A new report has called for improved training and ongoing support for young adults living with life-limiting conditions and their families.
The report was commissioned by Children’s Hospice Scotland and put together by academics from the Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care at The University of Nottingham.
Academics examined a range of unique cases of young adults with life-limiting conditions, interviewing them, their families as well as health and social care staff.
The report found that the medical conditions of the young adults impacted on other aspects of their lives, such as aspirations and plans for the future, including education, employments and relationships.
It concluded that training and ongoing support should be available for families and professionals to help meet the transition needs as young people move from childhood through adolescence and into adulthood.
“On the whole there was an uncertainty about the future and limited planning as parents and professionals had not expected some of the young adults to survive beyond childhood.”
-Professor Bridget Johnston, from The University of Nottingham
Professor Bridget Johnston, from The University of Nottingham also added; “This is entirely understandable but it does point to challenges for the future and how their needs are best met.”
The research highlighted the multiple transitions as well as those experienced by their families and professionals.
To ensure the well-being of the young adults, their families and the professionals working with them, the report found that it is important to understand the needs of all concerned and to provide them with ongoing support.
Libby Gold, Associate Nurse Director for Care at CHAS, said: “As a charity directly caring for young adults with life-limiting conditions, we welcome the findings of this report. ”
“Perhaps most concerning, is the uncertainty faced by young adults who have surpassed their life expectancy and want to explore their full potential, be it in a professional or personal context, like anyone else their age.”
