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. 

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.

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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Please describe your education and training
I am a Psychology student in Bogota, Colombia, and I’m currently undertaking the Study Abroad Research Practicum at UNSW. Since I was very young I have been interested in child development and education, and with the bachelor’s degree I developed an attraction towards human behaviour and the brain. Hence, I would like to do a master’s degree in neuropsychology and education. Last year, as part of my degree, I did internships in preschool and high school environments supporting children that misbehaved in class and had family or personal issues. In last semester’s internship I learned about neuropsychological assessment in children.

What is your current role?
I am a practicum student working on a research project in the Ethics & Genetics team of the BSU called “Quality of life, family relationships and information needs in siblings of children with a chronic illness (The SibStars Study)”. This study aims to investigate the wellbeing and quality of life of siblings of children with chronic illnesses, and their information and support needs.

What are the ‘best’ parts of your current role?
First, I would say to work surrounded by people who not only care about children’s and families’ wellbeing, but who take on responsibility for developing knowledge and evidence-based practice.  I also really enjoy working on projects involving  children, adolescents and young adults. I am also learning new skills in both quantitative and qualitative methods, that I’m sure will be useful for my post-graduate studies. I am also, receiving regular supervision with Dr Lauren Kelada, and consider feedback a vital element in learning processes.

Where do you see yourself in five years’ time?
I would have graduated from my current degree and gained professional experience in educational contexts, especially with children. I hope to be completing a master’s degree, probably in neuropsychology and education.
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What advice would you have for someone wanting to follow a similar path in terms of their study/career?
To be curious and daring about what psychology offers, given that its knowledge can be applied in a wide range of fields. It is important to explore different areas to discover what you’re really passionate about. Looking for opportunities in other countries is really helpful as you surely will learn new things and expand your perspective. 

Please describe your education and training

I completed a Bachelor of Political, Economic & Social Sciences majoring in Sociology, at the University of Sydney. I have always been very interested in people and the world around me. My particular interest in health grew stronger throughout my undergraduate studies, inspiring me to complete a Master of Public Health. While completing my studies I worked as a Strength & Conditioning coach in a holistic gym, working with elite athletes and general members of the public alike to improve their health through mobility, movement, mindset and nutrition. Prior to joining the BSU, I worked as a clinical trial assistant at the George Institute for Global Health and as a research consultant for EllaWell, a clinic for diabetes prevention and management. Overall, I am most keenly interested in chronic disease prevention and the vital role that nutrition and lifestyle plays in our health and wellbeing.

What is your current role?

I am a Research Assistant in the Ethics & Genetics team of the Behavioural Sciences Unit. I am working on various projects including the Genetics Counselling Experiences Study and ‘GenPact’: The Psycho-social Impact of Genetic Testing in Childhood Cancer. These studies are investigating families’ (including parents, children with cancer, and their siblings) experiences of genetic counselling and testing. These studies ultimately aim to improve genetic services for future young patients and their families.
I am also working on a new research collaboration between the UNSW Faculty of Engineering and the Genetics & Ethics team which aims to develop a program to detect emotional distress using speech analysis technology. This kind of research is fascinating because it has the potential to solve important problems, such as how can we objectively diagnosing depression.

What are the ‘best’ parts of your current role?
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The best part of my role is the constant process of learning across different areas of research. I also find it really motivating to work in a team of passionate, intelligent individuals who are aiming to make positive, practical changes to the lives of families affected by cancer.
What are the most challenging parts of your current role?
It is sometimes challenging to hear about the difficult and distressing experiences that families may face. Listening to the stories of those affected by cancer can have a profound emotional impact, but in a way that has helped me become a more understanding and empathetic researcher.

Where do you see yourself in five years’ time?

In five years’ time, I’d love to have at least started a PhD! Until that time however, I would hope to be working in the health, research or policy arena (or maybe a combination of all of the above), to positively influence the health of others.

What advice would you have for someone wanting to follow a similar path in terms of their study/career?

Discovering what you feel most passionate about will come from exploring your ‘why’. I found that reading widely and looking to mentors for inspiration really helped me to establish my interests and passions. Until you try different pursuits, it is difficult to know what you will enjoy or where your strengths lie.
The best advice I can give would be to pursue subjects throughout your studies that you find most stimulating. Don’t be afraid to seek out opportunities with academics, institutes, universities, government or charity organisations whose work you admire. You never know what it may lead to, and what connections you may build. My first research positions came from contacting a Professor I’d had contact with at university, which led to a research training internship then a paid position. I’ve also found social platforms a rather useful way to get in touch with potential employers.  A second opportunity arose for me after simply messaging a contact that added me on LinkedIn.

