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Very special care – when and where it matters most
People often think that palliative care is only for families preparing for the end of their child’s life, but in fact, it is also for children with serious illnesses and life-limiting conditions.
Palliative care offers an extra layer of support for families, helping them throughout their child’s illness. It’s about providing respite when they need it, helping to coordinate treatment and care, supporting their wishes to spend as much time at home as possible and giving them space to be together at the end of life. It’s also about providing bereavement support for parents, siblings and extended family members to ensure they continue to receive a high level of care after their child has passed away.
Across Sydney Children’s Hospitals Network the Palliative Care staff and volunteers always focus on what matters most to the entire family.
If families want to care for their child at home, palliative care volunteers play a vital role, extending the network of support beyond the hospital environment. Caring for a seriously ill child at home can be difficult and can place enormous physical and emotional strain on the whole family.
Family Support Volunteers visit families at home and help in many ways, according to the family’s needs. They may spend time doing activities with an unwell child, caring for siblings, or helping with practical tasks to give parents or carers a rest.
Volunteering in a palliative care setting is unique. It can be very rewarding and the volunteers learn to listen deeply and value life as a precious gift. It can also be emotionally demanding and the Hospital provides training and support to ensure volunteers are looked after too.