Prof. Jane Noyes – Bangor University
Around 49,000 children aged 0–18 years in the UK are living with a life‐limiting or life‐threatening condition and around 13,000 are in the 18–25 age group.
In the UK, planning for transition services can start at around age 14 years and continues up until transfer between the ages of 16–18 years. This age group are referred to as young people rather than children, although they are managed within children’s services. Children’s services are generally commissioned for age 0–18 years and adult services beyond 18 years.
Despite two decades of research and initiatives to improve the quality of the service, young people with life-limiting and life-threatening conditions still find transition unsatisfactory – and we still do not fully understand what the differences between children’s and adult palliative care services are that create difficulties for young people.
The aim of this study was to explore these differences, difficulties and experiences of young people and their families during the transition in more depth by re-analysing data already collected in previous studies. A secondary aim was to develop a transition palliative end of life care model.
The research team, led by NCPHWR researcher Jane Noyes, Bangor University, studied 77 qualitative interviews with children and young people, parents, siblings, and professionals. These interviews were rich in information as they allowed those being questioned to have time to expand accounts of their experiences and feelings.
Childhood experiences of care and services shape expectations of adult services. The conflicting realities experienced in children’s and adult services help explain why young people and their parents experience a gulf between the two services.
The study identified six areas where conflicting realities existed that help explain the confusion, anger, and alienation that young people and their parents experienced:
1. From the perspective of the young person and their family, the service provision associated with children’s palliative care was a much better “fit” when they were planning to live at the same time as planning to die. Adult models of palliative care and services offered were felt to focus more on supporting end of life care.
Experiences of being the oldest and one of many with the condition in children’s services and then being the youngest and one of few with the condition in adult services. Young people usually reached the end of their eligibility to be accommodated within children’s health services by their 18th birthday, by which time they were generally being treated as adults and were the oldest “patients” in children’s services. When they moved to adult services, they automatically became by far the youngest “patients,” and frequently felt as if they were treated like children again.
It was commonly reported that involvement within decision‐making and self‐advocacy was not an embedded, core principle underpinning their care within adult healthcare services.
Healthcare professionals were described as failing to recognize the young person as a “whole person” – inevitably, the lack of an individualized service resulted in a generalized care plan that fell short of fulfilling the unique needs of the individual.
2. For young people with complex health and palliative needs and learning impairments, parents experienced their son/daughter remaining in a childlike state, but having to cope with legislation that classified them as adults, and professionals who were not equipped to communicate with their son/daughter.
3. There were inconsistencies between children’s and adult eligibility criteria for continuing care funding. The unpredictability of illnesses often resulted in young people not meeting the adult continuing healthcare criteria because they were stable for some of the time. This meant that specialized continuing care provision that they had been received within children’s services was reduced or completely discontinued following transfer to adult services.
Staff and training:
4. Differing experiences of communication and person‐centred care between children’s and adult services and the need for additional training to ensure that all professionals are competent to communicate with and care for these young people can be addressed with targeted interventions.
5. Differences and problems occurred in being treated by experienced children’s healthcare professionals within specialist children’s services compared with being treated by relatively inexperienced adult healthcare professionals within more generalist adult services.
New Palliative Care Model
The researcher team recommend a new palliative care model to support the child to adult transition. The core elements of the model included continuity of:
- Health promotion
- Pain and symptom management
- Skilled communication and joint decision making
- Family-centred care
- Key working to help families and young people negotiate multiple services
- Condition-specific planning and care pathways
- Advanced care and access to holistic support
- Multiagency care
- Psychological support
- Short breaks and respite care
- End of life care planning and provision
- Bereavement support for the family.
The team believe that this model can be achieved in practice by commissioning specific 16–25 year transition services, greater engagement with relevant not‐for‐profit support groups, and using digital technologies and social media to create communities of support for young people with rare conditions in adult services.
The team hope that the findings and recommendations from their study will provide new insights and guidance that can be utilised to bring about changes in practice, help target care more effectively and ultimately lead to significantly better service and quality of life for patients and their families. For further information and details on the research visit: https://www.ncbi.nlm.nih.gov/pubmed/30047155