. If a new behaviour comes on suddenly, or if it has been ongoing for a long period of time, it is likely there is an underlying cause.
“Trust your instinct; you know your child best, so go with your gut,” she says.
To sign up to The Checklist Project, click here or contact Dr Hayley Trower at [email protected].
