Behavioral Sciences

Kids with Cancer Foundation is the Naming Rights Sonsor of

the Behavioural Sciences Unit.

Sydney Children's Hospital


Kids with Cancer Foundation’s continual funding since 1999 of Sydney Children’s research positions assisted Associate Professor Richard Cohn, when in 2001 he founded the Behavioural Sciences Unit, recognising that until a cure for all childhood cancers has been found, it is our mandate to improve hospital initiatives to better support patients and their families from diagnosis to survivorship and bereavement. He has championed the importance of research studies which cover all psycho-social and behavioural aspects of paediatric cancer and worked to translate these research findings into clinical practice within the hospital.

Kids with Cancer Foundation's support helped develop the service and the research program for which we are very grateful.  A/Prof Richard Cohn

Kids with Cancer Foundation is the Naming Rights Sponsor of the BSU, and support of these vital positions continues today. 

1749996 Dr Claire Wakefield is the Research Program Leader, Claire's salary is funded by Kids with Cancer Foundation.
As a result of support from the Kids with Cancer Foundation, the Behavioural Sciences Research Programs Leader has been able to oversee an expansion in productivity and programs. Several key studies have been expanded from single site studies to large, nation-wide projects, and are now considered benchmark studies that are leading Australian and international research in Paediatric Psycho-Oncology. Under the watchful eye of Dr Claire Wakefield, the Behavioural Sciences Unit has been able to double the number of full-time research staff employed this year. Thanks to Kids with Cancer Foundation's support, the Kids Cancer Centre - Research Facility now has tailored facilities improving the novelty of research and the growth of clinical services which we can now provide to local and rural families affected by childhood cancer.
On the 22nd & 23rd September 2016, the fifth Sydney Cancer Conference was held in Sydney. A/Prof Claire Wakefield presented a great talk spanning the range of projects the Behavioural Sciences Unit is currently undertaking in the area of genetics and cancer, discussing the importance of genetic information to families during and after treatment, current unmet needs regarding the communication of this information, and the psychosocial implications of, and perspectives regarding, new genetic technologies in paediatric cancer.
Excitingly, members of the Behavioural Sciences Unit team picked up not one, but two (!) awards at the closing ceremony, a huge achievement. Sarah Ellis’ poster entitled, ‘Pilot evaluation of a tailored sleep intervention for parents of children with cancer’ and Alistair Lum’s mini oral presentation, ‘Adding childhood cancer treatment to school: Accounting for the social and personal implications’ both received prizes, great work team! See the BSU Blog:
Sarah Ellis  Sarah Ellis, Research Officer & Ursula Sansom-Daly, Clinical Psychologist Ursula Sansom-Daly
Recapture life: Resilience and Coping skills for young People and their families To Live well Following cancer  
The Behavioural Sciences Unit has developed a new service, "Recapture Life" which aims to support young people and their families in the first 12 months after finishing cancer treatment. Recapture Life involves six, weekly, group-based sessions that are delivered using internet-based videoconferencing (like SkypeTM). Recapture Life will provide young people with a place to discuss some of their experiences in the first year off-treatment, and discuss ways to cope with some of the challenges that can come up. This new intervention is currently being evaluated against both a peer-support control group, and a waitlist control, in a national, multisite, randomised controlled trial involving 11 sites across 5 states in Australia. This study will help us determine what kind of psychosocial support is the most useful for young people who have recently finished cancer treatment. We hope to use this information to ensure that the next generation of young people with cancer are supported the best way possible after cancer treatment.  
Cascade:Helping parents cope better when their child finishes cancer treatment. 
Our team has developed an online program named 'Cascade' (Cope, Adapt, Survive: life after CAncEr') to improve parents' quality of life after cancer treatment. Cascade is delivered by a psychologist in six weekly, 90 minute videoconferencing modules, with 3-5 parents/carers per group. We are now commencing a phase 11 randomised trial will assess the efficacy of Cascade in improving quality of life in parents/carers of young survivors compared to an online peer support group and a waitlist control. The program also aims to reduce parent/carer depression and anxiety, and improve parenting competence, family functioning and child and sibling wellbeing.

