Losing her father suddenly to cancer and amidst a cloak of silence had a profound effect on Caroline Leek, inspiring her to help other families affected by the disease.
“Results show that children who have a parent or carer diagnosed with cancer are at high risk of developing negative psychosocial problems, such as anxiety, sadness, anger, or irrational feelings of guilt (Visser et al., 2004). Parents also report the difficulty of explaining cancer to their children in an age-appropriate way, and find it problematic to use words and terms that their children will understand. This poor communication is known to deepen the negative psychosocial feelings a child experiences (Semple & McCance, 2010).
“A week before my 13th birthday, my father died from cancer. There were no conversations about his illness or death, and my mum and I never really spoke about him again. Things started to crumble in my 30s and that’s when I faced up to the massive hidden grief I had been carrying.
After researching the effects of parental cancer on children, and the lack of provisions available to children who had a parent diagnosed with cancer, I started the not for profit organisation Fruit Fly Collective, and with funding from, amongst others, Arts Council England, Comic Relief and The Big Lottery, developed The Cancer Clouds Kits – toolkits for children whose parents have cancer.
The kits were developed in collaboration with healthcare professionals, artists, patients and their families. Inside each toolkit there are over twenty tools that are age-appropriate, and either educational (helping to increase the understanding of cancer and its treatments), practical (supporting changes in home life to help manage children’s expectations), or tools that encourage communication about the emotional changes the family may face. They feature models, toys, question boxes, and timelines and promote open and organic discussion within the family or with relevant professionals.
There are three different age-appropriate ready-made kits. The Hedgehog Cloud Kits are for 3-5 year olds; Tiger Cloud Kits are for 6-11 year olds, and the Cancer Cloud Kits are for 12-16 year olds. In 2016 we entered The Tiger Cloud Kit into the British Medical Association (BMA) patient information awards and it won in two categories, one for children and one for innovation.
The kits are used in multiple NHS Trusts around the UK, and by organisations such as Macmillan, Maggie’s, and local hospices. A variety of professionals, such as nurses, clinical psychologists, teachers, therapists, cancer support groups, school counsellors, and social workers, have used them in their work with children, young people and families. People living with cancer, or affected by cancer, can order them directly from the website. Each kit comes with a ‘How to use’ guide, providing suggestions on how families may benefit from each tool.
With the support from Guy’s and St Thomas’ charity, we have now developed the website so that people can create their own bespoke kit by selecting tools that serves the needs of their own family. We hope this will make them more accessible to everyone but reducing the cost.”
Find out more and how to order your own kit here.
A mother diagnosed with breast cancer, who has a seven year old daughter: ‘After the bombshell of diagnosis, I was not fit enough to do the research needed to best help my daughter understand what was happening to me – and there were no resources offered to us. One professional simply said: ‘She’ll be OK – girls deal with it well. She’ll just grow up a little faster.’ But I know that’s simply not the case – 40% of adults diagnosed with cancer become severely depressed – what about the children? As a single parent, I had to make sure she was not hiding her fear, sadness or anger. My daughter loved the Cloud Kit – she fell upon it like it was a treasure box. It enables us to have the conversations we need to at each stage of my treatment.’
Consultant Clinical Psychologist at Maggie’s: ‘I had a 14 year old who was self-harming due to the stress of her step-father’s cancer treatment. The Cloud Kit provided a beautiful way to open a much-needed conversation between the mother and child, facilitated by me.’
Mother of an eleven year old daughter and a fourteen year old son: ‘I used the sentences in the parent’s book to help me tell the children I had cancer. It really helped them and made me feel stronger. We put the feelings tree up in the bedroom and I left them to put on the leaves. I was amazed that they only put positive feelings on. This made me feel a lot happier. ‘
Former Children’s Commissioner for England, Sir Al Aynsley-Green: ‘This outstanding ‘Tiger Cloud Kit’ is designed to help children cope with their parent’s cancer diagnosis by increasing their understanding of what cancer is, how it can be treated, and how family life will change. It is also an important resource for professional staff to encourage them to always consider how the diagnosis will affect the children in the family. I commend this kit unreservedly.’
British Medical Association Patient Information Awards Director: ‘The list of specialist contributors and the consultation methodology are clearly visible in the high quality kit. The booklets alone would stand as exceptional for the quality of production and clarity.’
Semple, C & McCance, T; 2010: Parents’ experience of cancer who have young children: a literature review. Cancer Nursing, 33 (2). pp. 110-118.
Visser A, Huizinga G, van der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers J; 2004: The impact of parental cancer on children and the family: a review of the literature. Cancer Treatment Reviews; 30: 683-694.