Researchers at the University of Newcastle want to hear about your experiences of caring or supporting a loved one with a Brain Cancer diagnosis. They are developing an online program to support friends/family members of people with a Brain Cancer diagnosis. You can help them get this right by sharing your story.
Professor Kay-Lambkin and her team were the successful recipients of the 2019 Mark Hughes Foundation Brain Cancer Innovation Project Grant.
To find out more about the Breathing Space community for families and friends affected by brain cancer visit here.
An online community for those supporting people with brain cancer.
A pilot of a new online support portal has opened to provide a supportive community for people sharing the brain cancer journey with a loved one.
Developed by mental health researchers at the University of Newcastle and HMRI, with the support of an Innovation Grant from the Mark Hughes Foundation (MHF), the MHF Breathing Space app offers a safe space for families and friends of people living with brain cancer through a unique combination of support and guidance through a community of mental health professionals and people with lived experience of brain cancer.
For those who are caring for a person with brain cancer, there’s an extra level of pressure. Staying strong and supportive for your loved one can take its own toll - and it’s hard to ask for help when you know that they are going through such a tough time.
That is why the MHF Breathing Space community has been developed.
“When I was first diagnosed with brain cancer my family were always there for me,” says MHF co-Founder Mark Hughes. “But who was there for them?” Mark asks.
“This app will provide access to a vital online community that families and friends who are going through the brain cancer journey also need. If someone feels overwhelmed they can just go into their room, close the door and privately access the support they need via the app.”
“People feel connected to the Mark Hughes Foundation as we’re a real community. So I’m looking forward to Breathing Space being a valuable community space for people to find the help and support they need whenever they need it,” says Mark.
The app is part of a larger research project being conducted by a team of mental health researchers to help develop a tailored online program to offer support information and strategies for coping.
As such, the research team will also be conducting a phone and online survey to find out how families and friends are impacted by a loved-one’s brain cancer diagnosis. They will also be speaking with health and medical professionals as well as people diagnosed with brain cancer.
Find out more about the survey here.
“We know that the wellbeing of friends and family members is closely tied to the experience of the person with brain cancer,” says project lead Professor Frances Kay-Lambkin.
“Healthy carers, who are socially connected and meeting their own needs, are better placed to support their loved one with brain cancer.”
Background information on Breathing Space
- Breathing Space is a purpose-built, moderated and secure social network, where people can seek support from clinicians and each other to help 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.
- The Breathing Space community for families and friends affected by brain cancer is one of several communities available on the Breathing Space platform.
- Breathing Space is available to eligible users via the App Store and Google Play.