The team are very excited to share the findings of our Australian-first study on a parent-led dietary intervention to help re-establish healthy eating habits in young survivors of childhood cancer. In this blog post, we answer some of the most interesting and important questions about our project!

• Why did we develop ‘Reboot’?

 
Extraordinary improvements in how we treat children’s cancer means that over 80 per cent of children will successfully recover from their cancer diagnosis. The not-so-good news is that many young survivors of childhood cancer are at increased risk of serious diseases such as diabetes, obesity, and heart disease because of the long-term side effects of their cancer treatment. Although good eating habits after cancer treatment can help to protect young survivors from serious illness, cancer treatment typically turns children’s eating habits upside down. Common side effects of cancer treatment such as Nausea, vomiting often make eating difficult and children simply can’t ‘stomach’ most foods. After eating a very limited diet of simple carbohydrates and processed foods parents can find it very difficult to switch children’s food preferences back to healthier options like vegetables when their child’s cancer treatment finishes. This can make mealtimes very stressful for families and many parents can feel overwhelmed about how to manage fussy eating. To address this problem, we designed and evaluated ‘’, a four-week, four-session program delivered to parents by telephone soon after their child had completed cancer treatment. The key finding of our study was that parents reported feeling more confident in providing a healthier diet to their child after participating in our program. This means can benefit from
learning strategies on how to promote vegetables and fruit to children.

• What does ‘Reboot’ add to what we already know?

 
Our study adds important new knowledge about what we already know about the eating habits in young cancer survivors. World-wide, studies show that the diet quality of children who have finished cancer treatment is very poor. Most young survivors of childhood cancer consume excessive amounts of high kilojoule, low nutrient foods or ‘junk-foods’ and very little vegetables and fruit. Poor food choices after cancer treatment suggest that the negative impact of cancer treatment on children’s food preferences is difficult to reverse and can persist without early intervention. Currently, we don’t have any evidence-based dietary interventions for young cancer survivors in Australia.

• What findings did we find surprising?

The good surprise was how well parents of young cancer survivors responded to . Nearly all parents who started the program completed all four intervention sessions. When we surveyed parents after the intervention, all parents perceived the program as useful, and reported feeling more confident about how to offer and provide vegetables to children again. The not-so-good surprise was that fewer parents responded to our invitation to participate in a healthy eating program than we anticipated. We believe that the telephone format may have deterred some families from taking part. We know that families are very busy and fitting in scheduled telephone sessions can be particularly tricky. To help encourage more families to participate, we have turned into an online program, ‘-KIDS’ that parents can now complete in their own time with the benefit of optional telephone support.

• What excites us about ‘Reboot’?

We are excited that parents of young survivors found a distance delivered dietary program useful. Because cancer survivors live all over Australia, could potentially be delivered to all parents of young cancer survivors who are struggling with fussy eating.

• How does ‘Reboot’ contribute to Australian research?

In Australia, trials of a brief parent fruit and vegetable program in children not previously treated for cancer (‘Healthy Habits’) have achieved significant increases in children’s vegetable and fruit intake. As a next step, we sought to investigate whether this type of healthy eating program could be modified to benefit young cancer survivors and their parents.

• How important is this research project in Australia and overseas?
• is the first of its kind in Australia and the first intervention of its kind, world-wide, to specifically target strategies to promote vegetables and fruit intake in this at-risk population.

 

• What are the limitations of our project?

Limited resources meant that we could only promote to parents of young survivors treated at one hospital. This meant that we couldn’t advertise our program to all parents of childhood cancer in Australia and didn’t get as many parents enrolled in our program as we had hoped. It is still unclear if parents of young cancer survivors are interested in a dietary parent program and are likely to use this program if it was available in the community. The small sample size limited the diversity of our participants and we tended to have parents living in areas associated with a higher socioeconomic ranking than parents who decided not to participate. As a first step, we focused on evaluating whether was acceptable to parents and could be delivered using the same methods and design features evaluated in children not previously treated for cancer (‘Healthy habits’ program). Although we know that parents found it useful, we also don’t yet know whether it increases survivor’s intake of vegetables and fruit.

