Reflecting on the support we provide families in difficult times

If I mention the role ‘Family Support Worker’ what would you imagine this role to entail?

Would it be outings with children, delivering arts and crafts or activities, and holding group events? Listening to a child’s worries, hearing one of their many funny stories, wiping away their tears or laughing at their silly jokes?

You may also think about us providing practical support for parents, such as cleaning, shopping and giving emotional support to family members. Whatever is in the realm of our control, we think of the small things that can make an impact each day.

All of the above is correct. At Rainbow Trust Children’s Charity, Family Support Workers do all of those activities. However, there are other ways in which we support families, ways that many don’t like to think about because it’s our greatest fear, especially as parents.

Rainbow Trust’s Family Support Workers are invited into the life of a family during their worst times. We witness the raw emotions of mothers, fathers, sisters, brothers, grandparents, aunts, uncles, nieces, nephews, cousins and friends as they endure the process of a child they love dying. We listen and we comfort.

We encourage parents to discuss the most difficult conversations; where they want their child to die - at home, at the hospital or at a hospice - who do they want to be present and whether they will donate their child’s organs.

An older child, possibly in their teenage years, may work with their Family Support Worker to plan what they would like following their death; where will their funeral be held, what clothing will people wear, where will their ashes be scattered, and they might leave messages to pass on to their family after they have died.

We may also be present when the child dies, as Rainbow Trust has a 24-hour helpline. This means that a family can contact us to ask us to come and be with them outside of usual working hours if their child is dying.

A Family Support Worker may be present to offer support to siblings and keep them engaged in activities, or give them their dinner whilst the parents are with the sick child. We might hold the sick child in our arms - both before and after death -, sing to them, read them a story, dress them or take hand and footprints as precious memories for parents.

Family Support Workers can liaise with other charities that can offer support to the family. For example, a cold cot may be needed to allow the child to remain at home before the funeral, or financial support may be requested. Registering the death and planning a funeral are also tasks that we help with by selecting photos, choosing a funeral home, writing a eulogy and ensuring siblings understand the meaning of death and what this now means for their family.

We attend the funerals of children we have offered support to and may even have a role on the day of the funeral, reading a poem or supporting a sibling (being prepared to leave with them if they become too upset). We have a range of activities we can keep in the car in case they become overwhelmed at the service.

After a bereavement, Rainbow Trust continues to support the family. We listen with tears and with laughter as parents share the memories of their child. We share our own memories and as we talk about them, we say their name, we acknowledge their time in this world, the impact they made and how loved they were.

The role of a Family Support Worker is so varied. Sometimes the days are great fun, and we laugh a lot, but other days can be challenging. Either way, we will be there and each day is a privilege.

If you would like to sponsor a Family Support Worker to help them continue to provide vital support to families caring for a seriously ill child, please click here.