Beads of courage

The Beads of Courage programme is designed to provide an additional support function for children and teenagers undergoing serious illness and treatments.

The initial reaction to the Beads is ‘they are very pretty’, but it is not until you see it in action and talk to children and care-givers that you can see the impact that they have.

This programme supports over 10,000 children in the US and has been evaluated over the past 5 years. Major benefits of the programme are that it helps to decrease illness-related distress, increases the use of positive coping strategies, helps children find meaning in illness and restores a sense of self in children coping with serious illness. The programme also provides something tangible that the child can use to tell about their experience during treatment, and for years to come.

The beads help the children to own their story and make sense of the experience they are going through in a very visible and tangible way. The beads gives them a tool to explain it to themselves and the world – to adults, medical professionals, brothers, sisters, friends and says to everybody ‘this is what I’m doing, its not nice but I’m strong and I will get through it’.

The process of a child telling their story begins with understanding what is happening to them. Putting experience into words helps them to recognise their condition more clearly, and empowers them to own their experience, whilst reducing illness related distress. It also helps medical staff in talking to children – it isn’t easy being at the front line of caring for children coping with cancer and their families. One nurse said “I didn’t realise how exciting BOC would be for some of the kids. They could be having the worst day where nothing you do makes them smile, but when you walk in the room with a bumpy bead or beads for that day, for one brief moment all the pain and discomfort seems to go away and suddenly a smile appears. It’s very encouraging to watch”.

Making and displaying their beads of courage collection helps others learn about what unique and strong people these children are. As their string of beads grows, it is something that they can use to remember and retell the story of their treatment. Their story isn’t just about what is happening to them, but it is also about how they are taking control of a tough situation.

With each procedure or milestone in their treatment, they get a special bead. Each bead is their way of saying ‘this might have been hard, but I did it’. Another nurse said “I never would have expected for the beads to have such an effect on anxiety as well as compliance issues related to taking medications. I have also seen changes in patient’s coping skills and confidence with active involvement in this programme”.

Upon enrolment into the programme, each child is given the Beads of Courage bead colour chart. The BOC journey begins when each child is first given a length of string and beads that spell out their first name. Then, colourful beads, each representing a different treatment milestone, are given to the child by their professional health care provider to add to their BOC collection throughout their treatment, as determined by the BOC bead guide. All programme beads were developed in collaboration with experts in the field (nurses, doctors, child life specialists and social workers), so that each bead would reflect meaningful acknowledgment of a child’s treatment journey.