Every year, 200 people in WA are diagnosed with a High Grade Glioma, commonly known as a brain tumour. It is almost invariably fatal, with a rapid decline in function and independence and affects not only the patient, but the carer and family unit.
People with brain tumours experience cognitive and behavioural changes, they cannot drive, and their treatment can include chemotherapy, radiotherapy, physiotherapy, occupational therapy,
speech pathology, dietetics and social work reviews.
Dr Georgia Halkett, Senior Research Fellow in the School of Nursing at Curtin University says their research has shown carers of people with brain tumours are significantly more distressed than patients and feel poorly prepared to give the extensive care they need to provide their loved ones.
“There may be a number of reasons for carer distress and lack of preparedness, including more trips to the emergency department, longer hospital stays, psychological morbidity and subsequent
complicated grief in the carer,” says Dr Halkett.
To help reduce this stress, Dr Halkett, Professor Anna Nowak from the University of Western Australia and their team have developed and piloted a tailored nurse-led education and support intervention for carers of people with brain tumours.
“Participants are initially identified as eligible for the study by their medical oncologist or the cancer nurse coordinator,” says Dr Halkett.
“The intervention consists of four parts and is based on published literature and our previous work.”
An initial telephone assessment of carer’s needs is conducted and is followed by a home visit in which an oncology nurse facilitates carer referral to existing community, allied health, and psychosocial services.
An individually tailored resource file is given to the carer complete with all the relevant information required.
“The resource file contains comprehensive tailored information which is based on identified individual patient and carer needs,” says Dr Halkett.
“This resource file will consist of disease-specific information, caring for someone with a terminal illness, managing medications, seizure prevention and first aid, managing sleep disturbance, services
available and self-care.”
“The fourth component is ongoing telephone support for the carers.”
“We hope that by better informing and preparing the carer for the changes that their distress will be reduced, they will feel more prepared and better able to support their loved ones.”
“We are also testing whether the intervention assists in reducing costs such as unplanned emergency and/or outpatient admissions and length of stay in hospital, hospice, or residential care.”
Participants are being recruited from Sir Charles Gairdner Hospital and St John of God Hospital in Murdoch and Subiaco.
This phase of the study started in March and is funded until December 2014. If you are interested in finding out more about the study, please contact Dr Georgia Halkett at Curtin University on:
041 883 8914 or at firstname.lastname@example.org