To guide the development of the Delta decision aid, we interviewed 25 parents of a child recently diagnosed with cancer and 5 adolescents recently diagnosed with cancer. In following Elwyn and Miron-Shatz’s decision-making model, we examined participants’ experiences and preferences of the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis, from which we identified four main themes.
 
1) Information overload but poor understanding
Parents recalled receiving large amounts of information, but still felt that that were not well-informed. This left many parents feeling unqualified for decisional involvement. This indicates that information provision alone is not enough to facilitate decision involvement.

2) Information provision to meet individual needs/preferences
Poor understanding or unmet information needs led many parents to seek additional information, especially online. All parents emphasised the importance of being able to ask questions to their treating team. Being able to ask questions also helped parents feel empowered and part of the decision-making team.

3) Involvement in treatment decisions
Most parents wanted to be involved in major medical decisions for their child. However, many left these decisions to their oncologist because they trusted their oncologist to make the “right” decision, or because they felt they had no choice but to trust. Parents highlighted the benefit of being given opportunities for minor decisions (i.e., decisions that had the same outcome regardless of choice) for both themselves and their child.

4) Decision satisfaction outcome bias
All parents were largely satisfied with their treatment decision, but typically justified this because of the positive outcome of their child’s treatment (e.g. remission). Parents’ decision satisfaction did not appear to be based on the quality of their decision-making process.
​
Adolescent findings
Due to sample size and difficulty in obtaining in-depth responses, we were unable to conduct a thematic analysis on the adolescent interviews. However, data suggests that adolescents want to be involved in the deliberation of decision, but not necessarily take the lead in determination of the decision.
 
The findings of our study highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice. We conclude our study with a modified conceptualization of Elwyn and Miron-Shatz’s decision-making model.

You can find the full manuscript of this study here: https://doi.org/10.1007/s00520-019-04728-x

Robertson, E. G., Wakefield, C. E., Shaw, J., Darlington, A. S., McGill, B., Cohn, R. J., & Fardell, J. E. (2019). Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions. Supportive Care in Cancer. 

​Education and training
I completed a Bachelor of Science (Psychology) at the University of Sydney and a Graduate Diploma of Psychology (Advanced) at Monash University. I have always been interested in people, the human mind and what motivates people to do the things they do. I am particularly interested in working to improve the psychological wellbeing of young people, as I believe this is the most vulnerable period of life and it is important to be heard and guided through this difficult stage. I am also interested in mindfulness and how it can be used to help all people improve their relationship with their thoughts, feelings and physical experiences. I have worked several different jobs in recent years including as a Telephone Crisis Supporter at Lifeline and with Headspace delivering mental health and wellbeing programs for high school students.
 
What is your current role?
I am a Research Assistant in the Ethics & Genetics team of the Behavioural Sciences Unit. I am currently working on the PRecISion Medicine for Children with Cancer (PRISM) psychosocial sub-study. This study is investigating patients’, parents’ and healthcare professionals’ views and experiences of taking part in a personalised cancer medicine study for children with a high-risk cancer where the chance of cure with standard treatment is low. The study aims to understand the psychological implications of taking part in a precision medicine trial.
I am also working on SibStars, a study investigating the quality of life, family relationships and information needs in siblings of children with a chronic illness. Siblings of children with a chronic illness are often overlooked, however, their psychological wellbeing can be negatively impacted by changes in family dynamics and increased caretaking responsibilities. This research aims to develop a better understanding of their experiences and needs, and hopefully lead to a bolstering of protective factors and more positive outcomes for all siblings of children with chronic illnesses.
 
What are the ‘best’ parts of your current role?
One of the best parts of my current role is getting to work within a multidisciplinary team. It’s exciting to work with people from many different backgrounds and professions, as they all have different perspectives, experiences and knowledge to draw on.
I also enjoy coming to work everyday and having different tasks to work on. No two days are the same and there is always a new challenge to be tackled. I am motivated by the fact that there are always new skills I can learn and ways I can improve myself and the work I produce.
Lastly, it is extremely rewarding to be involved in research that aims to improve the lives of those dealing with the devastating effects of cancer. It is certainly motivating, yet humbling, to be contributing to such a great cause and hopefully making life easier for the patients and families affected by cancer.
 
What are the most challenging parts of your role?
It is often challenging to be confronted with the harsh reality of the patients and their families dealing with cancer. It is difficult to accept that much of the research we do is designed to find better treatments for future cancer patients and may not be of any benefit to current patients who are giving their valuable time and energy to contribute to our studies.
 
Where do you see yourself in five years’ time?
In five years’ time, I would like to be working as a psychologist or completing a PhD in one of my interest areas in psychology. I am passionate about both clinical and research psychology, so would be happy working in either domain to improve the wellbeing of individuals and the wider community.
 
