Ms Johnson, who is based in Ballarat Regional Integrated Cancer Centre, has found pandemic impacts on healthcare have heightened isolation for people facing palliative care across the Grampians region.

She has joined an urgent Cancer Council Victoria call for patients, families and support persons to share their experience in a study to help shape palliative care across the Grampians, particularly with so many uncertainties still ahead in the pandemic.

Ms Johnson is one of three Cancer Council Victoria regional nurses who help guide cancer patients and their carers via a support hotline.

She said with so many disruptions to healthcare delivery, and a stark shift from face-to-face care, peer support was proving invaluable.

"We know that talking through experiences with someone who has 'been there before', known as peer support, is an important support mechanism for people experiencing cancer or caring for someone with cancer," Ms Johnson said.

"We also know that caring for someone receiving palliative care can be isolating and overwhelming and can be made even more difficult by COVID-19 restrictions.

"Hearing the lived experience and reflections on what peer support would be most beneficial is essential for ensuring that any services that are developed by Cancer Council Victoria in future are relevant and needed."

The study is led by Deakin University researchers who specialise in working with people affected by cancer, and is made in partnership with Grampians Integrated Cancer Service and Cancer Council Victoria.

Ms Johnson has worked in all areas of oncology and said what was particularly special about working as a palliative care nurse was the "100 per cent person-centred approach" and privilege to work with families during such a difficult time.

Such work, Ms Johnson said, had become particularly challenging under pandemic restrictions.

Before the pandemic, community nurses could visit people in their homes and also offer emotional support. Reduced in-person consultations had also created heavier reliance on tele-health, which Ms Johnson said could prove difficult for assessing patients and providing care but this was also harder for patients and carers to relay difficult information.

On top of this, hospital restrictions on visitors meant family and friends were unable to spend as much quality time with loved ones who had limited time. Access to support groups, counselling and self-care was also restricted.

"Palliative care demands a certain amount of sensitivity and empathy that can be hard to convey over the phone. Health professionals may also miss important cues when providing care over the phone that can affect the care provided," Ms Johnson said.

"Caring for someone who is palliative can be extremely taxing and exhausting. Carers are required to put their lives on hold to look after their loved ones, often with no precise timeline.

"Living in rural and regional areas can increase the challenges for these people due to isolation and a lack of services and supports.

"...Carers of palliative patients are also finding it more difficult to access their own supports to take care of themselves and their mental well-being."

IN OTHER NEWS

Ms Johnson said all cancer patients and their families were highly anxious about COVID and potential effects this can have on them with compromised immune systems.

Times when support persons and family could not attend treatment had been tough. Ms Johnson said a lot of rural patients rely on family to bring them to hospital and, unable to enter the hospital, many spent hours waiting in their cars while a loved one was in treatment.

The study is seeking support people for someone in palliative care or who is newly bereaved.

Participants must be from the following areas: Ararat, Ballarat, Golden Plains, Hepburn, Hindmarsh, Horsham, Moorabool, Northern Grampians, Pyrenees, West Wimmera or Yarriambiack.

The study is a telephone interview before the end of November.

To register, or for more details, email kerry.mckenzie@cancervic.org.au.

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