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Handbook for young adults in palliative care

Educational institution : The Hague University of Applied Sciences
Client : NIK (Network Integral Child Care)


In the Netherlands, palliative care is divided into palliative care for adults and palliative care for children. The children who are 18 years old are transferred from pediatric palliative care to palliative care for adults. There are major differences between care for children and adults. In addition, the clinical pictures in pediatric palliative care are often complex and rare. This means that specialist care must be deployed for this, but that is often not available everywhere. It is also the case that child care is organized and financed differently.

Research question

The study 'Incurably ill and then you turn 18' shows that care in the hospital and outside is subject to many changes when a young person turns 18. The patient is then suddenly seen as an adult and addressed, while the development of seriously ill young people regularly lags behind that of healthy young people. In addition, young people need to be seen as their own target group and to be addressed, treated, cared for and, if possible, activated in the manner appropriate to their age (e.g. age-specific matters such as intimacy, grief, need for autonomy, developing their own identity). . For many doctors and nurses it is not clear what they should take into account with palliative young people and how they should deal with parents in this regard.

The question posed by NIK Holland Rijnland is: How does the target group of palliative young people (18-23 years) differ from palliative children and palliative adults in terms of developmental and pedagogical aspects and what should doctors and nurses take into account?

The assignment

Develop a practical tool that doctors and nurses in the hospital can use as a guideline in the care of palliative youth.

End product

Based on the request for help we received from the NIK (Netwerk Integrale Kindzorg), we have devised a practical tool that can be used in the hospital. We have developed this practical tool in the form of a handbook. Through this handbook we want to provide tools that can be used within adult palliative care. We also use a kind of signpost to indicate what you as a doctor/nurse should take into account when dealing with young adults. In addition, we have developed an introductory sheet that young adults can fill out. The introductory sheet contains general information, but also his or her needs, hobbies and interests can be filled in. This is added to the file and serves as a handle for the doctors and nurses who meet the young adult. They can read in and that way they know who they are dealing with and the young adult feels seen and heard. This also contributes to the sense of involvement between the caregiver and the young adult.


We would therefore like to advise that the palliative care department for adults should have a team consisting of a number of 'personal supervisors' who can guide the young adults in this department in their process. As a permanent care provider, you build up a pedagogical bond with the patient. You will be better able to pick up signals from the patient than when there are changing care providers. The young adults need a fixed face, someone who knows him/her, to whom they can tell their story, but there is also a need for someone who informs the parents of the circumstances that occur in the hospital.

We advise in the long term.

  • A separate department for young adults in palliative care. Organize intervisions within the team, where the personal supervisor of the young adult is present
  • An office for the personal assistants, where they can welcome their clients and where they can have conversations.
  • Offer courses to doctors and nurses, so that they are also trained to a small extent in the field of pedagogical aspects that occur within the palliative care of young adults.
  • Creating an environment for this target group; chill-out corner, dining area, space for, for example: Playstation, games, TV, magazines/books, etc. (youth lounge)
  • Activity leader who undertakes activities with the young people


  • Preparing the young adult for the transition within palliative child care
  • Organize peer meetings, so that young people can also share their experiences with each other.
  • Purchasing literature books aimed at the target group (arranging a bookcase)