Children & young people's views on quality of life

“I want to be treated the same as my brothers!”

Views about Quality of Life from children and young people who are disabled or have long-term conditions

fSDC and LTCAS (Long Term Conditions Alliance Scotland) commissioned a survey of children and young people who are disabled or have long-term conditions. The study looked at the young people’s lives, attitudes and experiences, for example about schools, health and well-being, friendships, being listened to (or not) and their future aspirations.

“[I would like to] have friends and go out at night [but I] don’t have friends.”

A total of 91 questionnaires, from young people aged 5 to 19, were returned.

The young people said a lot of good things abut their parents. Over two thirds felt they were treated fairly at home and over half usually felt their parents always or usually had enough time for them. Many young people would like to have more friends and be more included in social and sporting activities. Just under a third had never or seldom spent time with friends in the past week, and a quarter said they seldom or never had fun with friends.

“I would like help to socialize in clubs after school but there is not the support to enable me to do this.”

Some felt that professionals often don’t listen to them properly, and reported problems with how their personal and medical care needs were met at school. Overall, though, the young people enjoyed being at school and said teachers were helpful. The young people had low expectations of achieving academic qualifications and the type of jobs they might get.

“Because I can’t talk, some people at school just made up what they thought I was saying… A lot of people just ignored me like some of the therapists and nurses.“

The results were compared with findings from a large scale European study of (mainly non-disabled) young people and another survey of young people in Scotland by Youthlink. This showed more negative results for our sample on various dimensions.

• 6 page briefing about the study (PDF, 730kb)
• full report (PDF, 834kb)