How does a hospice social worker support families?

I’ve been at St Barnabas House for five years, although I’ve worked as a social worker for over twenty years. Working in a hospice, it is my job to provide emotional and psychological support to patients and their families, both before and after bereavement. The way we do this is as varied and individual as the people we support.

Sadly, one of the main changes I’ve seen since joining St Barnabas is a marked increase in younger patients. When I joined, if we had a patient in their mid-50s, that seemed very young. Now, it’s not unusual to see people in their 40s or even their 30s. You can imagine how difficult it is for a parent of young children to be facing a life-limiting condition. How do they explain the enormity of the situation in an age-appropriate way, while dealing with their own symptoms and emotions? It can be daunting to know what terminology to use. This is where we can help. We can help support the children, using different materials and activities. Often, we talk about loss and change being a natural part of life, just like the changing of the seasons.

With older children, we collaborate with schools and other involved agencies to ensure everyone is working together to support the child.

You can read our blog about talking to children about grief and bereavement to find out some tips and advice about this.

Challenges of a hospice social worker

As social workers, we work mainly in the community – visiting people in their homes – but we also care for patients and their loved ones on the Inpatient Unit here at the hospice. We also run a Living Well session and deliver training. We all bring our own particular skill sets and experience to the team. I qualified when I was 40, after raising my family, and started in child protection before moving into fostering. In that role, I supported the children but also provided support to foster carers looking after children who had experienced loss, trauma, abuse and change in their lives.

At St Barnabas, we’ve noticed a change in the support we’re being asked to provide. Some of that may be due to a lack of resources available in the community, such as mental health support. It sometimes feels that we are filling the gaps because people don’t have anywhere else to turn.

We’re here for the family in a very holistic way, so we can also provide general advice and support. That can be as diverse as helping with housing, going into schools and helping facilitate difficult conversations.

Hospice social worker responsibilities 

The families we work with are experiencing the most challenging times of their lives. Serious illness affects relationships and the dynamics within a family because we all deal with pressure and stress very differently.

Sometimes, we step into the role of mediator when families are having difficulty communicating. It can be helpful to have a non-judgemental person there, someone who is not emotionally involved in the situation. Hopefully I can ask the right questions to enable everyone’s voice to be heard. It’s very much about helping them hear each other’s point of view.

One family has always stuck with me. I was supporting the mum, who was under the hospice’s care. I did ‘walk and talks’ with her husband and daughter but the son, who was a teenager at the time, didn’t want to talk. I told the parents that he might change his mind if I became a regular visitor. Over time, we built a good rapport, and he was able to engage with me. Sometimes, the longevity of a relationship is important to gain that trust.

Living with grief 

Families can contact us when they need our help, no matter when their loved one died. Grief is not a linear journey and sometimes a life event will trigger a resurgence in those feelings. That could be something like a milestone birthday, a wedding or the birth of a baby. I recently supported a young girl whose mother died here when she was a teenager. A few years later, her college contacted me to say she was struggling. She felt that she had thrown herself into her studies and hadn’t really grieved properly or acknowledged what she’d been through. We had four or five sessions, and she visited the hospice, which was a massive thing for her. That may be the limit of my involvement with her, but she can call whenever she needs support.

The most rewarding thing about my role is the relationships we build and the feeling that you are making a difference, however small. Of course, the emotional intensity of the work can be challenging, and you need to be aware of your own triggers. You need to make sure you have your own strategies – for me, that’s swimming, walking, and making use of my supervision with colleagues.

In some ways our job is about offering hope. It’s not about getting better, or how long their life will be, it’s about living with the illness as opposed to dying from it. It’s helping people focus on making memories with their families and providing a space for them to share their concerns, worries and fears.