The Palliative Journey
Click the buttons below to learn more about the Palliative Journey
3. Transition Care
5. Bereavement
1. Diagnosis and Prognosis
4. End-of-Life Care
2. Caring and Support
Caring and Support
There are many different settings and forms of care where a child or young person may receive care. Click the button below to view more information
Caring for a child or young person with a long term condition can leave parents with a numerous questions that often do not have straight or simple answers. Depending on your child’s illness, their age and their life expectancy, the options and decisions to be made by parents and the child can vary hugely.
The death of a child can profoundly impact a wide circle of people, both directly and indirectly. Grief ripples through the family (parents, siblings, grandparents and extended family), social circles, and community, affecting people in different ways based on their relationship and connection with the child.
Bereavement
The death of a child can place great stress on the family system. Caring for their other children may feel overwhelming when a parent or carer is consumed by grief. But you are not alone. Click the link button below to view bereavement resources and services
End-of-Life Care
Enjoy things like celebrating the small milestones like a weekly or monthly birthday if your child is very young.
Experience has shown that preparing for your child’s death in advance of it happening can help in the bereavement process. It’s an incredibly hard and difficult time for you and your family and tough to come to terms with what is happening. For you as parents, the grieving process begins at the time of your child’s diagnosis with “Anticipatory Grief” this exists throughout the child illness right up to end of life, death and thereafter
Try where possible to maintain a balance between caring for your child and your families’ daily life. There will be difficult but important decisions to be made.
As parents you will be supported in your choice and decision around where you would like to care for your child. Consider all your options carefully and think of what will work best for you and your family.
Transition Care
Advances in medicine and modern treatments mean that many children who are born with, or develop a life-limiting condition can expect to live into adulthood. Transition Care deals with the movement of young people from paediatric to adult services. This part of the website aims to inform parents and young people about this move. Transition to adult services can be challenging in a number of ways;
- Young people with life-limiting conditions may have complex healthcare needs and require input from many healthcare teams and healthcare services.
- Transition is a big change with a need to develop new relationships with adult health services.
- Young people and their families need to know what services are available in the ‘adult world’ as these are often very different to what they have been used to with children’s services. Some paediatric services may not have an adult service version.
- It takes time to plan and prepare for such a big change.
Click the button to learn more:
Diagnosis and Prognosis
Receiving the news that your child has a life-limiting condition can be overwhelming.
It can be difficult to take in the information that you have been given and it takes time to come to terms with the devastation that this news brings. With advances in imaging (e.g. ultrasound, MRI) and genetic testing, more families are receiving the news of a potentially life-limiting condition antenatally (before your baby is born). Parents often have to deal with the sadness regarding the diagnosis in the here and now, but also the sadness at the possibility that their child may not have the life that they had imagined for them.
The Palliative Journey
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Created on March 10, 2026
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Transcript
The Palliative Journey
Click the buttons below to learn more about the Palliative Journey
3. Transition Care
5. Bereavement
1. Diagnosis and Prognosis
4. End-of-Life Care
2. Caring and Support
Caring and Support
There are many different settings and forms of care where a child or young person may receive care. Click the button below to view more information
Caring for a child or young person with a long term condition can leave parents with a numerous questions that often do not have straight or simple answers. Depending on your child’s illness, their age and their life expectancy, the options and decisions to be made by parents and the child can vary hugely.
The death of a child can profoundly impact a wide circle of people, both directly and indirectly. Grief ripples through the family (parents, siblings, grandparents and extended family), social circles, and community, affecting people in different ways based on their relationship and connection with the child.
Bereavement
The death of a child can place great stress on the family system. Caring for their other children may feel overwhelming when a parent or carer is consumed by grief. But you are not alone. Click the link button below to view bereavement resources and services
End-of-Life Care
Enjoy things like celebrating the small milestones like a weekly or monthly birthday if your child is very young.
Experience has shown that preparing for your child’s death in advance of it happening can help in the bereavement process. It’s an incredibly hard and difficult time for you and your family and tough to come to terms with what is happening. For you as parents, the grieving process begins at the time of your child’s diagnosis with “Anticipatory Grief” this exists throughout the child illness right up to end of life, death and thereafter
Try where possible to maintain a balance between caring for your child and your families’ daily life. There will be difficult but important decisions to be made.
As parents you will be supported in your choice and decision around where you would like to care for your child. Consider all your options carefully and think of what will work best for you and your family.
Transition Care
Advances in medicine and modern treatments mean that many children who are born with, or develop a life-limiting condition can expect to live into adulthood. Transition Care deals with the movement of young people from paediatric to adult services. This part of the website aims to inform parents and young people about this move. Transition to adult services can be challenging in a number of ways;
Click the button to learn more:
Diagnosis and Prognosis
Receiving the news that your child has a life-limiting condition can be overwhelming.
It can be difficult to take in the information that you have been given and it takes time to come to terms with the devastation that this news brings. With advances in imaging (e.g. ultrasound, MRI) and genetic testing, more families are receiving the news of a potentially life-limiting condition antenatally (before your baby is born). Parents often have to deal with the sadness regarding the diagnosis in the here and now, but also the sadness at the possibility that their child may not have the life that they had imagined for them.