Grandparents: Finding ways to help grandparents help their families. 


Our team has been the first in the world to assess grandparent's levels of distress and identify strategies to help them to help their families better. Using what we have learned from our first grandparent study, we are currently developing resources specifically for grandparents, to help them to feel more informed about their grandchild's cancer diagnosis, and to help them to look after themselves while their grandchild is being treated. We hope to show that by providing more information and support to grandparents, we will improve their quality of life and enhance their ability to support their families. 

Long Term Follow Up 


Developing a model of care for the long term follow-up of childhood cancer survivors.  Our team's body of work aims to systematically develop an evidence-based model of best care for the LTFU of paediatric cancer survivors by first investigating the needs, preferences, and barriers to care among survivors of childhood cancer and their parents (if under the age of 16 years). This will be achieved through a national study involving all Australian and New Zealand paediatric oncology centres (11 sites) and a sample of over 1,000 survivors. In addition, an audit of each site's current LTFU model of care will be administered and used as a predictor of survivors' satisfaction with care, quality of life and adherence to long term follow-up attendance and recommendations.

What can GPs do to help us care for child cancer survivors?


A systematic review of the literature pertaining to GPs' perspectives of their role in cancer care has been completed. This evidence-base will help to determine the barriers interfering with GPs preparedness to care for childhood cancer survivors and form the basis of the next step in our translational work. The findings of the GP study will be integrated with the findings of the LTFU models of care study, so that a
cohesive, multi-faceted model of care may be developed and considered feasible prior to making national recommendations for change and the implementation of a new model of care.

Neuropsychology reports 


This study examined parent and teacher understanding, implementation, perceived effectiveness and barriers to implementation of recommendations made in post-treatment neuropsychological reports of survivors of childhood brain tumours. Despite reasonable levels of understanding, high perceived effectiveness and low perceived difficulty to implement recommendations, less than half of all
recommendations were implemented post-assessment. Collaboration between the patient, teacher, parent and neuropsychologist is vital to ensure optimal outcomes for survivors.

Taste and smell  
This study aims to assess taste and smell function in a group of childhood cancer patients that have recently completed treatment. Reduced taste, altered taste or smell dysfunction, as a result of the chemotherapy and/or radiotherapy has been suggested to play a major role in altered food intake. Although taste and smell receptors can regenerate every 10 and 30 days respectively it is unknown
whether the intensive therapy causes long lasting damage to these patient's receptors. It is thought that taste and smell dysfunction may be contributing, in-part, to the poor feeding practices some childhood cancer patients display after recently finishing cancer treatment, including inadequate fruit and vegetable intake and preferences for high fat foods.
With childhood cancer survivors at risk of such conditions as obesity, type II diabetes, cardiovascular disease and osteoporosis, all manageable with dietary interventions, it is important to understand the contribution of a child's (possibly altered) taste and smell function after treatment.
Diet quality 
This study aims to assess the diet intake, diet quality and feeding behaviours of childhood cancer survivors recently offtreatment. The information from this study will potentially help us to develop an intervention that addresses diet quality and eating behaviours after childhood cancer treatment. 
Energy Kids 
Childhood cancer patients' nutrition is an important aspect of care both during and after the completion of cancer treatment, though nutritional issues differ significantly across these points in the cancer trajectory. Energy Kids is a newly developed intervention that addresses diet quality and eating behaviours after the completion of childhood cancer treatment. Adult survivors of childhood cancer are
known to be at greater risk of lifestyle diseases, such as diabetes, heart disease, high cholesterol and obesity. As such, improvements in poor diet quality after treatment and modification of feeding behaviours is important. Ultimately, this study aims to design better ways of helping families to help their children to eat well after treatment.

Learn more, visit: Behavioural Sciences Unit 


We urge you to consider the children in a hospital near you.  Please donate, post cheques to: Kids with Cancer Foundation, PO Box 135 Westmead NSW 2145 or for credit cards: free-call any donations to 1800 255522, and we guarantee that 100% of these direct donations will be passed to families & hospital cancer wards, or use this Donate now button or at the top of the page. 

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