What advice would you have for someone wanting to follow a similar path in terms of their study/career?
My first piece of advice would be study hard and achieve the best you can academically, as this will put you in the best position to take any path you want.
Secondly, try and gain as much experience as you can in your field. Volunteering is invaluable for getting a taste of what it’s like to work in your field and developing practical skills that aren’t offered much in school or university. Also, it’s a great way to develop your interpersonal skills and make contacts that can provide other opportunities for you in the future. Even if these experiences aren’t exactly the type of work you’d like to be doing, most professional skills are transferrable, and these experiences may spark new interests and opportunities you didn’t expect.
Lastly, I would advise that if you’re not sure what to do, then just do something. The best way to work out what your interests and passions are is by trying different things, whatever they may be, until you find where you belong. And while that may take a long time, the skills, relationships and experiences you accumulate along the way will be more than worth it. 

Since September 2018 I have had the privilege of participating in the PLuS Alliance International Interdisciplinary Researchers (PIIR) program, which connects early career researchers from King’s College London, Arizona State University, and the UNSW Sydney. The program is designed to facilitate international, interdisciplinary collaboration, and teach specific (e.g. grant-writing) and non-specific (e.g. strategies for enhancing creativity) research skills.
 
As part of the program I attended a week-long workshop at King’s College London in January 2019. Our morning sessions were led by Professor Barry Bozeman, in which we explored the common challenges of research collaboration, including authorship (discuss early, always). Professor Bozeman also covered styles of research collaboration, with ‘consultative collaboration’ argued to be the most effective. Consultative collaboration is a high-energy but high-reward approach that involves whole team communication, a high level of trust between collaborators, a commitment to open and transparent disagreement, and recognition of diverse values and objectives. 
 

​We also participated in a four-day ‘ideas lab’ facilitated by Toby Scott from ‘KnowInnovation’.

Toby skillfully led us through dynamic group-based exercises with the end goal of developing new and innovative research ideas. The value of the workshop went beyond the skills taught by Toby; the process of the workshop illuminated, in real-time, the challenges of working in groups to develop new ideas.
​
It was particularly interesting to see how the human brain is wired to dislike novelty and the unexpected. It is extremely challenging to inhibit judgement and ‘let the ideas flow’.  

​Several interesting project ideas emerged throughout the workshop, across the fields of global health, psychology, sociology, climate science, and medicine. I look forward to seeing what develops over the next six months as the teams tackle the inevitable challenges of global collaboration.  

Brittany McGill is a clinical psychologist and PhD candidate in the Behavioural Sciences Unit.
 

Hi, Lauren here! I work as a research officer for the Mental Health Team at Behavioural Sciences Unit. Most work days you can find me at the Kids Cancer Centre, working away on various studies and associated tasks. Recently, I have had the absolute honour of singing for Starlight TV in the Sydney Children’s Hospital (SCH) Starlight Express Room with Matt Ralph, music therapist at SCH, fabulously accompanying me on guitar and harmony vocals.  

I have always had a passion for the performing arts, particularly singing. Before moving to Sydney four years ago, I lived in Wagga Wagga and regularly performed in a variety of formats including musical theatre, radio jingles, TV commercials, live band performance, acoustic gigs and charity concerts.
​
I hadn’t really been singing and performing for the last four years but after a colleague introduced me to Matt, I was asked to sing for Starlight TV that same day and have been asked back for Starlight TV’s Friday live sessions. Music brings me such joy and it’s so nice to be able to share that joy in a meaningful way. When people thank me for singing, my response is “Thank you!” because they have given me an opportunity to sing and an outlet for my creative side that doesn’t always get a chance to be expressed. I honestly get so much positive energy through the act of singing that it is such a positive experience for me too. In fact, there is research to support this! Some studies have reported that singing can contribute to and improve personal and social well-being (Clift & Hancox, 2001; Joseph & Southcott, 2014; Weinberg & Joseph, 2017 [see also: https://www.abc.net.au/classic/features/how-music-works-what-happens-to-your-brain-when-you-sing/10115596])

My favourite experience so far has been dressing up as Elsa from ‘Frozen’ and visiting the wards. I also contacted a cookie company called Dough Re Mi to see if I could purchase their ‘Frozen’ themed cookies to give out to the kids. The company is based in Wagga Wagga and the response I received from the owner, Meredith, was overwhelming! After hearing what the cookies were for she very kindly donated them to the children of SCH. It was a special added extra to be able to visit the wards in costume and hand out the most beautifully decorated cookies to some very excited faces.
​
A big thank you to Matt Ralph for giving me this opportunity and thank you to my supervisors and colleagues who have been very supportive in allowing me to escape the office from time to time to indulge in the joy of music!
 
References
Clift, S.M. & Hancox, G. (2001). The perceived benefits of singing: findings from preliminary surveys of a university college choral society. The Journal of the Royal Society for the Promotion of Health, 121(4), 248-256.
Joseph, D., Southcott, J. (2015). Personal fulfilment through singing in a University of the Third Age Choir. International Journal of Lifelong Education, 34(3), 334–347.
Weinberg, M. K., Joseph, D. (2016). If you’re happy and you know it: Music engagement and subjective wellbeing, Psychology of Music. doi:10.1177/0305735616659552

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.
​
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.
​
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).
​

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.
​
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?
​
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