• What do we aim to do next?

The pilot of meant that we could explore what worked well and what didn’t work so well. We are using these exploratory findings to offer a modified version of to more parents of young cancer survivors. We are about to launch a randomised controlled trial to compare the impact of -Kids, an online and telephone delivered parent program, compared with no intervention, on young survivors’ intake of vegetables and fruit. This trial will use social media and community cancer organisations to advertise the study to potentially reach a greater number of parents. The use of a ‘wait-list’ control means that all parents will be offered the program. The only difference between parents who are randomised to the intervention group and parents who are randomised to the control group, is when they receive the intervention.

• Who funded our project?

We are very grateful to all our funders who have made this project possible. This study was originally funded through the Kids Cancer Alliance, The Cancer Institute NSW Sydney, Australia (Grant Number; 11/TRC/1-03). This project is also funded by a Cancer Council NSW Program Grant PG16-02 with the support of the Estate of Late Harry McPaul. 
 
 
If you would like to learn more about -Kids, visit our webpage at: https://www.behaviouralsciencesunit.org/reboot-kids.html or contact our team at reboot@unsw.edu.au. You can also read more about one parent’s experience in the Reboot program in an interview with the Kids Cancer Project at: https://www.thekidscancerproject.org.au/stories/march-2020/food-for-thought
 For more information about Reboot, please see here newsroom.unsw.edu.au/news/health/rebooting-healthy-eating-habits-child-cancer-survivors
​To read the paper in full click here
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In a new commentary piece on Oncology News, Dr Ursula Sansom-Daly and Associate Professor Carline Ford bring attention to important issues in scientific and medical research that have been barriers for women in research for far too long. Ursula and Caroline discuss the disparity in at-home caring duties between men and women, and how this is having an impact on publications and grant applications – especially now during the COVID-19 ‘lockdown’. Ursula and Caroline also discuss how the COVID 19 pandemic could be (and should be) the catalyst for systemic change in academia, and particularly for academic conferences.
 
Conference Travel
While attending and presenting at conferences is a core aspect of contributing to research, the travel aspect of this, that is almost always non-negotiable, makes conference attendance almost impossible for many early career researchers with young children, or those with elderly or unwell family members.
Conferences are vital for development of research ideas, presenting outcomes from research and have important networking opportunities for early career researchers to connect with international researchers for collaborations.
Despite changing societal expectations around the distribution of caring and domestic duties in the home, women still disproportionally carry the load of this work, making conference attendance even harder.
 
Are there any equitable solutions for this?
The obvious solution is for researchers with children to just bring their children along, but this isn’t always possible and presents a whole new area of problems to be dealt with. For example: what do the kids do while you’re trying to present a keynote speech? How do you network effectively with children interrupting? There are sometimes opportunities for researchers to access scholarships to help fund the extra costs associated with bringing family along, and very occasionally some innovative conferences have offered childcare as part of the registration fee (see pic). However, these types of support tend to be the exception rather than the rule, available to only a few lucky researchers.

Who is missing out on this?
It’s not uncommon for the costs of attending an international conference to exceed AU$3000. This sort of money is often not manageable for early career researchers who do not have travel budgets, or researchers who live in low-to-middle income countries. And while there is undoubtedly a career impact from not attending conferences while your colleagues are, it is really challenging to quantify this. Ursula describes this as similar to the phenomenon of Friday-night drinks in the corporate world: how do we know exactly what chance meeting we may or may not have missed out on by not crossing paths with a particular professor at a conference and having the opportunity to discuss potential collaborations?
 
“The sky does, in fact, not fall in when we stream a conference session over Zoom”
 
We have had good videoconferencing abilities for over a decade, but it has taken a global pandemic and closed borders to move conferences online. Conferences held recently, like the 2020 Victorian Cancer Survivorship Conference and the American Association for Cancer Research Annual Meeting 2020,  successfully welcomed virtual attendees from across the world just as the COVID-19 lockdown was becoming very real in Australia.
 
