Young people and CP - experiences of health, well-being and support needs

Last time, I blogged about quality of life in children and adolescents. This blog stays close to the topic writing about young people with CP embarking on their road to independence, the challenges they face and their dreams about their future. Elisabet Björquist and colleagues from Lund University explored how young people with CP experience their own health, well-being and support needs on their way to becoming adults. They were hoping that the views will help them to see how transition programmes work in Sweden and whether there is anything that could be done to make transition easier for young people with CP.

The authors interviewed 12 Swedish 17-18 year olds either individually or in a group setting to learn about their views on important topics such as family, friends and love, hopes for the future and challenges in daily life and the support they would need. During the interviews, the authors used pictures to guide them through the discussions. 

From the interviews it became clear that they were looking forward to being adults, but were not always sure whether they were ready yet. They voiced the same hopes for their future as any other young person about to leave home: stressing how important good friends are and that finding a partner would be nice too, but sometimes being unsure how to get to know people. On the other hand they were aware of needing continued support to gain more independence. Not just for learning new skills such as cooking but also doing things like preparing a sandwich or tying shoe laces. 

The young people look forward to becoming more independent and think that the process should be a gradual one. Knowledge on what kind of support to expect and where to find it will help them through the process and allow them to take part in activities that matter to them.

Björquist, E.,  Nordmark E. & Hallström, I. (2014). Living in transition – experiences of health and well-being and the needs of adolescents with cerebral palsy. Child: care, health and development, 41(2), 258–265