A Family Companion’ is designed for parents and carers of babies, children and young people with a life-limiting condition or illness.

This resource aims to prepare you for the situations and challenges you may face with regards to your child’s illness.

The information seeks to support parents and carers in their role as champions and decision-makers for their child, with each section exploring stages of your child’s illness and what you might expect.

The resource is also helpful for extended family members, close friends and your support network to read and understand the difficult issues that may arise after the diagnosis or recognition that your child has a life-limiting illness.



2. How do I get more information?

4. What are my rights?

Diagnosis or Recognition

6. What is palliative care?

7. Who provides palliative care?

7. Your family

8. what are the treatment choices?

8. What are your goals of care?

Ongoing Care

10. Where can my child be cared for?

12. Care plan

13. Symptom management

15. Family considerations and concerns

19. Family, friends and our community

End of life and bereavement

22. What are our end-of-life choices?

24. How do we talk to our children?

26. What can we do about memory making?

27. Does it help to do some funeral planning?

27. How do I know when the last hours or days are near?

28. What do I do after my child dies?

30. How will I respond?

32. How do I get bereavement support?

33. How do I readjust to my changed life?

Other Organisations and Support

35. Parents

36. Children