Eden Robertson, PhD candidate at the Behavioural Sciences Unit, has led the development of a decision aid for pediatric oncology clinical trial enrolment, called ‘Delta’.
 
Ms Robertson has recently published the development process of Delta and user testing results in JMIR Research Protocols.
 
The main of aim of Delta is to improve clinical trial knowledge and facilitate treatment discussions and shared decision making between families and healthcare professionals. Delta incorporates general content about clinical trials (eg, what are clinical trials, how do clinical trials work), the specific clinical trial information sheet, and a unique decision-making exercise.

The development of Delta was supported by a steering committee, and followed the principles of Agile.  Agile focuses on collaborations between developers and stakeholders, flexible methodology, and the ability to respond quickly to change through multiple iterations. Using Agile allowed for the development of a high-quality and high-value project within the constraints of cost, schedule, and scope. 
 
To assess the usability of Delta, we incorporated eye-tracking analyses to determine where participants’ gaze lingered, their length of gaze, and readability (ie, scanning, reading, or rereading of content). Seven parents and six healthcare professionals participated in user testing.
 
User testing revealed that, overall, both HCPs and parents found Delta to be acceptable and useful. 
 
“After this tool, we would really start talking with each other. The exercise is great—it becomes a tool at that point for more people to really engage.” [Mother of a 13-year-old boy with osteosarcoma]
 
One particularly interesting finding was that few participants saw the side panel for instructions on how to use the decision-making exercise. This indicates that the instructions needed to be more obvious.

You can read more about the Delta study here. You can also access this full manuscript here.

DOI: 10.2196/resprot.9258

The Behavioural Sciences Unit is Proudly Supported by the Kids Cancer Foundation.

Brittany McGill, clinical psychologist and PhD candidate at the Behavioural Sciences Unit, along with authors from UNSW Sydney, Princes of Wales Hospital, the Garvan Institute of Medical Research and Boston Children’s Hospital, has recently published a systematic review in Clinical Genetics that addresses this question.

With advances in genetic technologies, children and young people are increasingly likely to be exposed to genetic information about inherited health risks that is relevant to them, and to the health of their family. We aimed to summarise the literature, across illnesses, to determine what children and young people understand about inheritance and their attitudes towards genetic testing.

We screened 1815 articles to identify 20 studies representing the perspectives of 1811 children and young people between the ages of 6 and 21 years.  
Our results showed that:

• Healthy children and young people demonstrated a basic understanding that disease predisposition can be inherited within families;
• Children and young people affected by, or at risk of, genetic conditions inferred their risk from family narratives and/or by observing patterns of illness in their family;
• Misunderstandings of important genetic concepts (e.g. what it means to be a ‘carrier’) were evident in some groups;
• Children and young people expressed a willingness to undertake personal genetic testing – in both personally-relevant and hypothetical scenarios; BUT
• They expressed concerns about a variety of relevant issues, including the possible negative psychological and social impacts of receiving genetic test results.

Childhood and adolescence encompasses complex and dynamic developmental stages. Young patients and those at risk of genetic conditions require developmentally-informed resources and support to navigate the unique landscape of their condition.  

You can access the published systematic review here: https://onlinelibrary.wiley.com/doi/abs/10.1111/cge.13253


https://doi.org/10.1111/cge.13253

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation Australia

Please describe your education and training
I completed a Bachelor of Education (Primary) (Hons, Class 1) at Charles Sturt University, graduating in 2009. Over the course of my degree and concurrent practicums, I developed an interest in the types of inclusive practices that could best support students with special needs in mainstream schools. As a result, I decided to further explore this by applying for the honours program, culminating in a dissertation titled, “It’s the essence of education”: Exploring the inclusive practices of effective educators. The study looked at the effective inclusive practices being employed in mainstream classrooms through interviews and observations with primary and high school teachers.

After completion of my degree, I worked at Charles Sturt University (CSU), Wagga Wagga for six years as a research assistant and, more recently, as a research and events coordinator for CSU’s Digital Learning Innovation Laboratory: u!magine. During my time at CSU, I worked for multiple researchers, mainly in areas of education and information studies. When it comes to research, I would describe myself as qualitatively driven: I really enjoy interviewing participants as well as observing the practice and/or behaviours of individuals. I’m intrigued by the ‘human element’ and often find myself wanting to make sense of the world in this way.
I also have experience working as an administrative assistant and primary school teacher. Outside of work hours, I have a passion for the performing arts and enjoy singing, dancing and aerial yoga.

