Breathing Space is a purpose built, moderated, and secure social network, where people can seek support from clinicians and each other to help them improve their wellbeing and resilience. Breathing Space has been tested in clinical trials and is now being offered to family and friends supporting a person affected by brain cancer in partnership with the Mark Hughes Foundation.

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Mark Hughes Foundation
The University of Newcastle
HMRI

The team at the Mark Hughes Foundation acknowledges that our community is experiencing challenging times due to the coronavirus (COVID-19) outbreak. You may be feeling stressed, anxious, or overwhelmed about your loved one with a Brain Cancer diagnosis. To help keep you well and supported, we encourage you to connect with others, share your experiences, and find helpful advice through the Mark Hughes Foundation online community offered via the University of Newcastle’s Breathing Space app. The Mark Hughes Foundation Breathing Space app is freely available 24/7 and can be downloaded to your iOS or android device via the App Store or Play store.

Breathing Space is a purpose built, moderated, and secure online community. It offers a confidential space where you can share your concerns, discuss your experiences, exchange useful information, and connect with mental health experts and peers in a safe and supportive environment. In doing so, Breathing Space provides an opportunity to improve your wellbeing and levels of resilience. To promote this, there will be moderation from the research team including Psychologists and Social Workers, who will be online regularly to provide therapeutic engagement, content, and discussion topics.

As the social distancing measures of the COVID-19 continue, it might be more difficult for you to access your usual support networks and services. Being apart from usual support can be especially challenging for people supporting a loved one with Brain Cancer. This is because positive social connections are important for improving and maintaining mental health and wellbeing. In joining Breathing Space, you can stay connected virtually.

FEATURES

Access the app on your phone
Link + Relate CONNECT & RELATE WITH OTHERS
Edit + Smile SHARE YOUR THOUGHTS & EMOTIONS
Community + Trophy CONNECT WITH THE COMMUNITY

Eligibility Criteria, Terms, Privacy & Conduct

Eligibility Criteria

Breathing Space communities function as ‘closed groups.’ This means that in order to join a specific online community, a person will need to share common issues, experiences, or concerns with the people in that group. This will allow members to connect and socialise with others who are experiencing similar or related challenges or concerns, while being supported by clinicians. This sort of community offers greater privacy and confidentiality than an ‘open’ network.

To register, you will need to meet the eligibility criteria of the group. The Mark Hughes Foundation Breathing Space group is for Australian adults, aged 18 years or over, who are supporting an adult loved one with Brain Cancer.

Register your participation in the network here. We will include you in the online community that is most relevant to your experiences.

Code of Conduct

You will have free online access to Breathing Space 7 days a week, 24 hours per day. Before you register with the network, it is important that you familiarise yourself with the group guidelines (see below). These guidelines are focused on making sure that the community is a safe and helpful place for you to share and receive information with others, give and receive support and encouragement, which help to ensure that the community operates as it should.


To get the most out of the community, everyone needs to understand and follow the group guidelines to make it a safe and helpful place for everyone. By joining Breathing Space, you agree:

  • To be authentic and honest in your interactions with other peers in the community;
  • To ‘own what you post’ in regard to the content or comments that you make in the community forum. Although you have the right to maintain anonymity, remember to not post content (i.e. comments) that you would not be prepared to say in person;
  • To treat people well and with respect. Don’t engage in negative comments, as Breathing Space will not tolerate posts that are offensive, inciting, threatening, insulting, or encouraging of negative behaviour and
  • To not post copyrighted content or material such as posts that advertise products or businesses.

You are solely responsible for any content or material that you post or upload on the Mark Hughes Foundation Breathing Space community forum, or that is posted by another person using your username or password. Breathing Space and UoN excludes all liability (to the extent permitted by law) for any loss, damage, or expenses suffered by you or claims made against you arising from content or material which you post or upload, or which is posted by another person (whether using your username or password or otherwise).

Please remember that the forum is a virtual space to connect with, and seek support from, other people with lived experience of supporting a loved one with a diagnosis of brain cancer. While there will be regular monitoring of the posted content and some input by Psychologists and Social Workers (Moderators) it is not a counselling or individual support service. The Moderator will be able to provide you with some assistance by directing you to other services, but they cannot be your personal therapist.

Acknowledgement and Acceptance of Terms and Use

The ‘Terms of Use’ for Breathing Space aim to govern your use of this online community. Your access to and use of the Breathing Space app, which is owned and operated by the University of Newcastle (UoN), is reliant on your acceptance of these Terms of Use.

