Tuesday, 1 June 2004
Survivors of childhood cancer and their families are being asked to report on their past and present experiences in a research project investigating long-term psychosocial outcomes. This project is being carried out by the long-term follow-up team at the Centre for Children's Cancer and Blood Disorders, a department of the Sydney Children's Hospital, Randwick, in conjunction with the University of New South Wales through joint funding.
This project, the first of its kind in Australia, is helping to understand different reactions to a cancer experience so that more can be learnt about the possible on-going emotional and social impact that cancer might have on a child and their family.
'We are taking it from both a stress and thriving perspective,' said Jennifer Suneson, a PhD student with UNSW's School of Psychology. 'Generally research of this type tends to look just at the negatives, such as stress or anxiety. But our preliminary data shows that these people can also have very positive outcomes too.' Some of the positive outcomes include a greater sense of value of life, spirituality, or a closer relationship with family.
The researchers are seeking to recruit at least 500 childhood cancer survivors, who have been off treatment for at least three years and who are 16 years of age, or older, as well as their parents and their siblings.
The results of the project, entitled 'Cure is not enough - the long term psychosocial adjustment of childhood cancer survivors and their families' could be used to encourage different elements in future treatment. 'By improving our understanding of different reactions to a cancer experience, good and bad, we are then able to plan better follow-up care for current and future families.'
'At the moment we don't have any validated treatment models for survivors. This research will help better educate survivors, their families and those who treat them.'
This is part of the holistic approach taken by the Hospital's long-term follow-up clinic, which is headed by Dr Richard Cohn. This clinic, while providing the best individualised all-round health surveillance for childhood cancer survivors, also allows for new knowledge to be shared with survivors as it comes to hand. Information learnt by analysis of data collected on survivors allows modification of contemporary treatment protocols to benefit current patients.
Those who participate in the study will need to volunteer for at least one half hour questionnaire. Continued participation will involve completing a second questionnaire and possibly participation in an interview
'People are very positive about the study. They say that the psychosocial aspect of survival is something that has so far been neglected. Some also report that they feel good by being able to help in some way.'
If you, or someone you know, is interested in participating in this project, or if you require more information on the services provided by the long-term follow-up clinic, please contact Jennifer Suneson on 9385 1380 or email firstname.lastname@example.org. The results will be available within the next 12 months.
For Further Information Contact:
Amy McIntosh, Public Affairs Officer Tel: 9382 3578 - Mob: 0411 730 842
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