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Better access to psychosocial support crucial for people with brain tumours, post treatment

Photo: Griffith University
People with brain tumours require access to extended and specialised psychosocial intervention to address the complex cognitive, behavioural, social and emotional consequences of brain tumour, according to Professor Tamara Ownsworth, from Griffith University's Menzies Health Institute Queensland.

“On average each day, 6 Australians are diagnosed with brain and other central nervous system cancers and 4 will die from such diseases,” says Professor Ownsworth.

“Brain tumour has the combined effects of cancer and brain injury, with most people experiencing treatment side effects, such as nausea and fatigue, and impairments in their physical, thinking skills, behaviour and emotions.

“Up to 50% of patients and their family members report clinical levels of anxiety and depression.”
Studies have shown that for those people who have completed treatment for brain cancer, many are left unable to cope with the subsequent physical and emotional difficulties.

“Over the last 10 years we have interviewed approximately 150 people with brain tumour and their family members,” says Professor Ownsworth.

“These conversations highlight that people are typically discharged into the community after their medical treatment with very little support to cope with the everyday effects of the illness and the anxiety and uncertainty about the future.

“Many of us struggle with the existential issues of life, death and meaning at different points in our lives.
“These issues really come to the fore when you or a loved one is diagnosed with a life threatening illness.”

Some of the key issues that lead to mental health difficulties including the stress associated with the diagnosis, an uncertain prognosis and complex neurological and functional impairments.

Griffith University research identified that, as a rule, people grapple with the following issues at different stages of the illness:
  • What’s happening here? (leading up to diagnosis and noticing frightening symptoms such as slurred speech and loss of feeling down one side)
  • What does this mean for me? (soon after diagnosis and learning the ‘facts’ of the situation; will I survive? what will I tell my children?)
  • How things will be versus how things actually were (a comparison often made before and after treatment)
  • What could have been? (looking back on their diagnosis and treatment and reflecting on how the situation could have been different [both negative and positive outcomes])
  • What does the future hold? (ongoing fears, concerns and hopes for the future)

“People with brain tumour have long-term and complex support needs due to the combination of neurological and oncological effects and ongoing stressors,” says Professor Ownsworth.

“In particular, for many brain tumours the concept of a ‘stable medical condition’ often does not apply due to the risk of progression.”

Psychological support in this context refers to evidence-based ‘talking therapies’ that support the person and their family members to explore the impact and meaning of the illness.

“People are encouraged to share their values, hopes and fears about the future; topics that can be very difficult to discuss with close family and friends due to their own distress.

“Our particular therapeutic approach aims to improve people’s understanding of the brain tumour and its everyday effects, their ability to manage or cope with these changes, and support them to find meaning in their life situation.”

To date, the MAST program has only been delivered face-to-face and over the telephone, with the use of videoconferencing and other technologies the next logical step to overcome the barriers associated with face-to-face therapy in a clinic, such as transport, distance, debilitating symptoms.

“We have successfully trialled the feasibility of remote delivery of the MAST program and the use of a video conferencing platform,” says Professor Ownsworth.

“People with brain tumour and their carers identified many benefits of receiving psychological support remotely, and all preferred videoconferencing over standard telephone due to visual features that increased their sense of connection.”

Remote therapy technologies include telephone, messaging and email, or multi-modal systems such as videoconferencing, virtual therapists and interactive web-based platforms.

“The person with brain tumour will use their home PC, laptop or tablet in a quiet and private location such as their own home, and will be able to see and hear the psychologist and view pictures and documents shown on the psychologist’s computer screen.

“They will also be able to share pictures and documents with the psychologist and involve family members in the therapy.”

Videoconferencing support interventions are found to be beneficial and convenient for the broader cancer population; however, these are yet to be used in routine care for people with brain tumour.

A collaborative project between Griffith University, Cancer Council Queensland and the Princess Alexandra Hospital, funded by National Health & Medical Research Council Partnership Project Grant, aims to to evaluate the benefits and costs associated with the telehealth intervention compared to existing cancer support services.

“Participants will receive 10 weekly therapy sessions delivered via Zoom videoconferencing.

“We have adapted therapy resources from the MAST program for remote delivery.

“An initial training session will support participants to set up a Zoom account, receive a call, navigate the audio and visual features of the platform, and troubleshoot any difficulties.”

Professor Ownsworth says she hopes continued research will improve access to specialised psychosocial support for the brain tumour population.

“We expect to find that the telehealth program improves people’s mental health and quality of life and is beneficial to deliver from the perspective of the healthcare system.

“Ultimately, we want to improve both the quality of and access to specialised psychological support for people with brain tumour and their family members.”

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Nicole Madigan

Nicole Madigan is a widely published journalist with more than 15 years experience in the media and communications industries.

Specialising in health, business, property and finance, Nicole writes regularly for numerous high-profile newspapers, magazines and online publications.

Before moving into freelance writing almost a decade ago, Nicole was an on-air reporter with Channel Nine and a newspaper journalist with News Limited.

Nicole is also the Director of content and communications agency Stella Communications (www.stellacomms.com) and a children's author.