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Research helps health staff caring for seriously ill young adults

Posted on 4 October 2013

Research carried out by the University of York has highlighted ways in which health and care staff working with young adults with life-limiting or life-threatening illnesses can improve their care.

The STEPP Project - Making a Difference for Young Adult Patients, was led by a research team from the University’s Social Policy Research Unit. The team produced a set of practice prompts as well as a research briefing designed for use by health and care staff in hospitals, hospices and specialist clinics to help young people and their parents as they progress into adult care.

The research was commissioned by the Transition Partnership, a collaboration between the University and charities Together for Short Lives, The National Council for Palliative Care (NCPC) and Help the Hospices.

Lizzie Chambers, Development Director at Together for Short Lives said the Transition Partnership had commissioned the research to establish evidence about how adult practitioners could better support young adults in their care. 

“We are delighted that the study has uncovered so many positive examples of how the experiences of young adults can be improved and urge all health professionals to consider how they themselves could make these ‘tweaks to practice’ that would make such a difference to young people.”

Professor Bryony Beresford who led the University research team said:

“What is clear from our findings is that small changes in practice can make a big difference to young adults’ experiences. Many of the changes don’t cost anything, they just require a slight change in approach or emphasis but they have the potential to make a real difference.”

What is clear from our findings is that small changes in practice can make a big difference to young adults’ experiences.

Professor Bryony Beresford

The practice prompts are set out in a series of laminated cards designed for easy reference by staff. The cards highlight the issues and provide advice on how they can be addressed.

Professor Beresford said: “It might be something as simple as helping a young person to access the Internet or more challenging issues such as delivering bad news. In many cases, the suggested approaches don’t involve major infrastructure investment. Often it’s about how health and care staff communicate with young adults and their families.”

The guidance is based on a series of interviews with young patients, their parents and staff in hospitals, hospices and specialist clinics across England. The research team is holding a UK-wide series of free workshops for health and care staff to explain the guidance, including an event at the University of York on Friday 4 October.

Advances in medical care mean that adult health services are dealing with increasing numbers of young adults who, in the past, would not have survived childhood.  There are currently around 49,000 young people aged 19 or under living with a life-limiting or life-threatening condition.

The research revealed that one of the key issues for young adults is support from health and care staff to help them plan and decide what to do if their condition deteriorates or there is a medical emergency.

Many parents wanted advice on how to talk to their child about end of life decisions and planning.  One parent told the researchers: “I don’t know how to prepare her for when she gets worse...No-one’s spoke to me about it. You know the inevitable is going to happen, but no-one talks to you about it.”

Some young adults  said they felt isolated in adult wards and many still wanted their parents involved in decisions: “The doctors on the ward come and see you and they ask you all these questions, and I just say to ‘em: ‘Can you wait ‘til my mum comes back?’ Even though I’m 19, I’m an adult...I still find it hard with some questions.” 

Professor Beresford said the resources would help busy staff on wards to address these issues sensitively and ensure the support is there for young adults and their families.

Notes to editors:

  •  Find out more about the Social Policy Research Unit at the University of York
  • The STEPP project was a three year research study funded by the Big Lottery Fund Research programme. It explored the experiences of health care transitions from the perspective of young adults who have made the transfer into adult health care, their parents and the professionals involved in their care. It sought to identify ‘patient-endorsed’ good practice and the ways of working or systems which support such practice.
  • Both the practice prompts and research briefing are available for free download from
  • Together for Short Lives is the leading UK charity for children and young people with life-threatening and life-limiting conditions and all those who support, love and care for them
  • The National Council for Palliative Care (NCPC) is the umbrella charity for those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland
  • Help the Hospices is the UK charity supporting hospices and championing hospice care
  • The Big Lottery Fund Awards lottery money to community groups and projects that improve health, education and the environment

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