 Can the COVID-19 pandemic be the catalyst for change and a move towards gender equity?
Is it possible that the unexpected silver lining to this pandemic is that we are able to close the gap for women in STEMM? While we are all looking forward to face-to-face conversations and gatherings again, we are hopeful that the lessons we have all learned from working and networking remotely will lay the foundations for greater diversity in academia into the future.
 
 
To read the full article written by Dr Ursula Sansom-Daly and Associate Prof Caroline Ford, visit this link https://oncologynews.com.au/could-the-covid-19-lockdown-solve-one-of-the-persistent-barriers-to-gender-equity-in-research/

Childhood cancer can have enormous physical and psychological impacts on families. The financial toll of childhood cancer can also be significant. During treatment, families face out-of-pocket expenses which can contribute to their ‘financial toxicity’, meaning the financial burden related to a cancer diagnosis and treatment. Out-of-pocket expenses may include petrol and road tolls for travel to and from the hospital, parking at the hospital, food while away from home, and childcare for the siblings. The other thing which affects families’ financial toxicity is that parents commonly reduce their working hours after their child is diagnosed with cancer, which may mean their household income is also reduced.

Our study
Previous evidence suggests that financial toxicity and employment interruptions may continue even after a child successfully completes cancer treatment. Also, experiences with financial toxicity may vary according to different familial factors (e.g. having pre-existing savings).
We wanted to examine the longer-term financial toxicity and employment interruptions among parents of children who completed cancer treatment. We also examined how parents’ experiences differed for parents living across different socioeconomic status (SES) areas.

Our findings
We interviewed 56 Australian parents (50 mothers and 6 fathers) of childhood cancer survivors about their experiences with financial toxicity and interruptions to their employment. On average, children had successfully completed cancer treatment two years prior to the study (time since treatment completion ranged from 6 months to 10 years).
Two groups of parents were particularly vulnerable to ongoing, unwanted financial or employment impacts: 1) families living in low SES areas reported ongoing financial toxicity after childhood cancer; 2) mothers, particularly those who were on, or recently returned from, maternity leave when their child was diagnosed with cancer, experienced ongoing employment impacts.
 
        SES and financial toxicity
Presumably for families living in low SES areas, the income loss associated with reduced working hours, coupled with out-of-pocket costs, were exacerbated by their lack of pre-existing savings and assets. While financial support from families, communities, non-profit organisations and government helped, these payments did not prevent or entirely relieve financial toxicity for these families.
“When we got home we had to buy a wheelchair, we had to buy crutches…It’s put a massive financial burden, and still does… We’ve been home for, what, sixteen months, so there’s still a lot of money to spend on side effects of her treatment.” (Mother of a childhood cancer survivor)
Family SES should be taken into account when assessing and determining the financial toxicity associated with childhood cancer.
 
        Mothers and employment
Mothers who were on maternity leave when their child was diagnosed and those who recently returned to employment after maternity leave reported that they wanted to work but were unable to find suitable employment after treatment completion. A large issue for these mothers was that potential employers thought they had been out of work for too long. The other issue, was that mothers needed employment that would allow flexible working hours and arrangements to work from home in order to attend medical appointments and attend to their child’s other medical needs.
 
“It was probably two years by the time [my son]…could go to day care and not be sick all the time and me go back to work…Basically being out of the [profession] too long apparently and/or too senior…So it’s been incredibly frustrating trying to get work.” (Mother of a childhood cancer survivor)
 
The way forward
Even families in a high-income country with universal healthcare can experience detrimental financial and employment impacts of childhood cancer several years after treatment completion.
Clinical staff could more consistently assess families’ financial toxicity and refer to financial counsellors to assist with financial decision-making. This referral could occur during treatment completion as a potential preventative measure.
Flexible workplace agreements appear important for parents of children with cancer, and may be particularly important for mothers returning to work after their child’s treatment completion. Cancer-related disruptions are likely to continue for years after treatment completion. Organisations should therefore offer flexibility to parents where possible (e.g. working from home and time in lieu).
These measures are essential to ensure we avoid long-term financial and employment inequalities between families with and without childhood cancer.
 
