Helping Family Carers To Support A Relative Or Friend With Advanced Disease: The Australian Carer Toolkit For Advanced Disease
Aim
To develop and implement a national website that contains essential information to help Australian family carers support a person with advanced disease.
Research Overview
The purpose of the 'Helping family carers to support a relative of friend with advance disease: The Australian carer toolkit for advanced disease' (the toolkit) is to help Australian family carers to support a person with advanced disease by providing free access to high quality information via a website. The toolkit will provide a systematic, consistent approach for the provision of information to family carers in line with the National standards for palliative care.
The toolkit will:
- Provide access to information to enable family carers to support people with advanced disease.
- Offer a set of core learning modules as well as learning objectives for each topic.
- Provide vignettes, how-to videos, short interactive activities and written information with appealing visuals.
- Links to other relevant resources as pertinent.
- Contain essential information and resources that are readily accessible on all common platforms (web, phone, desktop).
- Be developed with wide stakeholder engagement, and contain information based on best available evidence and relevant to palliative care standards.
Link to Carer Toolkit Webpage
For more information on The Australian Family Carer Toolkit Project or to get involved, please visit www.carerhelp.com.au
Project Team
- Prof Peter Hudson, Director, Centre for Palliative Care, St Vincent’s Hospital Melbourne, VIC. [Carer Toolkit Project PI]
- Dr Kristina Thomas, Senior Research Fellow, Centre for Palliative Care, VIC. [Carer Toolkit Project Officer]
- Dr David Marco, Research Fellow, Centre for Palliative Care, VIC. [Carer Toolkit Literature Review]
- Ms Alfreda Plazzer (née Soetopo), Project Manager – Research, Centre for Palliative Care, VIC. [Carer Toolkit Administration Officer]
- Ms Soula Ganiatsas, Head of Operations, Centre for Palliative Care, VIC. [Carer Toolkit Contracts & Finance]
- Prof Jennifer Tieman, CEO, CareSearch, Flinders University, SA [Representative of Carer Toolkit project subcontractor, CareSearch]
- Prof Deborah Parker, Professor of Nursing Aged Care(Dementia), Faculty of Health, University of Technology Sydney (UTS), NSW. [Representative of project subcontractor, UTS]
Key Contact
Dr Kristina Thomas
Email: kristina.thomas@svha.org.au
Funding Source
Australian Government Department of Health as part of the Public Health and Chronic Disease program
Key Publications
Parker D, Hudson P, Tieman J, Thomas K, Saward D, Ivynian S. (2021). “Evaluation of an online toolkit for carers of people with a life-limiting illness at the end-of-life: health professionals' perspectives”. Australian Journal of Primary Health 27(6):473-478. doi: 10.1071/PY21019. PMID: 34802508.
Marco DJ, Thomas K, Ivynian S, Wilding H, Parker D, Tieman J, Hudson P. (2022). "Family carer needs in advanced disease: systematic review of reviews". BMJ Supportive & Palliative Care 12(2):132-141. doi: 10.1136/bmjspcare-2021-003299. PMID: 34996834.