The Road Ahead - literature review

7. Feelings and emotions at transition

• Key areas of information need

Transition to adulthood is an emotionally demanding time. Not only are young people experiencing body changes that can cause emotional 'ups and downs', but external changes (such as leaving school) and the need to make important decisions about the future can be stressful and challenging for young people and their families.

Young people with learning difficulties appear to be at greater risk of mental health problems than the general population. An inquiry conducted by the Foundation for People with Learning Disabilities (Carpenter, 2002) found that four out of ten young people with learning difficulties would experience mental health support needs during their adolescent years. Emerson (2002, quoted in Morgan, 2003) confirms this, estimating that one in four young people with learning difficulties will have mental health problems at any one time, compared with one in ten among young people generally. There is a wide variation in reports of prevalence of mental ill health in people with learning disabilities. The prevalence rates in adults with learning disabilities, for instance, range from 10% to 80%, depending on many factors, which include:

• The nature of the conditions examined.
• The ways in which diagnosis, or identification, was made.

Hatton (2002) reviewed prevalence studies, and found a variable rate reported - between 10-40%, depending on whether behavioural disturbance is included.

The continued confusions over assessment and diagnosis are matched by a confusion over services. Williams (2003) found that learning disability services and mental health services needed to work more closely together. Training was also an issue. Williams talked retrospectively with young people with learning difficulties and mental health needs about transition and found that only one of the professionals involved at transition had training in mental health issues, but many had nevertheless provided a lot of emotional support to the young people and their families, and had built up their own understanding of anger management and support. They felt it was important to work with the whole family, as well as building up a strong relationship with the young people themselves, but would have liked more support in their jobs.

Other research also shows that process of transition to adulthood will affect the mental health status of young people with learning difficulties and their families (Blacher, 2001). Hanley-Maxwell et al (1995, quoted in Clegg et al, 2001) identify high levels of carer stress at transition which no amount of information could alleviate. Similarly, for all the young people with learning difficulties involved in Williams' (2003), study all had mental health issues that had escalated at the time of transition, or new problems that had emerged.

If transition is clearly a trigger for emotional issues, the service response will often be to provide a medical or psychiatric label. However, emotional distress can also be understood as a response to life stresses and to inadequacies of services. Much depends on the model of mental health support that we adopt. Williams and Heslop (in press) propose that it is important to consider a social model of mental health distress. In practice, this is the model that informs support provided, for instance, by Connexions. Personal Advisers in Connexions (Williams, 2004) claim that they respond to emotional problems by trying to improve the life chances of young people, using 'person centred approaches'. Many young people consulted as part of Rowland-Crosby et al's (2003a) study said that thinking about the future was scary, and that they were very worried about moving on from school. However, they also said that talking with a Connexions PA had helped them not to worry so much.

Emotional and psychological transition for young people has attracted very little academic attention. Many young people with learning difficulties will remain emotionally dependent on parents despite living independently, or may have conflict-ridden relationships with parents and support staff. Achieving emotional autonomy may be particularly difficult for learning disabled young people (Zetlin & Turner, 1985, quoted in Clegg et al, 2001).

Access to emotional support is essential at transition, for young people and families alike. The young disabled people involved in the My Voice, My Choice consultation wanted professionals to remember that transition is about what happens in your head as well as your body and that they needed time to talk about feelings and relationships, not just to focus on the process of transition and the move to adult services (My Voice My Choice, Barnardo's undated). Williams and Heslop (in press) found that young people with learning difficulties themselves identified friends, rather than formal services, as the single most important factor in their emotional support. Morgan (2003) outlines how the emotional resilience of young people with learning difficulties might be encouraged at transition, and suggests that these factors are crucial:

• Support for the family and working with the family from an early age.
• Attention to physical health needs - these can affect mental health.
• Support for communication - being listened to, having a communication passport.
• Awareness of bullying, abuse and loss - support through these times and to have their feelings acknowledged.
• Schools, colleges and transition - should play a role in providing options.
• Self-advocacy and circles of support - having friends around you, sticking up for others and having information about their rights make young people feel better and more positive about themselves.
• The provision of services to meet the needs of young people when they experience mental health problems - no delays, and a recognition that young people with learning difficulties do experience emotional problems.
• Access to primary care services - these are the first port of call but can be ill-equipped to deal with young people's mental health problems.
• A need for clear pathways into services - it can be difficult to get help, and provision may be variable and patchy.
• Multi-disciplinary approach - holistic approach to meeting young people's needs, with a range of services working together. Mental health problems can sometimes be addressed by adjusting the environment of the young person.
• Awareness and recognition of the needs of young people from Black and minority ethnic communities - they experience additional stress related to racism.

Key areas of information need for young people with learning difficulties and their families

• What sort of worries and feelings (positive and negative) might young people with learning difficulties have at transition?
• How do we recognise and diagnose symptoms of mental health distress in young people with learning difficulties?
• What emotional support is there for young people with learning difficulties? Friends, teachers, keyworkers, PAs? Websites and helplines? Recognition that 'changes in your head' are part of growing up.
• Feelings about growing up - emotional changes; mood swings; body changes.
• What sort of worries and feelings might families have at transition?
• What emotional support is available to families to help them deal with worries and feelings at transition? Support groups? Talking to other families? Other support/strategies?
• There will be different issues to consider for young men, young women, young people from minority ethnic groups, young people with high individual support needs, and young people living away from home.