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A pioneering approach to young adult care

By December 20, 2023No Comments

Transplant Australia is pleased to be working with the Sony Foundation to provide a groundbreaking program helping young adults in their transplant journey. Transplant Australia’s Manager, Transplant Education & Support, Angela Cairns, visited one of the clinics this month to see how the traditional care model is changing.

Written by Transplant Education & Support Manager, Angela Cairns.

Buzzing conversations, good food, hoola hoops and juggling colourful scarves greeted me as I walked through the door of this ordinary community health centre. Full of adolescents and young adults, the room was naturally full of life. Conversations centred around what they love to do from an ax throwing enthusiast to paddleboarding in the ocean, pet dogs, driving tests and the challenges of living out of home. A special guest taught those willing how to juggle and ride a unicycle, while some enjoyed the good conversation and snacks available, all with the latest music playing in the background. A youth worker moved among the group encouraging connections.

Anyone who entered may think this was a group of average uni students or friends, gathering for a casual end of year social. Engaging a little more closely in the conversation I would hear organic stories of hospitals, ICU stays, dialysis experiences and medications. For underneath their shirts were ports, failing kidneys or new kidneys and outstanding courageous hearts!

Occasionally one young adult would leave the social setting and come back twenty minutes or so later. Hard for someone to imagine that in that time they were seeing a transplant renal physician to receive their review, treatment or to discuss their waiting or listing for a transplant.


The transition from the warmth and distractions of paediatric hospital care to the starkness of the clinical adult care has always been a challenge for young people with serious medical conditions. For those long on the journey, no longer having their parent by their side to engage with the Doctor, is daunting.

Young Adulthood for most people, in amongst a time of flying the nest, changing relationships (having left school or uni), financial independence (and struggle), and discovering identity, is likewise a time of freedom, independence, care-free lifestyles, the pursuit of dreams, full time study, travel, gap years, choosing life-partners and finding their way in the world. Young adults with the significant whole of life impact of big medical journeys, along with the unknowns, are naturally profoundly impacted, inclusive of their mental health, identity, self-appreciation and belonging.

In Mission Australia’s 19th Annual Youth Survey in 2019, the top 3 personal concerns average young people faced were:

  1. Coping with stress 43%
  2. Mental health 34%
  3. Body Image 33%

On top of the ordinary strains and stresses of young adulthood, imagine the major impact of regular routine medical visits, medication consumption with its varied side effects, treatment compliance, hours of dialysis every day, the risk of extra illness (from average cold viruses that move in the community), acute risk of death, quality of life and serious illness on chronically ill young adults.

In the background, these above average young adults also have dreams to travel, study full time, grow their career, meet new people, and live care-free lives. One patient at the Brisbane clinic, at the appropriate age for getting his Provisional license (and having completed all his hours), was frustrated about the delay in getting his license due to the interruption of his urgent medical challenges, another could no longer work full time and was facing this loss of purpose as well as the financial stress, whilst living far away from home.

The experiences of adolescent transplant recipients vary greatly, but research highlights some common challenges including delays and disruption to their education, greater risk of depression and anxiety, delays in reaching psychosocial milestones, and a reduced sense of autonomy and satisfaction with their life. When recipients begin to take increasing responsibility for managing their own health, they often feel overwhelmed and underprepared, and they are subsequently more likely to partake in health-risky behaviours. Studies also showed that young transplant recipients crave “normality” and wish to be viewed as similar to their peers. Research also suggests that with appropriate support and interventions, young recipients can enjoy additional protection from anxiety and depression and have better clinical outcomes, including adherence to their medication and improved graft function. And this is where the adolescent and young adult clinics make a difference.

The pioneering spirit, passion, fundraising and hard work of the likes of Professor Rob Carroll (Senior Kidney Specialist, The Royal Adelaide Hospital, known internationally for his transplant work) and the Metro North Health AYA Steering Committee (including Alexandra Cation, Lorraine Garry – CNC and Dr Brian Doucet – Nephrologist, from the Royal Brisbane Hospital), mean Adolescent and Young Adults Care has a potentially brighter future. A small handful of clinics across the country are endeavouring a new approach to young adult care.

Offsite from hospitals with good access to public transport, young adults are invited to attend their clinic surrounded by patient peers. Though the clinics are run independently by the respective hospitals and physicians, thanks to the huge generosity of the Sony Foundation, a Transplant Australia youth worker encourages connection through activities and connection spaces in the ‘waiting area’ from candle making, to cupcake icing, to art and juggling. The benefits of this approach to young adult patients are tangible. Connections are found (impacting the sense of isolation many feel), important relationships are formed and everything from mental wellbeing to medication compliance is positively impacted.

I came away from the Brisbane AYA Clinic with new juggling skills and a renewed love of hoola hooping. I also came away deeply moved and in awe of the medical staff who wouldn’t try the unicycle,but would dare to ‘bend over backwards’ to do things differently for those in such an important season of life, when a sense of belonging and connection is so profound on mental and physical health.



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