This blog post was written by Dr Lauren Kelada. The original manuscript has been published in Pediatric Blood & Cancer at: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28345

The long-term impact of cancer: The impact of treatment for childhood cancer is felt well beyond cure. Survival rates for childhood cancer have significantly improved over recent decades. However, there is growing evidence of treatment-related health conditions that compromise the quality of life and health of childhood cancer survivors. These may include second cancers, organ dysfunction, cognitive and psychosocial difficulties, developmental delays, and in some cases late mortality.
 
Managing health after cancer: Survivorship care services are available for survivors to effectively manage these long-term health problems. Research shows that survivors who are engaged in long-term follow-up care have better physical and psychosocial outcomes in childhood cancer survivors. Yet many survivors don’t receive follow-up care leading to missed opportunities for surveillance and early intervention, including screening and healthy lifestyle education). Poor engagement in follow-up care indicates that current models of survivorship care need improvement.
 
New models of survivorship care: The success of any model of survivorship care requires aligning with key stakeholders’ needs and preferences, including survivors and healthcare professionals. In our recent survey study, we aimed to learn about survivors’ engagement in survivorship care, barriers to accessing follow-up care, their satisfaction with care, and preferences for receiving future care. To achieve this, we surveyed 633 participants in total; including 187 parents of young survivors, 251 adolescent and young adult survivors (AYAs) and 195 older survivors from 11 hospitals across Australia and New Zealand. Of these survey participants, 151 also completed an optional telephone interview to help us learn more in-depth about their experiences and preferences.
 
Satisfaction with care: Worryingly, up to 70% of long-term survivors were not engaged in follow-up care. Engagement in follow-up care was significantly lower in older survivors of childhood cancer, yet the number of cancer-related health conditions they reported were much higher. Survivors who reported receiving follow-up care were more satisfied with their care than those not receiving cancer-related care.

Barriers to survivorship care: Survivors reported many barriers to accessing survivorship care, most commonly i) 67% had a poor understanding about the need for, or availability of, follow-up care, ii) 65% experienced logistical barriers such as not having appointment reminders, and iii) 57% reported that the costs associated with attending follow-up clinic prevented them from going, including the cost of travel or taking time off work. Another important barrier was the emotional challenge of returning to the hospital where they, or their child, was treated as it brought back painful memories for them. Further analysis showed that survivors reported a great number of total barriers to accessing care if they were older, a longer time from diagnosis, and lived further away major cities. This suggests that older and more geographically isolated patients need more support to access survivorship care.
 
Preferences for future care: even though survivors reported many difficulties to accessing survivorship clinics, most preferred to receive specialised follow-up care delivered through oncologists, survivorship nurses and multi-disciplinary teams. Fewer survivors preferred their survivorship care to be delivered through community based follow-up, specifically general practitioner’s (GP). Survivors seemed to have low confidence in their GP’s ability to offer survivorship care, possibly due to their GP’s lack of involvement during their cancer treatment, and the strong connection many establish with primary treating oncology team. This represents a key challenge for healthcare systems, as survivorship clinics are under resourced to manage the growing population of long-term survivors of childhood cancer.
 
Importance of these findings: Our findings offer insight into how best we can deliver survivorship care, to cater to survivors’ and parents’ preferences and to ensure that the survivorship needs of this vulnerable population are adequately met. Given that many high-risk survivors are disengaged from cancer-related care, identifying patient preferences can be used to re-engage survivors who should be receiving cancer-related follow-up. Future research should evaluate healthcare professional preferences to ensure system- and physician-reported barriers are also considered in developing an optimal model of care for survivors of childhood cancer. Aligning survivors’, physicians’, and system needs will remain a challenge in developing a preferred and yet sustainable model of care.
 
