Hospice care for children and young people

Palliative care for children and young people is about promoting the best possible quality of life and care for those with a life-limiting or life-threatening condition, and their families.

It includes looking after the physical, emotional, social, educational and spiritual needs of children and their families, by managing symptoms, providing short breaks,  end of life care and bereavement support.

It usually involves a team of different specialist staff providing different types of support to the whole family/carers, including siblings and grandparents.

It can be given from birth if the child needs it, or as their condition worsens. The care you receive is based on the unique needs of your child and family.

Children’s palliative care can be provided in a hospice, a hospital, at home, or in other community settings.

There are hospices especially dedicated to children and young adults, while some hospices care for all ages.

While the hospice provides expert, tailored care, with access to specialist facilities, many families prefer to receive all or part of their care in their own homes. Community-based services, working alongside other health and care providers can support families at home.

Therapies are central to hospice care for children and young people.

They are about developing and improving a child’s function but also about having fun and taking part in a range of age appropriate experiences. People and services involved in your child’s care can include:

• Bereavement counsellors can support a child before and after someone close to them dies, such as a sibling, giving them a chance to think and talk about their feelings.
• Children and family therapists support the children and family of someone with a terminal illness in their day-today life through to bereavement. They can offer counselling and practical help, and speak to schools and carers to help them understand what the family is experiencing.
• >Children’s palliative care doctors, also called paediatric palliative care doctors, are specialist doctors who will work with other members of your child’s care team and make decisions about treatment.
• Nurses can help with symptom management and end of life care. Nursing care can sometimes be provided at home by community children's nurses and other nurse specialists.
• Play specialists provide play activities for children and young people to help develop their physical, social and communication skills. They can also provide activities to help children and young people manage difficult experiences, like the death of a loved one, or if a family member is seriously ill.
• Youth workers support young people who are receiving palliative care
• Social workers can help families with practical issues, like speaking to schools, helping with paperwork, and sometimes counselling.
• Therapists providing physiotherapy, complementary therapies like baby massage and nutritional therapy, art and music therapy

As well as the support mentioned above, children’s hospices can provide these services:

• Specialist support groups such as teenage cancer groups, and groups for siblings.
• Toy loan services allowing families to  borrow games, toys and sensory equipment
• Specialist short break care for families, also known as respite care
• Transitioning into adult services, which support young people with activities either in the community or in the hospice as they move to adult palliative care. This is usually available for young people aged approximately between 13 and  25 years.

• Together for Short Lives is the national charity for children with serious and life-limiting conditions and their families. Their website has lots of advice for parents and carers. The charity has also developed a charter with information about what you can expect from children’s palliative care services