1. The impact of transition to adulthood on health and wellbeing in young people with learning disabilities: a qualitative study
Ms Genevieve Young-Southward1, Professor Sally-Ann Cooper1, Professor Chris Philo2
1University of Glasgow, Institute of Health and Wellbeing
2University of Glasgow, School of Geographical and Earth Sciences
Introduction
Transition refers to the movement from childhood to adulthood, including leaving school, and moving from child to adult health and social services. While poor outcomes for the population with learning disabilities across the domains of social relationships, independent living; and community involvement are well documented, there is a lack of evidence related to the impact that transition may have on health and wellbeing in this population
Research Questions
Does transition to adulthood affect health and wellbeing in young people with learning disabilities, and in what particular ways?
What supports (formal and informal) are helpful for families during transition?
Methods
Semi-structured interviews were conducted with young people with learning disabilities between the ages of 16 and 24 years (n = 11) and their parents/caregivers (n = 20), recruited from special education schools and charities providing services to young adults with learning disabilities
The interview topic guide was informed by a pilot focus group study and covered: leaving school and child services; health; support; and relationships
Interviews were audio-recorded and transcribed verbatim Transcripts were analysed using thematic analysis, using a combination of emic and etic coding categories
Design
Qualitative study enabling young people with learning disabilities and their parents/caregivers to reflect on their own experiences of transition
Results
The primary impact of transition was on mental health, with young people feeling stressed and anxious during transition. This was largely attributed to a lack of opportunities for meaningful activity following school exit; a lack of support during the transition; and difficulties related to ‘growing up’ and developing independence from parents
Master theme
Sub-theme
Supporting quote
Mental health
Anxiety/stress
“Sometimes he can get a wee bit emotional … and he’ll look as if he’s going to start crying … he really doesn’t want to talk about [leaving school].” (Sam’s mum)
Challenging behaviours
“Her anger, her mood swings and things like that, that really worries me , that’s got worse [since leaving school].” (Celia’s mum)
Something to do
Lack of post-school activity
“I’m quite worried ‘cause there isn’t any work there … there’s nothing out there.” (Mike’s gran)
Mental health implications of having “nothing to do”
“Caroline is … struggling because she doesn’t have any routine at the moment … it’s like ‘What am I doing today’ … and there’s absolutely, there’s nothing.” (Caroline’s mum)
Growing up
Stigma
“[I’m worried about] going into my first job ‘cause I don’t know how I’m going to be, like, taken … ‘cause I’m quite different from other people.” (Sally)
Independence vs interdependence
“Just the worry that you’ve got from things like crossing roads … you don’t know what she’s doing, how well she’s doing outside … it’s fine when you’ve got her by the hand when she’s small and you can do things for her.” (Sally’s grandad)
Services and supports
Inadequate post-school support
“I don’t see him getting the same amount of stimulation [after school] as what he gets … at school … the quality of training, the knowledge base of staff isn’t the same as what it is in schools.” (Jake’s mum)
Poor transition planning
“In all these glossy books you get it’s supposed to take a year to a year and a half, transition, we’re … beginning of April and you’re talking the end of April before we’re gonna get a budget so that leaves like two months till school leaves.” (Carol’s dad)
Lack of funding
“All I hear is ‘there’s no money in adult services, no money’.” (Molly’s mum)
Conclusions
Transition to adulthood may have a negative effect on mental health in the population with learning disabilities
The transition from school must be better supported, including support to access meaningful activity following school exit, in order to ease anxiety during this difficult period