By accessing Breathing Space, you accept and consent to, without limitation or qualification, all of the Terms of Use. You will also accept and consent to, without limitation or qualification, all of the rules enclosed in the Code of Conduct. Before downloading and using Breathing Space, please look over the Terms of Use and The Code of Conduct carefully.

UoN reserves the right to amend these Terms of Use without notice to you at any time, however, the emended Terms of Use will be updated and available on this page. Your access to Breathing Space will commence upon our acceptance of your application for registration, which will be confirmed to you via email and/or SMS.

Is my Information Private?

UoN has an obligation to ensure your privacy and confidentiality when accessing the Breathing Space community. Your information will be completely confidential and any personal details, which may identify you, will not be passed on to third parties. Please be aware that the UoN and Breathing Space will not disclose or use content that you post to the network, except:

  • in the use of website analytics to monitor the volume of traffic on the network;
  • to investigate possible breaches of these Terms of Use;
  • if the law requires or authorises the use or disclosure of content that you post;
  • if disclosure is reasonably necessary to enable an enforcement body (i.e. police) to perform its function.

Disclaimer and Limitation of Liability

Breathing Space is provided on an “as is” and “as available” basis. UoN and Breathing Space make no representations or warranties of any kind, express or implied, as to the information, content or material included on the community forum. By engaging and using the app, you are expressly agreeing that your use of Breathing Space is solely at your own risk. You should always seek the advice of a physician or other qualified health or mental health provider with any questions you have regarding a medical or mental health condition. You should never disregard professional medical or mental health advice or delay in seeking it because of a result provided by anything you read on Breathing Space community forum.

Access to an ownership of Breathing Space

The Content in Breathing Space is protected by copyright, trademark and other intellectual property laws and the rights of UoN and/or their third-party licensors. You obtain no interest in the Breathing Space Content.

The content, material, logos, and illustrations provided in Breathing Space are the property of Breathing Space, and UoN, and may not be reproduced or redistributed or otherwise used for any other purpose without permission. You must not modify, copy, reproduce, republish, frame, upload to a third party, post, transmit, distribute, or communicate to the public the Content (or a substantial part of it) in any way except as expressly provided for in these Terms of Use or under the Copyright Act 1968 (Cth) or other applicable laws.

You are granted the right to view Breathing Space Content using your web browser and mobile phone for your own personal use.

By submitting content or materials to Breathing Space, you consent to UoN exercising all rights in respect of such content or materials as are set out in these Terms of Use even if the exercise of such rights would, but for this consent, infringe any moral rights that you may have in such content or materials.

Quality of Information

Any errors in the content that are brought to our attention will be corrected as soon as possible. UoN reserve the right to change any content on Breathing Space at any time without notice.

Research Project Consent

Download the Participant Information Statement

Research Project: Supporting families with a loved one diagnosed with Brain Cancer.

This research project is being conducted by Professor Frances Kay-Lambkin, Dr Milena Heinsch, Jenny Geddes, Dara Sampson, Hannah Cootes, Hannah Wells, Lauren Rogers, Jessica Wilson, Alisha Gooley, Catherine Adams, and Sophia Wooldridge at the Centre for Brain and Mental Health Research, at the University of Newcastle. The project is being run in conjunction with the Matilda Centre for Research in Mental Health and Substance Use, at the University of Sydney. This project has been funded by the Mark Hughes Foundation, through their HMRI Brain Cancer Innovation Project Grant.

By clicking your consent below, you will agree to participate in the research project and will indicate you agreement with the following:

  • I understand that the project will be conducted as described in the participant information statement, a copy of which I have read, understood and retained.
  • I agree to participate in the research as described in the participant information statement, and give my consent freely to take part in the Breathing Space community.
  • I understand that my participation in this research is voluntary and I may withdraw from Breathing Space without having to provide a reason.
  • I understand that my personal information will remain confidential to the researchers except as required by law.
  • I understand that I will not have the opportunity to make changes or withdraw my contributions to the Breathing Space network, after a period of two weeks, as it will not be possible to seperate your contributions from the collected, collective data.
  • I have the right and opportunity to have any questions about the research project answered to my satisfaction.
  • I understand that I am required to sign this form in order to participate in the research as outlined in the Participant Information Statement.

Consent

By clicking through to register for Breathing Space, you accept and consent to, without limitation or qualification, all of the Terms of Use. You will also accept and consent to, without limitation or qualification, all of the rules enclosed in the Code of Conduct and Participant Information Statement.

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