Beads of Courage

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).

Sample set of beads showing child’s name and also the metal Research sun bead on the left of the thread

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.

Examples of the handmade Bead Bags that children choose when starting on the Beads of Courage

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.

The big special beads representing prior years of challenges since diagnosis.

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.

One of the unique handmade glass beads to mark particular Acts of Courage

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.

The Beads of one of our patients, which at the time of discharge totalled over 1000! (photo with permission)

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.

An example of just some of the beads available

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.

The Parent Bead, given to parents to represent their commitment to their child and support of their own challenges. We also use Sibling Packs.

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.

The Butterfly Bead, for when a child dies.

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.

One of our Beads of Courage heroes (photo with permission)

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.


The Diversity of Youth – LGBTQ+

LGBTQ+ people face inequalities in both their access to and experiences of healthcare. We know that these healthcare inequalities are also faced by LGBTQ+ youth. Healthcare services tend to be hetero-normative, and education for healthcare professionals about LGBTQ+ issues is sadly lacking. Mental health challenges are high amongst the LGBTQ+ community, but there are a wide range of other health-related inequalities which are far less well-known but can have significant impacts on how LGBTQ+ young people access and experience healthcare.

I give an overview of them in the paper below, published recently in Archives of Diseases in Childhood, Education & Practice Edition.

O’Neill T, Wakefield J. Fifteen-minute consultation in the normal child: Challenges relating to sexuality and gender identity in children and young people. Archives of Disease in Childhood-Education and Practice. 2017 May 11:edpract-2016.

Let me ask you the following question:

“Teenage lesbian and bisexual girls have higher rates of what compared to heterosexual girls?”

You might think about it for a moment, and then say “depression”, “anxiety”, “self-harm”. All are correct, but the answer I’m looking for is “pregnancy”.

Yup! Pregnancy.

Pregnancy rates in lesbian and bisexual girls are high, and a result of the well-intentioned international efforts to reduce teenage pregnancies designed with a completely hetero-normative approach. In addition, LB girls are more likely to have consumed alcohol at first sexual encounter, are more likely to be coerced into sex with males, or sexually assaulted, and are less likely to have access to contraceptive options. Interestingly, in rural areas, pregnancy involvement of gay and bisexual boys is also an issue. In some areas, GB boys in rural areas are three times more likely to have a pregnancy involvement compared to GB boys in urban regions.


It is important to remember that sexual identity and sexual behaviour are different things. The nuances between identity and behaviour need to be understood to help guide advice and risk assessment. For example, young males of colour are at particular risk of acquiring HIV. However, for example, a young black male who identifies as straight but has sex with other males is far less likely to use a condom compared to a young black male who identifies as gay.

It is true that mental health challenges are extremely prevalent across the LGBTQ+ community, including in young people. LGBTQ+ youth have disproportionately high levels of depression and anxiety compared to heterosexual and cisgender peers. Self-harm is also a big risk in LGBTQ+ youth. Over half of gay youth self-harm. For young people of colour, this rises to over 80%. Suicidality is high for all LGBTQ+ youth. The suicide rate is most shocking for trans young people, with latest figures suggesting up to a staggering 50% of all trans young people attempt suicide.


Eating disorders are also common in LGBTQ+ youth; again in particular trans young people, who are four times more likely to have an eating disorder than non-trans young people. Without a good awareness and understanding of the issues and emotions experienced by LGBTQ+ youth, healthcare professionals may not be best serving this population. There is limited value in recommending joining a gym, or starting a sport, to tackle obesity without recognising the huge barriers to sport and exercise participation for many LGBTQ+ young people.


Young people often don’t feel they have an adult they can confide in at school, and many schools block access to LGBTQ+ resources and organisations on their computers and in libraries. Very few schools cover any LGBTQ+ topics or include same-sex relationship advice in sex education or PSHE. Interestingly, regions with LGBTQ+ affirmative schools have significantly lower incidences of heavy episodic drinking amongst pupils – regardless of sexuality – compared to areas where LGBT+ issues are not covered, or are discussed negatively.


