Pancreatic cancer is one of Australia’s deadliest diseases, with an average time from diagnosis to death a devastatingly short five months.
In an Australian first, a new service and study aims to support carers through the devastating impact of pancreatic cancer.
To support carers through a loved one’s journey with pancreatic cancer, PanKind, Australia’s only foundation dedicated to pancreatic cancer is partnering with QIMR Berghofer Medical Research Institute to trial a new service that aims to support carers through the devastating impact of the disease.
Blue Haven residents Debbie and her daughter Caitlin Dove are encouraging carers supporting loved ones with a terminal illness to seek assistance if they need it, as they themselves were carers for Debbie’s mum Doreen Yeomans to pancreatic cancer in 2014.
“My nan was diagnosed in July 2014, and she passed away in August of the same year.
“We had our whole family come and we built a little tribe to help care for her like bathing, dressing and rolling her to make sure she didn’t get bed sores.
“It was a quick and sad time for us, and no one tells you how hard it will be, but we came together as a family to keep her comfortable and give her a nice send off,” said Caitlin.
“Someone always slept with her, and we had a baby monitor to keep watch over her.
“It’s a terrible thing to go through,” said Debbie.
“The most important thing was to keep her dignity and to keep her comfortable.
“It was hard as we were doing things for her that we didn’t think we’d ever have to do, and even though it was hard, you do it because you care about them so much and you want to make sure that they are comfortable.
“Carers need support as well, when we were all caring for Nan, my parents and Aunties and Uncles all had to take some time off work to help care for them, which makes it harder as you’re not getting paid.
“The biggest challenge for us was managing the stress of caring for her.
“We took on the role of a doctor, hiding our emotions so we could comfort and reassure her that everything would be okay.
“If this study was around when Nan was sick, our family would definitely join it.
“It’s very important to reach out for support, even to just get out of the house and talk to someone outside of your family.
“Please don’t be scared to reach out for help and know that you are not alone and no matter what, always remember that you’re helping them, and you are appreciated,” said Caitlin.
The PRoCESS (Pancreatic cancer Relatives Counselling and Education Support Service) Trial, led by Associate Professor Vanessa Beesley and Professor Rachel Neale from QIMR Berghofer Medical Research Institute aims to determine whether having a nurse provide structured counselling and education to carers of people with pancreatic cancer helps them cope with the challenges they face.
The study will also look at whether it is cost-effective for the health system.
CEO of PanKind, Michelle Stewart, said those caring for loved ones with pancreatic cancer are twice as likely to experience clinical anxiety than the people they are caring for due to unmet support needs compounded by the short timeline from diagnosis to death.
“In addition to carers being immediately confronted with the need to assist in the management of complex physical symptoms and provide emotional, financial, legal and spiritual support, they also face the impending loss of their loved one.
“It is a brutal diagnosis and a huge weight to bear,” Stewart said.
Beesley, a Behavioural Scientist specialising in Psycho-Oncology said the feasibility study revealed that carers highly valued having a nurse-counsellor with clinical expertise, who was someone outside of the family to provide support through the toughest time of their lives.
“The main perceived benefits were emotional support, with the nurse-counsellors’ knowledge, care coordination and personalised care.
“The nurse-counsellor was said to become their tower of strength, helping to prepare them for what was to come and linking in with other health professionals as required.
“The nurse-counsellors can help carers at each stage of the journey, including dealing with diagnosis, treatment options, symptoms management, providing strategies for stress management, financial distress, enhancing relationships, end of life care planning and bereavement support.
“By helping to give carers increased confidence to adequately manage symptoms and treatment, the study also hopes to reduce costs across the health system by reducing patient admissions to hospital.
“This will be measured by looking at emergency department presentations, time spent in hospital, timing of referral to specialist palliative care services, overall survival and quality-adjusted life years,” Beesley said.
The project will assess the impact of the counselling intervention on various outcomes, including carers’ belief in their capacity to provide appropriate support, as well as their mental health, fatigue, supportive care needs and quality of life.
All participants will be provided with general information support; however, half of the participants will also be offered counselling and education sessions with a nurse via video conference or telephone to measure its effectiveness.
The counselling will be weekly for four weeks and then fortnightly for three months.
Monthly sessions are then available until the end of the study if desired.