What is your current role?
I am working as Research Officer in the Mental Health Team of the Behavioural Sciences Unit. I’m primarily working on the Cascade and Recapture Life studies. These studies are looking at ways in which to best support young people and their families after cancer treatment specifically through online support groups led by a psychologist. Both the Cascade and Recapture Life projects will soon be moving into their implementation phase. I’m looking forward to working with the research team on this exciting and important application of the study to the wider community through support organisations.

What are the ‘best’ parts of your current role?
The BSU team has warmly welcomed me and I’m really enjoying working with and getting to know my colleagues. We are a very friendly, knowledgeable and fun group. In addition to this, it’s a nice feeling knowing that the research I’m involved in and the work that I’m doing is in support of a larger goal to improve people’s lives after cancer. I feel that I’m part of something meaningful, where the research has an important and significant real life application and impact.

What are the most challenging parts of your current role?
Coming from an education background, I would say that it is a bit of a transition to the health/psychology discipline. There are many new terms, concepts and ideas. However, I’ve enjoyed learning more about the field and working in a team where research is aiming to make a real and positive impact on the lives of those that have been affected by cancer.

Where do you see yourself in five years’ time?
That is a very tricky question! I hope that wherever I am, I'm doing something worthwhile plus still learning and developing my knowledge and skills – whether that be in research or another area if that is where life takes me.

What advice would you have for someone wanting to follow a similar path in terms of their study/career?
I think it’s important to think about what interests and drives you as a person, perhaps also something that you feel is contributing and making a difference to the world. When I began my education degree, I certainly never imagined that I would complete honours and end up in research, but I took opportunities as they came to me and was lucky to gain some valuable experience and skills that have led me to where I am now.

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

What is your current role?
I am a Post-Doctoral Research Fellow within the Ethics and Genetics team of the Behavioural Sciences Unit. I am currently working on projects examining the psychosocial impact of childhood chronic illness on families.

What are the ‘best’ parts of your current role?
It is has been so inspiring and enjoyable to be part of a team of such talented researchers. I think the best part of the role is knowing that the research we complete will actually translate to improvements in quality of life for children with chronic illnesses and their families.

Please describe your education and training.
I completed my PhD in psychology in 2017 at Monash University. My PhD examined adolescent nonsuicidal self-injury and recovery from the perspectives of adolescents, parents and schools. I also worked with researchers at Cornell University and the University of Leuven to compare recovery from self-injury among Australian, Belgian and American young people.

After my PhD I worked at Rape and Domestic Violence Services, a non-profit which provides specialised, trauma-informed counselling to survivors of sexual and family violence and child abuse. In this role I worked on several research projects, including one which examined the emotional toll that working in the field of family violence has on service providers, known as vicarious traumatisation.

What are the most challenging parts of your current role?
In my role I have had to learn more about childhood chronic illness and genetic testing which has been challenging but mostly fascinating.

Where do you see yourself in five years’ time?
I’d like to still be working in the field of child and family health and wellbeing and conducting translational research to improve health outcomes for families.

What advice would you have for someone wanting to follow a similar path in terms of their study/career? 
Be open to new opportunities and challenges – when I was completing my PhD I didn’t think I would end up working in a medical setting but now I couldn’t imagine being anywhere else!

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

Eden Robertson, PhD candidate at the Behavioural Sciences Unit, along with national and international collaborators, has recently published a systematic review in Patient Education and Counseling that aims to answer this question.   

Clinical trials are designed to test the safety and efficacy of new diagnostic tests or treatments. While they are necessary to improve outcomes childhood cancer, many families find deciding whether to enrol in a clinical trial difficult.

Shared decision-making is perhaps the most ethical approach for clinical trial enrolment decisions considering that usually there is no single ‘correct’ decision. In childhood cancer, shared decision-making is typically between parents and healthcare professionals. In some cases it can also extend to include the patient.

As no interventions have yet been formally evaluated to determine how best to facilitate shared decision-making in paediatric oncology clinical trials, we undertook a systematic review to identify any recommendations published in the literature.

We reviewed 924 articles to reveal 17 studies that recommended at least one strategy to facilitate shared decision-making in paediatric oncology clinical trials.