This blog post was written by Dr Christina Signorelli and Mr Joe Alchin. The original manuscript has been published in BMJ Supportive & Palliative Care Journal at: https://spcare.bmj.com/content/early/2019/11/11/bmjspcare-2019-002001

In 2007, I was 13 years old. Instead of starting high school, I was starting a 2 ½ year treatment for relapsed Acute Lymphoblastic Leukaemia (ALL). The whole goal of the first year of my treatment was to get my white blood cell count down to 0, or at least as close to 0 as possible, to ensure any leukaemia cells were not left hanging around. That meant that I essentially had 0 immune system for more than one year. With no immune system, you learn very quickly that the #1 rule is to AVOID ALL THE GERMS. That meant I had to avoid attending school, or seeing friends or relatives who had any symptoms of a viral or bacterial infection. One of the second things you then learn is how much you took for granted  going to school or work.

As I got towards the end of my treatment, in early 2009, I was inching my way closer to freedom and returning to school. But, my plans were thrown out the window as the H1N1 influenza (also known as Swine Flu) pandemic took over the US (where I lived at the time). After discussion with my doctor, my parents and I decided that I should stay home and avoid attending school for a few more months. This was perhaps the most difficult time because I was finally physically feeling better, so I felt the limitations even more.

11 years later, all of the hype around social distancing feels strange because I’ve seen how cancer patients, survivors, and anyone living with an immuno-compromising condition, have been social distancing pros for years already. It’s just that social distancing wasn’t instagram-able until the rest of the world had to do it too. So, if you’re struggling with the idea of social distancing and how you’ll cope with the foreseeable future in isolation, reach out to someone with experience (Just not in-person!). I’m sure they’ll have lots of useful advice to share!

In case you don’t know anyone with this kind of expertise, or if you’re newly living with a socially-limiting illness yourself, I’ll share with you my top 5 pieces of advice for how to manage life at home, on your own.

1. Have an accountability buddy or find ways to hold yourself accountable for your work. While I was on treatment, I was lucky to have a home/hospital tutoring program provided by my county in the US. This meant that they sent a teacher to my school to pick up my assignments from my school teachers, spend 6 hours per week in my home and go through new lessons with me. For the other 34 hours, I had to get through assignments on my own. But, expecting my teacher’s visit on the same days each week meant that I had someone holding me accountable. Alternatively, if you don’t have someone to hold you accountable, consider setting some deadlines for yourself.
2. Make a schedule for yourself – including time for things you enjoy or other tasks that you need to do around your home. Days without structure can seem fun at first, but soon they become frustrating and can contribute to a sense of hopelessness/lack of accomplishment. On the other hand, too much work can burn you out. Your brain will take some time to acclimate to being on its own (it’s amazing how much harder it is to work when you’re not surrounded by other people working). You might also have distractions around you to navigate. Consider these things when making a schedule for yourself, and possibly consult your teachers or supervisors. Making a schedule will also help you protect your personal time so you can do some things you enjoy in your free time.
3. Ensure you plan at least one achievable task/goal each day. When you’re stuck at home, it can be really helpful to get some sense of accomplishment each day, to remind you that you are making good use of your time. I always found it useful, as I started each day, to choose one achievable task that I knew I could and would get done that day. That way, whether fatigue limited my work hours or chemo-brain limited by working speed, I could still say I got something done.
4. Pay attention to your feelings and talk about them – virtually with friends, or in person with people living with you. Being at home 24 hours per day, 7 days per week gets old. Really fast. You’ll find yourself having moments of loneliness, frustration, boredom, lack of focus, etc. Pick up the phone and call a friend or relative. Use your video call service of choice to connect with your workmates or classmates. You can be physically isolated but you don’t have to be socially isolated! Also, remember that distancing and isolation don’t last forever. Whether you have to make it through flu season, a pandemic, or 2.5 years of cancer treatment, remind yourself that you just have to keep moving forward.
5. Choose a single space in your home as your workspace. When I was sick, it was my parents’ dining room table. We extended it out as far as it would go, then I took over half of it. Pick a space with as much natural light as possible, and preferably with a window nearby – it’ll help you keep awake and focused. Try to separate your work space from your leisure space where possible – like I try to limit my use of my kitchen table to work and meal times.

