Caring for my Family with Cancer
Velindre Cancer Centre
Velindre Cancer Centre in Whitchurch, Cardiff, provides specialist cancer services to people living in South East Wales and is one of the 10 largest cancer centres in the UK. The Cancer Centre is a specialist treatment, teaching and research and development centre for non-surgical oncology, treating patients with chemotherapy, radiotherapy and related treatments, and caring for patients with specialist palliative care needs. We provide services to over 1.5 million people across South East Wales and beyond. each year we treat over 5,000 new referrals and around 50,000 new outpatients. Our dedicated staff of over 670 work as a close knit team. Our aim is to provide patients & families with the best possible care and treatment.
Inspired by experiences of families, cancer nurse Michele Pengelly was concerned about the paucity of resources helping newly diagnosed cancer patients talk to their children about cancer and the impact on families. Resources were limited, mostly using heteronormative images, questionable for the diversity of modern-day.
Demonstrating a collaborative partnership with Equality Manger Ceri Harris, the idea followed to write a series of books which are fully diverse, accessible and fit for purpose including audio/BSL. Following consultation with patients, children and professionals the first Caring for my family with Cancer book was successfully launched in 2015. 150 have now been issued.
The series of 6 books is innovative as a completely diverse, accessible resource aiming to support cancer patients to talk to their children about cancer. Utilising modern technology and computer graphics, the books have provided positive outcomes to families experiences, have longevity, are cost effective and include single parent and same sex families. This use of technology and charitable funding to support costs has meant that the series of books is fully sustainable. The simplicity of the family story has contributed to a project with transferability. The dissemination of this work has been through professional, public and third sector events.
Michele Pengelly, a cancer nurse with 30 years experience has worked with numerous parents who made decisions not to talk to their children about their cancer. Sometimes the parents’ health deteriorates and they sadly die with their children still unaware of the cancer and no understanding of what has happened.
Michele facilitates a children’s bereavement group; listening to these children’s stories and observing their pictures and memory jars she felt passionately that we could do better and take a more proactive approach. For parents who did want to explain cancer and their treatment the current resources were not always appropriate. Resources were limited, mostly using heteronormative images, questionable for the diversity of modern-day families (single parents, same sex) to give a father a story book about breast cancer because there was nothing else available was not good enough!
Michele had the idea of writing a book to mirror the families we were meeting in clinical practice. In 2014 meeting with Trust Equality manager, Ceri Harris, 20 years� experience in equality, both felt passionately there was a need to create a resource that not only looked at gender concerns, but to develop a series of books; fully diverse, accessible and fit for purpose, including BSL and audio versions in several languages that would meet the needs of families who used the services at Velindre. The aim was to meet a gap in resources and enable safe and open conversation about cancer within families so that children were part of the experiences in a positive way.
From the outset engaging & involving stakeholders was hugely important; equality groups, parents, clinical psychologists and nursing staff, to ensure the books met everyone’s expectations and needs. Ensuring the language used was fit for purpose and that support was provided to parents in how to use the books effectively.
An internal governance group was established as well as a stakeholder group, so we were confident that the books met all obligations. Michele and Ceri worked closely with the artist and digital colourist to develop the characters within the books to reflect diversity.
Velindre fundraising were involved in the funding of the printing and additional costs. Clinical and nursing staff received training on how to use the books with parents and support them with any difficult questions and situations. We were fortunate that Cardiff born Hollywood actor Matthew Rhys, patron of fundraising, provided bilingual audio versions of the book, professionally recorded in a studio in LA, and sent for the launch. Matthew’s beautiful tone and animated approach brings to life the story of the little girl Lucy and her family’s experience of cancer.
The final version of the first book was agreed by the stakeholder group, prior to printing, so everyone involved was aware and agreed on the final product.
This year we have evaluated and revised the books following comments from staff, patients and their families and produced the British Sign language Version which we launched in November as part of Sensory Loss Awareness Month in Wales.
Books are issued to families together with a set of cuddly lions (one for the child & one for the parent) to reduce separation anxiety if the parent needs to come into hospital; the lions feature in the books too!
The impact has been so positive using both quantitative and qualitative methodologies including patient experience digital stories. We have attached as part of our application a video of Vincent, a little boy who received the book and cuddly lions when his mother was a patient with us. He speaks so eloquently about how useful and important the book was to him; how he recognised himself within the book and that he even though he looked like the little boy, Jack.
We asked each family who received a copy to provide comments and feedback, this helped us evaluate and revise future versions. We spoke to clinicians, asking if they found it a useful resource. We keep data on numbers of families using the resource, ages of children and which type of book is most used.
What surprised us is that we are now seeing the lions appear in the children’s memory boxes when they attend the children’s bereavement group. This demonstrates how important the lions were as part of their own journeys, how they found comfort in the books and lions and the positivity they must have given during a very upsetting time.
An additional outcome is that the Trust has been approached by a number of health organisations not just from Wales but across the UK asking about the project and wanting to purchase copies of the books.
As identified throughout this application, the project has involved and seeks to involve more internal and external stakeholders. We realised the value of the books and how they have helped families and hope to develop future resources that can be used externally, whether for cancer or modified to be used for other conditions.
Key Learning Points
Engagement – It is essential to involve the parents and families from the outset and to keep their involvement throughout the pilot study and change management process. This gives a greater integrity and heart to the project.
Training – Collaborate with training departments and staff personal development reviews to help identify the training needs for those delivering care with the new resource. What additional support and advice they may need to deliver this service and build this into training programmes.
Technology – How can you best use current and future technology? For example by using a digital colourist and artist we are able to create picture layers, so characters, and elements of the story can be easily added or taken away to develop further books.
Adaptability – The methodology could be used in other fields, for example ‘Caring for my family with motor neurone disease?’. The use of modern technology means it can be adapted and updated if cancer treatments change.
Sharing Best Practice – Don’t keep it to yourself. There will be lots of other organisations with similar challenges struggling to develop solutions. Through events, conferences and publications take every opportunity to share.