You know that feeling when something is completely and utterly good? Where there are no catches, no downsides; just pure unfiltered goodness. When you discover something that you believe couldn’t possibly get any better? Beads Of Courage – a simple yet beautiful programme to mark a child’s journey through illness – rouses that exact feeling.
So imagine my delight when, on researching the organisation’s origins for this post, I discovered that they were inspired by my all-time favourite thing in the world. Paul Newman’s Hole in the Wall Gang Camps (now known as the SeriousFun Children’s Network), and organisation to which I’ve dedicated the past decade of my life. Perhaps I’ll tell you about that sometime (Ed. – hint taken).
Jean Baruch created the first Beads of Courage programme whilst working on her PhD in Nursing (who says procrastination isn’t worthwhile, hey?), having been inspired by her role as a camp nurse at one of the Hole in the Wall Gang Camps. The first Beads of Courage programme was piloted at Phoenix Children’s Hospital, Arizona in 2003.
Sixteen years later and Beads of Courage can be found in children’s hospitals around the world. The idea is simple: children experiencing significant health-related challenges receive beads to represent each individual hurdle that they achieve, from blood tests and clinic visits, to surgery and chemotherapy, and everything in between. The beads thread together to form a visual, tactile timeline representing each child’s unique journey.
Beads of Courage are most commonly found on children’s oncology and haematology wards. The different beads make a great marker of chemotherapy schedules and can help children and young people to visualise what lies ahead as well as being able to track their progress and see how far they’ve come. Recognising the incredible value of the Beads, hospitals are starting to extend the programme to other conditions.
I have the honour of helping my wonderful nursing colleague Julie to co-ordinate the Beads of Courage for chronic conditions at Edinburgh’s Royal Hospital for Sick Children, in Scotland. I’d like to share some snippets of experience and observations about just how empowering and important the Beads can be to children, young people, and families.
The Beads are a beautifully simple way to improve the experiences of children and families in hospital as they navigate their health challenges. A child can start on the program at any time, not just at time of diagnosis.
A child beginning their Beads of Courage journey receives a starter pack, which includes a Bead Journal, thread, a set of letter beads to spell their name, and a set of beads representing their journey so far. If it’s a while after their diagnosis, then they also get a set of large decorated beads to represent accumulated challenges and achievements to date.
Once started, every health challenge – both physical and psychological – has a representative bead. Every clinic visit, blood test, x-ray, or any other challenge related to the child’s condition is rewarded with a bead, regardless of the ‘success’ of the procedure. The beads, threaded in order, represent a child’s journey. They empower the child to take charge of their healthcare by providing a simple visual aid and representation for what they have been through and are going through.
A child can reflect on their many achievements to date, which often helps them overcome the hurdles ahead. They can see what beads are coming next and use this as a positive in the face of challenges ahead. Particularly big hurdles are rewarded with special beads. This facilitates reflection on past accomplishments when time comes around to do them again.
Glass and ceramic artists from the International Society of Glass Beadmakers (I love that this exists) hand make individual beads which are rewarded for achievements such as surgery, big procedures, first days walking after immobilization, and transplants. ‘Act of Courage’ beads are unique beads which can be rewarded for anything that has been particularly difficult for the child. We find these are really helpful for getting past phobias and other significant challenges for individual children and young people, or even taking charge of their own healthcare with the Beads empowering patients to take their own medications or perform their own procedures.
The Beads also act as a visual reminder to others of exactly what the child has been through. It can be easy for healthcare professionals to forget just how many hurdles a child has been through. The beads help with that. Seeing a length of bead can even help healthcare professionals to minimize the number of procedures and tests a child has to face, or at least properly acknowledge exactly what they are asking their patient to go through.
We have children on a daily basis ring our department doorbell (it plays the Little Mermaid theme) to get a top-up of beads when they’re in for a clinic visit. It adds a really positive aspect to hospital visits.
Beads of Courage are already well-established in our hospital’s oncology and haematology department. When we took on the challenge of extending the programme to the rest of the hospital, we found a few useful techniques that helped us spread the Beads to as many children as hospital. We started offering the Beads to children admitted to PICU and HDU, reflecting their monumental journeys. These children had a range of conditions and eventually progressed to step-down to a number of different wards in the hospital. This enabled us to visit all of these wards and start to demonstrate the effectiveness of the programme.
Soon, ward staff were identifying other children under their care who might benefit from Beads of Courage. We have worked closely with Specialist Nurses, Play Therapists and other Allied Health Professionals to offer Beads to as many children as possible. Julie and I both work in our Clinical Research Facility, and all of our clinical trial participants also receive Beads (including a special metallic ‘Research Bead’) to represent their participation in exciting and breakthrough studies.
There are many benefits to using Beads of Courage, but perhaps most importantly the Beads help children to articulate aspects of the condition and related health challenges. They can use the beads as a starter for what they want to discuss, and can refer to them when talking about fears or anxieties. The beads break down the barriers between their condition and their peers, allowing them to show and explain these barriers easily becomes less daunting to both them and their friends.
For parents and healthcare professionals, talking to a child about what bead they might be a little worried about getting in the future is also an incredibly useful way of facilitating difficult conversations with children and young people.
It’s not just children either; we have a number of teenagers who absolutely adore the Beads of Courage and see them as a really vital part of their healthcare. We also do sibling packs and parent beads which recognize the wider challenges families face. If on the rare occasion a child dies, a special Butterfly Bead marks the bereavement and creates closure for the Beads journey, which parents find incredibly important and prevents the painful reminder of seeing an ‘unfinished’ thread of beads.
Julie and I find it an incredible honour to be involved with Beads of Courage and it is one of the most rewarding aspects of our jobs. Starting a child of the programme takes around 10 minutes, and topping-up their beads after that only takes a few minutes each time. It’s an easy and enjoyable part of my day which takes next to no time at all but is hugely rewarding and important. Hospital charities and local organisations are often keen to support the programme as it provides tangible, evidence-able (is that a word?) feedback of its effectiveness. So what are you waiting for? Get Beads of Courage started in your hospital today.
Thom O’Neill and Julie Baggott (Senior Paediatric Research Nurse, Royal Hospital for Sick Children, Edinburgh)
Thanks & Disclaimer: A billion thank-yous to Edinburgh Children’s Hospital Charity and Edinburgh & Lothian Health Foundation, who both support us locally to run Beads of Courage. In the UK the Beads of Courage programme is distributed by Be Child Cancer Aware. We have no financial link to Beads of Courage and have written about them purely from our own admiration for the organisation.