CARERHELP: a resource dedicated to supporting those caring for people near the end of life
The purpose of CarerHelp is to offer an online resource to help family carers prepare for and manage the role of supporting a person who is approaching the end of life.
Why did we develop CarerHelp?
Over 160,000 Australians are expected to die each year. Most of them will need the support of a family carer, particularly those who are living at home. When people who are approaching the end of life are asked about what matters most to them, a typical response is a desire for their family to be supported, including during bereavement. Accordingly, policy documents and clinical practice standards require family carers’ needs to be assessed and addressed. Yet in the most part, support for these carers is not systematically applied.
Most Australians want to die at home, yet only approximately one in five do so. This is often because their family carers are overburdened and not sufficiently supported. We do not want to pathologise the family carer role; many carers will be able to identify positive aspects. However, approximately 30 per cent of family carers will become distressed, and many will be isolated and suffer financially. Furthermore, most family carers are living their first experience of caring for someone who is at the end of life. This can be very overwhelming.
Based on a large body of evidence, we know that carers want information about:
- How to recognise when someone may be close to death
- What to expect when someone is actually dying
- Where to get help and support
Importantly, we also know through several research studies that carers who are more informed are better prepared for their role. They are less distressed, feel more competent and can cope better during bereavement. CarerHelp is designed to focus on these areas in order to improve family carer wellbeing. It is, therefore, a resource that can help palliative care providers better support family carers. Hence, we strongly encourage palliative care staff to routinely make family carers aware of this resource, which they can access in their own time, at their own pace and according to their own specific information needs.
How did we develop CareHelp?
CarerHelp is not just another website. It has been developed over the last three years in a very comprehensive way via four key steps:
- The first part of the project involved a systematic review of the published evidence of the needs of family carers of patients with advanced disease.
- We conducted a national and international scoping study to identify existing online resources in order to avoid duplication.
- We interviewed family carers to get their first-hand experiences and insights regarding what they deemed crucial in terms of content and resources for CarerHelp.
- Finally, we have been guided across the lifespan of the project by the knowledge and experience of a very engaged national reference group, comprising representatives from approximately twenty-five peak bodies and institutions.
Based on these data, it became apparent that CarerHelp needed to target specific strategies to support family carers looking after someone toward the end of their life. This is the real point of difference between CarerHelp and other online resources.
The importance of partnerships and collaborations
National projects of this kind are reliant upon productive collaborations and diverse input. Accordingly, I would like to acknowledge and thank:
- All family carers who shared their valuable insights in developing the content of CarerHelp
- My team at the Centre for Palliative Care @ St Vincent’s Hospital Melbourne & The University of Melbourne, who have led this project from the outset
- The CareSearch Team at Flinders University, who has been responsible for building the CarerHelp website and will take carriage of maintaining and promoting it
- The University of Technology Sydney, who is leading the evaluation of CarerHelp which will occur over the subsequent months
- Carers Australia for their assistance with the launch and promotion of CarerHelp
- The Australian Government Department of Health for funding CarerHelp I am fortunate to be involved in several international initiatives, and my colleagues overseas are extremely jealous that we have a national palliative care strategy that also incorporates funding for projects to improve palliative care nationwide.
- Dame Quentin Bryce (former Governor-General of Australia), who has agreed to be an advocate for CarerHelp. Her support of indigenous people, women, children and carers is legendary.
Watch her video promoting CarerHelp.
I sincerely hope that CarerHelp can be of great benefit to family carers who are supporting a person approaching the end of their life. In summary:
- CarerHelp is the trustworthy source of quality and practical information for carers of persons with chronic conditions at the end of life.
- CarerHelp has useful resources that will enable carers to be better prepared for supporting partners, relatives and friends who are at the end of life.
- Experts, carers, health professionals, researchers and national peak bodies/organisations all have contributed to the development of CarerHelp.
- To assist CarerHelp to have a positive impact on family carers, we need all palliative care staff in Australia to be familiar with this resource and encourage family carers to access it.
Thank you for supporting the uptake of CarerHelp
Professor Peter Hudson
CarerHelp Project Lead &
Director, Centre for Palliative Care c/o St Vincent’s Hospital and Collaborative Centre of The University of Melbourne
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