Report shows more can be done to support transition process for young adults with life-limiting conditions

Categories: Research.

Entitled ‘Multiple and multi-dimensional transitions: Understanding the life transitions of young adults cared for by CHAS and the impact on their parents, siblings and professionals’, the report sought to better understand the life transitions of young adults with life-limiting illnesses and their families.

It found that the young adults’ medical conditions impacted on several other areas of their life, including their plans for the future, education, employment and relationships, and concluded that more training and support should be available to families and healthcare professionals to help young people as they move into adulthood.

The report also indicated that children’s hospices may not be best suited to meet the wide variety of needs that young adults (between the ages of 15 and 25) have.

Additionally, it found that that tensions between young adults and their families were commonplace, with families often having difficulty in “letting go.”

Professor Divya Jindal-Snape of the University of Dundee said that “to ensure the wellbeing of 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 University of Nottingham’s Professor Bridget Johnston added: “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. This is entirely understandable but it does point to challenges for the future and how their needs are best met.”

Libby Gold, associate nurse director for care at CHAS, welcomed the 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,” she said.

“We are a children’s charity but we need to ensure that there is age appropriate care and support for young adults and their families where CHAS services are no longer suitable. We look forward to using the findings as a platform to raise awareness of the complexity of this important issue and in turn, further inform the work of our transition team.”

Lizzie Chambers, development director at Together for Short Lives and lead for the UK Transition Taskforce, encouraged providers of palliative care services for both children and adults to read the report and act on its recommendations.

“We know that the number of these young people is growing, yet services and support to meet their needs have not kept pace,” she said. “That’s why Together for Short Lives established a transition taskforce to overcome the barriers to good transition for young people by building and strengthening bridges between adult and children’s services.

“All commissioners and providers of care and support need to work together to ensure that these young people experience smooth and well planned transitions to adult services. And importantly there needs to be sufficient numbers of professionals with the skills, knowledge and competencies to care for young adults with complex life-limiting conditions.

“As part of this approach we are working closely with CHAS and adult hospices in Scotland to deliver a masterclass on young people’s transition for all adult palliative care professionals who deliver care and support to these young people.  But there is still much to do in order for these young people to reach their potential, access care and support which is appropriate to their age and development, and have opportunities for training, employment and leisure in Scotland and all UK countries.”

Visit the University of Dundee website for more information and to read to full report. More details about the UK Transition Taskforce are available on the Together for Short Lives website.

This article was first published on the UK edition of ehospice and is republished with permission.