Unfortunately, home life can be just as challenging as school, with a quarter of all LGBTQ+ young people in the UK who come out to their parents being forced to leave home. Unsurprisingly, then, a quarter of homeless youth in the UK also identify as LGBTQ+. In the United States, at least 40% of homeless youth are LGBTQ+.

Awareness amongst paediatric doctors of issues relating to sexuality and gender identity isn’t particularly good, although if pushed then some would know, or at least speculate, that mental health problems may be more prevalent in LGBTQ+ youth compared to their peers. The surprising pregnancy statistic highlights the need to consider wider healthcare inequalities and the need for a comprehensive approach to designing inclusive services, policies, and interventions.


As well as challenges with mental health, LGBTQ+ young people face a number of other health-related inequalities. For example, we’re more likely to attend A&E for a general health problem than our GP, due to the more anonymous nature of emergency departments. This doesn’t necessarily provide the most appropriate care. Timely access to services is a huge problem for trans young people, with waiting times for gender identity clinics being some of the longest across the entire health service.


I spoke to a trans young person recently who couldn’t get a prescription for antibiotics from the duty doctor at their GP surgery because the doctor “didn’t understand [their] gender history”. Even simple things, such as the language used by healthcare professionals, can make a difference to young people’s experiences. Asking an adolescent boy who identifies as gay whether they have a girlfriend automatically creates an unspoken barrier.


The #TransDocFail twitter campaign highlighted the numerous failures of healthcare professionals and services to properly care for the health of trans people. It highlighted the existing concept of ‘Trans Broken Arm’. This uses the example of a trans person attending an Emergency Department with a radial fracture but having their entire gender history inappropriately explored by the attending doctor, to describe aituations where trans people are treated differently in emergency departments. Similarly, doctors seem to omit gender history questions when they would actually be relevant; such as not considering gynaecological pathologies in a trans male presenting with acute abdominal pain.


A survey of healthcare professionals in the UK found that a quarter of front line staff had heard colleagues make homophobic remarks in the workplace. In some areas, up to one in five staff had heard colleagues make remarks that they believed being LGBT+ could be ‘cured’. So-called ‘gay cure therapies’ can include nausea-pain aversion, electric shock, and exorcism.


Despite the myriad inequalities that exist, it’s surprisingly simple to make changes. Adopting inclusive language across services, displaying welcoming materials (e.g. posters, rainbow flags or LGBTQ+ policies in public-facing spaces), and increasing education and training of staff across the health service can all be done right now and would make a world of difference to young people navigating through challenges in every aspect of their lives.

A comprehensive article about LGBTQ+ youth healthcare inequalities and advice on addressing these can be found here:

I created a set of factsheets in collaboration with the Rural GP Association of Scotland, which have now been used by practices worldwide. They can be found at:

The Storify of my  RCPCH Annual Conference 2016 presentation can be found here.


LGBTQ+: Lesbian, Gay, Bisexual, Transgender, Queer – the plus incorporates a wide range of identities, including fluidity, which may not always have specific labels. From an academic point of view, much published research focuses on LGBT as a group, with some also specifically including queer and questioning identities. LGBTQI+ is often used to include Intersex people, although the scope of this post does not focus on the specific barriers faced by Intersex people within healthcare services (although there are many crossovers). To read more about Intersex read the DFTB series:-

LB: Lesbian and Bisexual

GB: Gay and Bisexual

Trans: Gender identities include trans or transgender, non-binary, third gender, gender fluidity, and several other identities. From an academic point of view, the barriers discussed in this post in general apply to people who do not always identify with the sex that was assigned to them at birth

Cis/Cisgender: Non-trans. Identifies with the gender that matches sex assigned at birth


Many thanks to R Bevan and J Salkind for much of the literature review and compilation of information that formed the background work prior to this blog post