EXTRA support is needed to help the families of young people with life-limiting conditions adapt to a future they were not expected to have, a report has found.
Thanks to medical advances, more people diagnosed with serious illnesses in childhood are surviving through adolescence and into adulthood.
However, research carried out for the Children’s Hospice Association Scotland (Chas) found the parents of young patients are often unprepared for their futures and can suffer trauma when asked to “let go” when they are adults.
The charity, which provides palliative care and respite services at specialist centres in Balloch, West Dunbartonshire, and Kinross, near Perth, says families need training and ongoing support as their children age.
It is also calling for improved services for patients as they outgrow children’s hospices.
The research, by Dundee and Nottingham universities, focused on young people aged 15-25 also found the aspirations of young adults for education, employment, independent living or relationships are often considered “unsafe or unrealistic” by family members.
Libby Gold, associate nurse director of care at Chas, told The National: “Those of us who work with these young people know that these are the difficulties that they face.
“This is the evidence. This is to day, ‘come on everyone, wake up, we need to help them’.”
Professor Divya Jindal-Snape, of the University of Dundee, said: “Over recent years there has been an increasing awareness and emphasis on the needs of young adults with life-limiting conditions. Much of this has been due to the fact that many children are surviving longer with conditions that were previously unique to childhood.
“To ensure the well-being of the young adults, their families and the professionals working with them, it is important to understand the needs of all concerned and to provide them with ongoing support.”
The report found patients’ clinical conditions impacted upon their aspirations and future plans, stating: “The life issues for young adults with life-limiting conditions in the global context of being a ‘young adult’ were to some extent quite similar to those of other young adults, with tensions between young adults seeking independence and families having difficulty in ‘letting go’.
“However, the difference was that this difficulty in letting go and the view from adults that they were ‘child-like’ and naïve had emerged due to their medical conditions and the resulting protected environment they had grown up in.
“Other differences were also evident, such as socialisation being mainly limited to adults in caring roles.”
Caring for younger relatives was found to have a “significant impact” on parents and siblings, creating a barrier to employment and a social life.
Families also cited concerns about the decision by Chas to limit its services to the under-21s.
A transition team was appointed in January as the charity seeks to focus on the needs of children and teenagers.
Gold added: “We also felt we were holding the young people back because it’s not right for them to be in this environment where they are seeing children and other young people dying when they are holding their own and should be getting on with life.
“These young people are going through lots of different transitions and they have to be prepared for them.
“Those of us who are hoping for a long life know we will leave primary school, start high school and then go on to university or employment. They were just never sure that was going to happen.
“Understandably, they weren’t prepared. For some parents it’s really difficult.
“It’s not as if they have seen their child go through different phases to become more independent and be able to make decisions.
“For these young people, they have been cosseted, they haven’t even been allowed to make any decisions, so when they start to ask to do something that is out of the ordinary for them, their parents find it traumatic.”
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