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.