Beads of Courage in Ward 2, RHSC

What is it? A system whereby children are given beads representing each medical procedure they have encountered, to strengthen resilience and alleviate suffering

Timescale Ward 2 were introduced to the system in July by trainers from USA, who also visited Addenbrookes, Great Ormond Street and QMC Nottingham All staff received beads to recognise and honour their work with children Later the same afternoon, all children on the ward had beads Children diagnosed previously have also been enrolled onto the system

Other bead programmes Also available in these areas Cardiac patients Neonatal ICU Siblings Bereavement Burns Chronic illness Clinician retreats

A few facts Founded in 2004 by Jean Baruch, an oncology nurse in Arizona Funded by charitable donations Beads donated by glass artists and bead bags by sewing groups

Where is it used? Used with 10,000 children in USA Used in 26 hospitals in UK, and also in Japan and New Zealand Established with oncology/haematology patients but programme is extending to other diagnoses, and to siblings

How it works Children are given beads, representing milestones such as overnight stays, chemo, MRIs, hair loss, radiotherapy, port access etc Certain beads have specific meanings Some are mass-produced for ‘ordinary’ experiences More unusual, unique ones are given for more significant procedures A purple heart is given for completion

Types of beads Every child starts with letter beads on a string to spell their name Many beads are for common procedures Individually packaged beads are for more significant events, such as bone marrow transplant or a particular act of courage (eg learning to self-catheterise). A card explains what each bead is for There are ‘booster’ beads to encourage children who seem to be struggling

Daily bead journal Every family is given a daily bead journal on which they record which procedures the child has been through that day. This allows a record to be kept even if staff are too busy at that moment to hand out beads

Bead trolley Beads are kept in a wheel-able trolley on the ward for easy access The play specialist supervises bead distribution, but all staff members are familiar with the system and can give them out Supplies are ordered from the charity bechildcanceraware in Birmingham, who in turn imports them from USA

Where are they put? The child collects the beads on a string The first beads threaded onto the string make the child’s name Some children end up with beads many feet long, depending on the treatment protocol They can be worn as necklaces, or hung on toys, or kept safe in a bag Children wear them to clinic and bring them into the ward

Why beads? Beads are significant in many cultures They can signify strength and courage They have everyday uses – weights, prayer tools, decoration They carry value, and have been used to trade for many centuries Some cultures believe they carry protective and healing powers They signify status and prestige in some cultures Children love to thread beads

Introducing beads to Ghana twinning programme Ward 2 is twinned with a paediatric hospital in Accra Beads so successful in ward 2 that there are plans to introduce a simplified version of them at the next teaching session in Ghana

African beads

Aims of collecting beads Each bead tells a story Help the child to discuss their journey Mark milestones Help memories Signify courage and resilience Reward Increase positive coping strategies Help with perspective of time

Patient stories

Funding The programme is funded in this country by bechildcanceraware Cost is £3250 per hospital for one year’s supply They hope for donations Some hospitals are funded for a period in memory of children, or from other charitable donations

Potential problems Even teenagers and boys love beads - somewhat to our surprise ! Infection control – all beads are glass or plastic and washable. The string is plastic. Staff time – it took a lot of time to get all existing children on the programme, but it is now manageable

Survey results 10 families surveyed Overwhelmingly positive ratings on every question ‘The beads of courage have been such a good thing. I know my son gets excited about getting them and it has also been a way of my son talking about his illness.’

References Baruch J. (2010) ‘The beads of courage program for children coping with cancer’ Doctoral dissertation

Presentation by Helen Veitch, Play Specialist Jenny Tomes, Clinical Psychologist Oncology/Haematology Service, RHSC, Edinburgh