Lizzie Chambers, Development Director, Together for Short Lives, UK, rolled up her sleeves to volunteer in the home of a family caring for a child with a life-limiting condition. Lizzie explains how her organisation has developed the Family Support Volunteering project and the free tools you can access to help you set up your own service.
As professionals working in children’s palliative care, we all know the enormous stress that parents are under, not only in providing 24-hour complex care to their sick child, but also in keeping up with normal everyday chores – housework, ironing, gardening, shopping, supporting siblings with homework or play activities. And that’s without even contemplating the emotional strain and loneliness that often comes with having a very sick child. In this post, I will explain how we went about developing a special kind of volunteering to support families and how you can make use of our free online resources.
Over the past two years I have had the privilege of making a real connection with some of these families caring for a child with a life-limiting condition, by volunteering with them in their own home. It’s been an experience that has helped to deepen my understanding of the obstacles faced by families caring for a seriously ill child – even the minor, everyday ones – and hopefully my support has helped them overcome some of them.
This model of volunteering, called Family Support Volunteering (FSV), has been piloted and championed by the organisation I am a part of – Together for Short Lives, the UK charity for children’s palliative care.
Pilot sites included a children’s hospice, a social care charity for children with life-limiting illness and three community children’s palliative care teams. Through these diverse sites we were really looking to test how the FSV model could be embedded and potentially replicated within a range of different settings.
And it worked! The pilot organisations told us that using volunteers in this way to help families directly had enabled them to extend the range of support they could offer and had increased their organisational capacity. They felt that volunteers had enriched their organisations and brought new ideas and impetus to their cause.
Just as importantly, families themselves told us that they had benefited greatly from having volunteers support them in their home. One family told us:
“It has meant we can concentrate on what’s important to us as a family and have family time instead of doing chores or stressing about the amount we have to do.”
For my own part, I was visiting a family to help them with housework every week. It may not sound like much, but the mum told me that I was doing jobs that she’d just not been able to get to and how much peace of mind it gave her to know that her rooms were getting cleared out from top to bottom. With so much weighing on her mind already, I was delighted to be able to ease the load in any way I could, and for her clear cupboards and clean rooms were the key!
Our early evaluation of the pilot shows that there is huge merit in the family support volunteering approach, for families, volunteers and for organisations alike.
Together, we truly can make a difference for children and families – we’ve developed a comprehensive set of online resources, Together We Can, to provide everything that an organisation might need to set up their own Family Support Volunteering Service, including a comprehensive set of training modules for volunteers.
Available to download, free of charge, from Together for Short Lives’ website.
Links and resources
- Together for Short Lives.
- Download the free online resources, Together We Can.
- Contact Lizzie Chambers by email.
- European Association for Palliative Care Paediatric Task Force.
- Read more posts about children’s palliative care on the EAPC Blog.