On Disability Matters this week, host John Comiskey spoke with Carmel Doyle, who is involved in a Trinity College Dublin study on children and young adults with intellectual disabilities, and who present with behaviours that challenge.
Why this research is needed
Doyle explained how her own professional background shaped her involvement:
“I’m an intellectual disability nurse but I’m also a children’s nurse, so much of my research is with families and children who have a disability. All of our practice must be evidence-based, so engaging in research is really important.”
The project she discussed was funded by the National Disability Authority (NDA) and forms part of a larger programme of work.
“It’s what we call a desktop research project where we scope the literature on a particular topic. The NDA funded it and the topic was behaviours that challenge. There are many children and young adults who have behaviours that challenge and we don’t often know why that is. What we wanted to establish was what are the factors that actually lead to those behaviours, and also how we might prevent and manage them.”
A wide net, a clear focus
The research team examined literature from the past decade, with a particular focus on children with autism and intellectual disabilities.
“We only spanned the last ten years because we wanted currency and up-to-date literature. There has been an increased recognition around diagnosis of autism and intellectual disability, so there was lots of material out there for us to look at.”
The scope was broad in terms of age:
“We included children from zero up to young adults of 24. Nationally we’re finding that adolescents heading towards young adulthood often have difficulties around their behaviours and that can lead to family breakdown and possible crisis situations.”
Family at the centre
A recurring theme was the role of families:
“Families are the crux of everything that we do with children. If there is something awry with a child, it always impacts family functioning. The majority of children live at home with family, so families are always involved when we scope out literature or engage in research.”
Doyle also pointed out the ripple effects of behaviours that challenge:
“When behaviours are engaged in by children, that has a ripple effect on the rest of the family — brothers and sisters, but also the parents. If families can’t cope and don’t have coping mechanisms in place then there’s evidence of distress, and that leads to what we call crisis.”
What the study found
The review identified a range of factors linked to behaviours that challenge.
“Some of those findings were around things like parental behaviour and stress, and sometimes that can actually be a trigger. Mental health issues came out as a big flag. Poor sleep, poor social skills, difficulties with communication, and issues around feeding were also highlighted.”
Access to services — or the lack of it — was another major issue:
“A lack of access to support services, or when families don’t know how to navigate those services, can cause family breakdown and crisis. Those crises tend to happen out of hours, at weekends, when access to services is extremely limited. That has a really negative impact on the family unit.”
And when families can no longer cope, outcomes are not always positive:
“Invariably what families do when things like this happen is they turn up at an emergency department. Crisis can actually lead to the child or young adult being removed from the home and placed in an emergency placement to give respite to both the child and the family — and that isn’t always the best outcome.”
What comes next
This first phase has now concluded, and the NDA is building on its findings.
“The study is complete and has gone back to the NDA. They are currently undertaking a study at the moment based on our findings. They went out with questionnaires to parents and families, and to multidisciplinary teams, and they are hoping to have a report published by the end of this year on the whole area of crisis and what leads to crisis situations.”
For Doyle, the importance of such work is clear:
“These crises are traumatic for both the child and the family. We need to explore our referral system and how services like CAMHS and CAMHS-ID work. At the moment, there isn’t a particular model or framework that addresses children and young adults with disability and behaviours that challenge. That’s what has to be looked at.”
Disability Matters airs every Thursday at 4PM on Phoenix 92.5FM, with repeats on Monday at 3PM and Tuesday at 7AM & 3PM. Podcast available after each show on Mixcloud and on bcil.ie/radio.