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Instead of letting this adversity become problematic, it’s a great time to consider how we can find new opportunities - opportunities for each of us to learn more about ourselves, spend more time with those we live with, learn new hobbies or skills, test out new ways of working and getting things done, or helping others who may be struggling. By social distancing, we may find better ways of getting and staying connected to one another. Most importantly, we won’t take for granted how lucky we are when we can get up in the morning and leave our homes to go to work or school.

​Dr Lauren Kelada (team leader of the Family Systems and Relationships team at the BSU) recently arrived home from a trip to Norway. Dr Kelada visited the Frambu camp for siblings of children with rare disorders to collaborate on her project, SibStars.
 
SibStars aims to better understand siblings’ experiences of growing up with a brother or sister with a chronic illness, to identify the factors which impact upon siblings’ wellbeing, and to identify siblings’ information and support needs. Qualitative interviews and questionnaires are offered to parents and siblings to obtain insights into their needs and challenges.
 
During the trip to Oslo, Dr Kelada and her collaborators completed interviews with 16 siblings attending the camp. The interviews will be compared with previous interviews with Australian siblings, and will form an exciting cross-cultural study.
 
Dr Kelada has also formed an ongoing collaboration with Professor Krister Fjermestad and Professor Torun Vatne from Frambu and the University of Oslo to help adapt their SIBS intervention into a digital intervention which will be tailored for the particular needs of Australian siblings.
 
In addition, Dr Kelada filmed an interview for SIBS’ website with Prof Fjermestad. You can check it out here: http://sibs.frambu.com/index.php/2020/02/25/intervju-med-lauren-kelada-fra-the-behavioral-science-unit/  

Education and training
I completed a BSc Psychology, Queens University Belfast and MSc Applied Psychology at Trinity College Dublin. Before joining the BSU I worked in the disability sector supporting adults and children in community and residential settings, as a case manager, and as a research assistant for The Successful Ageing in Intellectual Disability (SAge-ID) Study at UNSW.


What is your current role?
I am a Research Assistant in the Ethics and Genetics team at the BSU. 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. In addition, I am working on the GenPact study which aims to better understand families’ experiences when a child is offered cancer-related genetic testing.


What are the best parts of your current role?
The best part of my current role is knowing that the work I do contributes to a wider aim of improving the treatment and psychological outcomes for children with high risk cancer and their families. I particularly enjoy interviewing parents and healthcare professionals as I find it fascinating to hear the different perspectives and experiences of precision medicine.


What are the most challenging parts of your role?
It can be challenging to hear the difficult day to day reality patients and their families face when dealing with high risk cancer. It can be difficult to reconcile that the study may not directly benefit these families who graciously contribute to our study but instead may benefit future cancer patients.


Where do you see yourself in five years’ time?
In five years’, time I would like to be studying to be or working as a clinical psychologist. I hope to one day work in a clinical role with a research element and contribute to improving the psychological wellbeing of others.
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What advice would you have for someone wanting to follow a similar path in terms of their study/career?
My advice to be would be focus on your academic studies but not to forget about gaining relevant experience in your area of interest. I believe I have developed invaluable skills through working with several different client populations and professionals in my career. I would encourage people to reach out and seek advice from professionals who currently work in the role/industry they aim to work in. In addition, it’s important to always have willingness to seek out learning opportunities and upskill through attending training courses, workshops and lectures.

Children with high-risk cancers tend to have limited treatment options, with often devastating consequences. Precision medicine, which uses new technologies to better understand the causes of each child’s cancer and to test new treatment options, is offering new survival hope for children and their families.

As with any radical shift in medicine, challenges can emerge as healthcare professionals try to add new approaches into their practice. In this study, recently published in the Journal of Personalized Medicine, we wanted to better understand the challenges faced by doctors and scientists working on PRecISion Medicine for Children with Cancer (PRISM), an Australian precision medicine program for children with high-risk cancers (more information about the trial is available here: http://www.zerochildhoodcancer.org.au/page/4/about).

Key findings
In this study, we interviewed a broad group of doctors (including paediatric oncologists, pathologists and genetics professionals) and scientists (including laboratory scientists and bioinformaticians) working on PRISM.
 
