The Project Team met three times in 2016 and developed a list of existing brain tumour information resources, and identified two possible future information resources for brain tumour patients and their families and carers.
Work commenced on seeking feedback from brain tumour
patients and carers/friends on the two possible future resources including
obtaining Ethics Committee approval to hold six Focus Groups with patients and
carers. The Focus Groups will enable
participants to advise the Project about the suitability of the proposed
information resources. Feedback is also
being sought later in 2017 from medical staff about the proposed new resources.
In 2018, translation of new information resources initially
into 5 languages will take place. This
will be followed, with translation into another 5 languages and we expect the
new materials to be available in 2019.
We will be seeking input from our members, and from brain tumour patients, families and caregivers over the coming months to identify what information resources are most needed by people with tumours from culturally and linguistically diverse (CALD) communities.
The BTAA CA Project Steering Committee members are: Dr Danette Langbecker (U Qld), Dianne Legge (Austin Melbourne), Sally Payne (IBTA Sydney), and Dr Jonathon Parkinson (UNSW Sydney).
Members of the Project Team are: Tricia Berman, Susan Pitt, Janet Micallef, Rigoula Roussakis, and Philip Steel. We are in the process of identifying community liaison/multicultural members of the project team.
The first meeting of the Steering Committee and Project Team on 2 August 2016 in Melbourne identified a pathway forward for the BTAA project. The Chair of the Chinese Cancer Society of Victoria and a representative of Breast Cancer Australia Network contributed to the meeting. The meeting decided to hold four Focus Group meetings – two with patients and two with allied health professionals – over the next two months to obtain feedback on resources to assist brain tumour patients in CALD communities to obtain understand what is available for support and how to get assistance immediately after diagnosis. The initial four Focus Groups will be held in Melbourne, Sydney and Brisbane.
See Tricia's June 2016 Progress Report. (pdf) here.
Forums are planned for September 2017 in Sydney (1st), Brisbane (16th) and Melbourne (23rd) to inform the development of the resource. For more information on the project see our news page and contat Tricia on email@example.com
Thanks to Cancer Australia and The University of Queensland for your assistance.