Tuesday 24th June 2014
Mac Voice, the magazine for Macmillan professionals: Summer 2014
Book boxes are helping parents talk to children about cancer.
What to tell the children is not a question we are asked every day, but when we are, is it answered fully? This is something myself and colleagues, Steve Bass, Macmillan Palliative Care CNS, and Leanne Picco, Macmillan Lung Cancer CNS, felt could be handled better.
Our idea for a children’s book box grew from conversations we had with parents about how they could explain their cancer to their children. In Communicating with children when a parent is at the end of their life, Rachel Fearnley talks about the importance of sharing information with children, encouraging them to participate in something that is having a huge impact on their lives . By involving children, their fears are more likely to subside.
Although we had information available for end-of-life discussions with children, there was a gap in our information for when someone has a serious illness, whether they recover or progress to needing end-of-life care. We researched and then brought together appropriate resources to form a book box. We also discussed our idea with a wide range of people to ensure there was a need for this type of support, including the hospital’s chaplains, the equality and diversity team, family services at local hospices, and a paediatric social worker.
Following a meeting with Rebecca Hawkins, our local Macmillan Development Manager, we were fortunate to be awarded a Macmillan Service Improvment Grant for £1,000. We identified five key oncology settings we felt would benefi t from the resource, including breast, lung and neuro-oncology. We used the grant to create five boxes containing a selection of reading books, mainly for younger age groups, a folder containing information provided by Macmillan on how to talk to children, and Macmillan’s booklet and CD, Talking to children and teenagers when an adult has cancer. We also included Stepping Stones cards (postcards from the Childhood Bereavement Network on which children can tick boxes to show what help they need), colouring pictures and crayons.
We created a survey to monitor box usage. These haven’t been used, so we need to look further into this. However, feedback from staff and people with cancer has been encouraging. We are raising awareness of the scheme with colleagues at study days and conferences, and Steve runs a book club where staff read the books to understand their meaning. We have placed two further boxes in palliative care and haematology. The special care baby unit and the dementia ward are both keen to develop the idea.
We hope our book boxes will continue to provide information for families but we are also keen that it acts as a learning tool for all health professionals to develop their skills.
Gill Walsh, Macmillan Neuro-oncology Nurse Specialist, Princess Royal Hospital, Haywards Heath, Sussex
1 Fearnley R. ‘Why communication?’ in Communicating with children when a parent is at the end of their life. 2012. Jessica Kingsley Publishers. London.