Most professionals we interviewed were excited about the potential of precision medicine over the long-term, but were mindful of the importance of managing families’ expectations in the early stages of the trial. Key challenges for doctors, especially oncologists, included sharing genomic results with families. Doctors who did not specialise in cancer genetics told us that they felt unsure talking with families about results which might suggest that cancers ‘run in the family’. From our conversations with scientists, the overwhelming impression was that being part of such a ‘high-stakes’ trial made them feel new emotional pressures and experience new workload demands.  
 
We will use the evidence from this world-first study to inform our understanding of how best to support doctors and scientists striving for new treatment options for children with cancer.
     
This paper was led by Brittany McGill and can be accessed here at the Journal of Personalized Medicine: https://www.mdpi.com/2075-4426/10/1/9

Adolescents and young adults (AYAs) aged 15-39 with cancer face developmental, psychological, and medical-related challenges. When cancer treatment is not successful and cure becomes unlikely, they can be especially at risk. There is little guidance to define and support best-practice communication with AYAs towards end-of-life.
We conducted a narrative review to address this research gap. Overall, we found that evidence points to the importance of introducing palliative care teams earlier. Additionally, it is important to explore AYAs’ preferences around end-of-life issues in a repeated, consistent manner; this offers multiple ‘openings’ to these difficult conversations, and also allows for the fact that AYAs’ preferences can and do change over time as their medical and support needs change. Our review also highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones.
We highlighted a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best had with AYAs. These included:

1. When: Introduce palliative care team members earlier during treatment to facilitate opening conversations to end-of-life concepts prior to disease/symptom-related ‘crises’ or the end of active (curative) treatment.

By introducing palliative care teams earlier, AYAs and their families have time to develop relationships with these new health-professionals prior to formal changes in care.

1. Who: Ensure the wider multidisciplinary team is confident and adequately skilled to support end-of-life conversations with AYAs.

Given that AYAs can develop relationships with various different team members involved in their care, it is important that all team members – whether it is the doctor, social worker, radiation therapist, or ward nurse – feel comfortable to talk to AYAs in age-appropriate ways if and when the young person is ready to talk about end-of-life issues. Taking this team approach is also consistent with a developmentally-appropriate AYA model of care.

1. What: Tailor the content of end-of-life conversations to the individual patient, and the unique context of the particular time point the conversation is being introduced.

There are many important topics to broad with AYAs who may die from their disease, such as preferences for pain/symptom control, ongoing active/palliative treatment, and potential place of dying/death. These topics can include thoughts and preferences about which family and friends a young person would like to have visit/close, and when (e.g., do they want visitors when they are sad or feeling unwell?); or what activities they really value and make them happy in their day-to-day lives (are there ways we can continue to make these possible as their disease progresses?). Opening conversations focused more on the identity of the AYA patients sitting in front of you (who are you, and what’s important to you?) can be a useful way to set up some of the more difficult/confronting conversations later on.

1. How: Use structured advance-care planning tools to scaffold conversations, and as a mechanism to facilitate communication between AYA patients, their families, and members of the multidisciplinary care team.

Communication tools such as the American Voicing my ChoicesTM may be useful in supporting discussion around different topics at different times. These tools can also be useful in ‘externalising’ the discussion in some ways – clinicians can refer to the fact that the tool was developed together with other young people, so the patient sitting in front of you may or may not find the topics helpful. Studies are underway, including here in Australia, to tailor this American tool to be culturally- and linguistically-appropriate to different countries.
 
Numerous gaps in the evidence base remain. For example, there is a lack of data to guide practice when disagreement between AYAs’ and their parents’ preferences exists. However, based on our research synthesis, we proposed a new model (below) to support clinicians and researchers to better understand how individual, familial, and socio-cultural factors impact end-of-life communication with AYAs in clinical settings. We hope this model will continue to spark new research questions and support clinical advocacy for AYAs with cancer and their families facing end-of-life.
Figure 1: Model of the developmental context for end-of-life communication with AYA cancer patients.
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