Any 18-year-old with a long-term illness already has multiple challenges to deal with and an upheaval in healthcare can be one too many.
This is the age at which young people generally leave the familiar staff and surroundings of a hospital they have been attending for as long as they can remember, to move into the adult system. Research shows some young people lose contact with healthcare professionals and their medical condition deteriorates as a result.
Teenagers with, say, type 1 diabetes, or cystic fibrosis or a congenital heart condition, may not be prepared for the shift of responsibility from parents to themselves for managing their illness and keeping appointments.
The need for better support was identified during a three-year study of transition from child to adult healthcare services, led by Prof Imelda Coyne of the school of nursing and midwifery at Trinity College Dublin. As a result, a new online resource, steppingup.ie, is being launched in Dublin today by international hockey player Alan Sothern, who has type 1 diabetes.
Bevin Murphy (19) from Lucan, Co Dublin, was among those who helped develop material for the website. Now studying health and society in DCU, she recalls how the first night she spent in the cystic fibrosis unit of St Vincent’s Hospital, Dublin, she cried when her parents were leaving.
“I just didn’t want to be there – I wanted to go home. I was not normally like that,” says Murphy, who had been in and out of a hospital bed all her life. But up to then it had always been in the care of Our Lady’s Children’s Hospital in Crumlin.
On that particular November night last year, she was in unfamiliar surroundings, being attended to by staff she didn't know, because she had just made the transition from child to adult healthcare.
A few days earlier, when she had attended her first outpatient clinic at St Vincent’s, she was told they wanted to admit her because she had an infection. A bed was found for her four days later.
“Now it’s not a big deal but, at the time, it was a major deal,” Murphy says of the transition. “Looking back I wish they didn’t take me in the first time – but it did throw me in at the deep end and I did get to know everybody straight away. I think the first admission, regardless, was going to be like that.”
Darren O’Toole also recalls a rather abrupt end to his visits to the outpatient clinic at Our Lady’s Children’s Hospital in Crumlin, which he had been attending every three months for as long as he could remember, having been diagnosed with type 1 diabetes at the age of five. The staff there was “like a second family” to him.
Then at one appointment he was told the next would be his last in Crumlin and that during it he would be meeting the nurse and doctor who would be caring for him in St James's Hospital.
Meeting them was one thing – but finding them the first time he walked into St James's proved to be more challenging.
“It is like your first day at school; I didn’t know where I was going. You are taken aback and it is all new surroundings,” says O’Toole (23) from Leixlip, Co Kildare.
He also had to get used to how the health professionals were asking him the questions, instead of directing them at his mother, who accompanied him on that first visit.
When Coyne started the study into the transfer of teenagers into adult services, she could not find any policy or guidance on how this changeover should be handled.
"We wanted to identify factors which would make the transition smooth and those which were hindering it," she says. Researchers interviewed young people with long-term illnesses, their parents and health professionals.
Sense of loss
They found that the transition is so abrupt, young people can become disengaged. They often feel a great sense of loss at leaving behind doctors and nurses they may have known all their lives.
“They stop managing their illness because they don’t feel linked in with the adult service,” she says.
“Some of them had not developed the skills in self-caring and self-advocacy; they felt a little bit lost.”
Parents also talked about how, after years of close involvement with their child’s healthcare, they struggled to adjust to being sidelined – or even being asked to leave the room during a consultation.
Now that the website for young people is up and running, Coyne aims to produce guidelines for health professionals that could be implemented across the services - and make this particular milestone in coping with long-term illness that bit easier and safer.