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Global Accord Grant secured for end-of-life care study

26/9/2018

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Dr Ursula Sansom-Daly (Team leader of the Mental Health Team at the BSU) and an international team of investigators have recently been awarded the inaugural Adolescent and Young Adult (AYA) Cancer Global Accord Grant, which will provide $60,000 to support research into best-practice end-of-life care and communication for young people with cancer.

Healthcare professionals treating adolescents and young adults facing terminal illnesses like cancer often find it difficult to approach end-of-life discussions with patients and their families. However, we know that avoiding these conversations can mean worse outcomes for young patients, who are more likely to suffer from anxiety and feelings of emotional isolation surrounding their illness if their wishes for end-of-life care are not heard.

Healthcare professionals are often relied upon to initiate these conversations, but there is currently no training available to assist them in talking to young people about end-of-life. To better facilitate end-of-life discussions, the 2018 Global Accord Grant will provide funding to develop training tools for clinicians who work with adolescents and young adults with cancer. In order to develop training tools that are effective and useful for clinicians working across a range of settings, the first stage of the study will also be to benchmark current practices in end-of-life communication with young people with cancer, internationally. This international survey of healthcare professionals will feed directly into a consensus-building exercise to determine what types of end-of-life communication training diverse healthcare professionals feel is most urgently needed. We hope that the training tools we ultimately develop will provide clinicians with the confidence and skills they need to begin end-of-life discussions and improve patient wellbeing during this difficult time.

The grant, provided by CanTeen Australia, Teen Cancer America and the UK Teenage Cancer Trust, emphasises global research collaboration. Dr Sansom-Daly’s team includes 24 international researchers and clinicians from the UK, USA, Canada and New Zealand. The team will provide global perspectives on the best ways to approach end of life care conversations. Her team of local experts is joined by a number of important international contributors including Dr Lori Wiener (National Cancer Institute, USA), Associate Professor Anne-Sophie Darlington (University of Southampton, UK), Dr Hanneke Poort (Dana Farber Cancer Institute, USA), Associate Professor Abby Rosenberg (University of Washington, USA), Associate Professor Meaghann Weaver (University of Nebraska Medical Center, USA), and Dr Jennifer Mack (Dana Farber Cancer Institute, USA), among others.
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Ultimately, the study hopes to develop tools that can be utilised by all types of clinicians involved in the treatment of young people with cancer. This will provide clinicians with the confidence and communication skills they need to address challenging end-of-life discussions with young cancer patients, in order to best support patients through to the end of their lives. 
Hear Dr Ursula Sansom-Daly’s interview about this new project with Chris Bath on ABC Radio Sydney’s Drive program, Wednesday 25th July 2018
Interview: "How to Have the 'end-of-life' chat" - Ursula Sansom-Daly
File Size: 25671 kb
File Type: mp3
Download File

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Childhood cancer survivor Christian Mueller tells us about his visit to Australia! by Christian Mueller

11/9/2018

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When I started to work at the German Late Effects Surveillance System study group (LESS) for childhood cancer late effects at the beginning of 2014, it didn’t take a long time until I found information about activities of the Behavioural Sciences Unit (BSU) in Sydney. Based on my own childhood cancer survivors’ experiences, I’m interested in psychosocial problems after treatment.
Unfortunately, there was never a chance to travel to Australia but fortunately we kept in touch via email and Twitter. In the meantime, I changed my job to the Gert and Susanna Mayer Foundation in Wuppertal (Germany) which supports childhood cancer research projects but I’ll never lose my interests in research topics like late effects and long-term care and so in August 2018 my dream has finally come true: I could visit Claire Wakefield and her team at the BSU for one week! My first flight for 20 years led me to a distance of more than 20,000 km.

To my own surprise I had no jet lag issues and had a great Sunday for sightseeing. I stood in front of the Harbour Bridge and Sydney Opera House which I had only known from television. I am not sure anyone could really understand the meaning of such an emotional moment for me.
My visit began on Monday at the BSU in the “Ethics and Genetics” team. On Tuesday and Wednesday I was in the “Mental Health” team and on Thursday and Friday in the “Health Behaviours” and “Cognition and Education” teams.

During the whole week I took part at team lunches and meetings, practice talks for the Cancer Counselling Professionals Conference, Journal Club, team talks, observed exercise testing of former childhood cancer patients and got informed in detail about each current research project or study.
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It was great to visit an amazing city like Sydney but even more amazing were the wonderful people I met in person after being connected for so many years via social media. I have never been so warmly welcomed in one place before. I flew back to Germany with countless impressions after a week in Sydney and at the BSU. I will return. Thanks to everyone who cared for me. There are too many people to be listed here but I would like to mention Claire Wakefield on behalf of her staff.
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This piece originally appeared in Issue 2 of the Pediatric Psycho-Oncology Professionals/Providers International (POPPI) Newsletter. To subscribe to this newsletter, please contact Sasja Schepers (Editor) or Christina Signorelli (Co-Editor).
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