Paediatric Palliative Care Family Support volunteers provide emotional and practical support to patients and their families. This includes playing with the patient and/or siblings, helping with light practical chores, providing a listening ear or helping at appointments or shopping.
In reality the help is often multi-faceted and can be as individual as the personalities of the patient, family members and volunteer.
Each volunteer provides their unique gifts and finds their particular niche within the family. The long-term nature of this role is where the real magic happens. A trusting relationship evolves because the volunteer visits weekly and over a long period of time. It is in the more subtle gifts of uplifting, supporting, listening, reinforcing, encouraging, providing a fresh outlook, and just their presence through the ups and downs of life that the real benefits of the program are realised.
All volunteers at the Sydney Children’s Hospital Network undergo training, it’s quite intensive and covers two full days and topics including: paediatric palliative care, the role of a volunteer, communication, grief and bereavement, diversity, symptoms and supports, boundaries and self-care.
Further mandatory training modules are also completed on-line including child protection, Aboriginal health, and Work Health and Safety.
A volunteer’s perspective from Tony…
I was already doing some volunteer roles involving adults but was looking for something to do with children.
Although I was a retired teacher, my motivation for a role with children was more around a previous experience I had of a grandchild’s admission to The Children’s Hospital at Westmead.
At about that time, I saw a front-page story in the local paper about a need for palliative care community volunteers and so it came along at the right time for me.
It was a way to satisfy that niche area that fitted in with me and was actually better in that it didn’t involve a long drive to a hospital – it was in my own community that I could help out.
Walking into their home wasn’t too daunting – I had roles in homes before. Sitting down and being present with the family was important – letting them work out what to do with me.
I was happy to do whatever they wanted. After a while they recognised that I was happy to accept them and help out in whatever ways worked for them. They saw that I could be relied upon, that I was empathetic, and a trust was developed with the siblings. Earning that trust took a while which is fair enough and as time went on it, allowed me to do a little more.
The family don’t ask me for anything that I’m not comfortable with. We manage boundaries and they don’t ask me outside of my visit day. I’m appreciative of that.
I have a good relationship with the family in circumstances that are tough for them. To be there for special times like first days at school, having cake on a birthday visit is really special. I’ve been able to provide opportunities for the siblings to go to the beach and movies using ‘Dine and Discover’ vouchers that otherwise wouldn’t have been used.
The role has made me a better person. I’ve learned about different personalities, and I’ve grown from it. I’ve observed my own reaction to things and learned about difficulties in people’s lives and what it is like being in the health system. Those insights have helped me as a person and even given me self-reflection about my teaching years.
A mother’s perspective from Jayde…
When we were first approached about the Palliative Care Volunteer Program we were unsure and hesitant.
But now I think to myself – “Why were we so worried?” It has changed our lives for the better!
We have benefited from the program in so many ways. Our volunteer Tony came into our lives in 2019 to help Jayson and I not feel so guilty for not being able to spend quality time with our daughters while we support our son Levi who lives with a rare genetic disease called Pelizaeus Merzbacher.
Tony plays games with our girls and takes them out, and that’s just to name a little bit of the adventures they do!
Our girl’s see Tony as a grandfather figure. Tony has helped our little family in so many ways, we couldn’t thank him enough!
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