Our results highlight that:

• decision-making about clinical trials is a process, not just a single decision;
• each family (and family-member) has personal preferences for how much they want to be involved in  decisions and how much information they receive, and that this can change over time;
• information needs to be clear and jargon-free;
• healthcare professionals should encourage parents and young patients to ask questions;  and
• families need more support to help them make decisions that best align with their values.

This review has led to the development of ‘Delta’, a decision aid for families who are considering enrolling in a clinical trial. You can read more about the Delta study here. You can also access the published systematic review here. 

https://doi.org/10.1016/j.pec.2018.02.001

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

Clarissa Schilstra has recently joined the BSU team as a research officer for the Education and Cognition stream. This is her first post for the BSU blog.

As a two-time cancer survivor, I feel incredibly privileged to be able to work with the BSU on studies and interventions that I know are helping to take steps towards making a positive difference in the lives of children and young people with cancer and their families.

I was first diagnosed with Acute Lymphoblastic Leukaemia when I was 2 ½. I was born in Pennsylvania, in the U.S., so I went through 2 ½ years of chemotherapy at the Children’s Hospital of Philadelphia. Fortunately, the treatment was successful and I went into remission. I do not remember almost anything from that first bout with cancer. However, in June of 2007, at the age of 13, about 10 years after my initial diagnosis, my leukaemia relapsed. I then had to go through another 2 ½ years of chemotherapy, this time also accompanied by 2 weeks of radiation to my head. I was living in Maryland, in the U.S. at the time, so was treated at Johns Hopkins Hospital.

Going through cancer treatment as a teenager changed my life in more ways that I can count. Unlike the treatment I went through as a child, as a teenager, I understood exactly what was happening to me and remember everything I went through. Because of the intensity of my treatment and its impact on my immune system, I was not allowed to go to school for the entire first year and a half of my treatment. Instead, I was taught at home, by a teacher provided by my state’s home and hospital teaching program (a luxury that I later found out does not exist in most states in the U.S.). The social isolation imposed by my treatment, and the difficulty I had relating to my peers when I finally did go back to school, were incredibly difficult to manage. In many ways, I found the social and emotional challenges of going through cancer treatment as a teenager to be more difficult to handle than the physical impact of treatment.

The social and emotional challenges resulting from the isolation, physical changes (hair loss, scarring, weight gain, etc.), and extended amount of time I spent only around adults, were made even harder by the fact that it was nearly impossible to find other people my age who could understand what I was going through. I felt like I was the only one whose life was completely out of control. The playroom was for little kids and the support groups were for adults. Where did I fit in?

I wished for a guide, a kind of road map, that could tell me what to expect and help me understand what I could do to maintain a positive attitude, and manage the isolation and social challenges. At one of my low points, my mom said something to me that has stuck with me since then: “Clarissa, you have to take this adversity and turn it into an opportunity.”

I decided to follow her advice. Once my treatment ended, in 2009, I made it my mission to create a guide for teens and young adults with cancer that would walk them through the stages of cancer treatment and provide advice and resources to help them manage the challenges they face along the way. I thought, this guide is the perfect opportunity for me to help other young people with cancer and turn the adversity I faced into something useful.

I began my path towards writing the book by starting a blog, which I continue to update, at www.teen-cancer.com. I finally finished my book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, in August of 2015, and it was published that October. You can find the book on Amazon.com.au and it is available for purchase in either print or e-book format.
 
Since publication, Johns Hopkins Paediatric Oncology and Duke University Health System Teen and Young Adult Oncology have each begun to share the book with their new teen and young adult patients. I am grateful to have been able to use my experience to help other young people with cancer because it gives a sense of purpose to the difficult things I went through.

That is why I always encourage young people who have or have had cancer to take the adversity of the cancer experience and turn it into an opportunity, whatever that may be. It could be:

• An opportunity to take the time you are missing your friends in school to focus more on your schoolwork at home, and do it well
• An opportunity to spend more time on hobbies you enjoy
• An opportunity to learn from the adults you meet in the hospital (doctors, nurses, social workers, psychologists, hospital learning support staff, etc) and possibly get inspired by them to pursue a similar career path
• An opportunity to share your story at a fundraiser for cancer research or a cancer organisation you love, to let donors know why those causes are so important
• An opportunity to reinvent yourself and start fresh – trying new hairstyles, making new friends, getting involved in new activities, and doing things you may not have done before

When I set out to write my book, I never expected it would lead me to a career in research to find ways to improve the quality of life of young people with cancer and their families. But, I continue to find purpose in my experiences with cancer. I am very glad those experiences led me to where I am today, so that I may continue to make a difference, even if only in small ways.

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.