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COVID-19 Resources for SCHN Paediatric Palliative Care Families

Dear Parents & Carers,

We know this is a time of unprecedented change and that all of us are adapting to the new normal of physical distancing, home schooling and restrictions on where we can go and who we can see. We know that many of you were quick to respond to the challenges posed by COVID-19 because of the increased infection risk to your child’s health. We also know that you are very skilled at managing the high care needs of your unwell child along with the needs of their siblings and other family members.

However, we know that you are only human and that there may be days and times when you run out of ideas or feel frazzled by the whole family being home for extended periods of time. It may be difficult at times to explain to your children what this coronavirus pandemic is all about and why their routine has changed.

We know there is so much information out there and you may have already made decisions about how much information you want to read and what is helpful and what is not. We also know that many of you are in direct contact with the Paediatric Palliative Care Teams at Sydney Children’s Hospital Randwick, The Children’s Hospital Westmead and John Hunter Children’s Hospital, Newcastle as well as the team at Bear Cottage. You have probably found that they are the best source of reassurance and support as they know you and your child and can listen to the specific concerns you have at any time.

If you are looking to find some good quality information and resources, we have put together this list which has some useful links. We hope you will find this helpful.  We have divided this into 5 headings:

  1. For the Adults in the Family
  2. For the Younger children in the family
  3. For the Young people in the family
  4. Activities at Home
  5. NDIS & COVID-19

 

1. For the Adults in the Family

2. For the Younger Children in the Family

3. For the Young people in the family

4. Activities at Home

5. NDIS & Coronavirus