What information is important to family carers of people at the end of life?
A blog post written by Dr Kristina Thomas, Senior Research Fellow, Centre for Palliative Care, St Vincent’s Hospital Melbourne and collaborating centre of The University of Melbourne
As a researcher at the Centre for Palliative Care, I have spent years trying to understand the experiences and needs of family members who are looking after someone receiving palliative care, often referred to as ‘family carers’. Recently I have been involved in the creation of www.carerhelp.com.au a website for family carers to access information and resources to help them to provide care for someone with an advanced disease.
In creating CarerHelp, we talked to family carers to make sure that we were including information that would help them to deal with their day to day challenges as a carer. We interviewed 18 carers from around Australia who were currently caring for someone with an advanced disease or had previously cared for someone who had died from an advanced disease. We discovered that there were some key things we should focus on:
- Advice on how to be a better carer and also how to make the caring role still enjoyable. Carers wanted information on dealing with symptoms, managing medical appointments, how to care for the person at home, and how to find ways to still keep their relationship strong.
‘Planning questions ahead of time (for medical appointments). Taking notes or recording conversations.’
‘Try time out activities together (ways to relax while still caring). Things that the person can still enjoy (going to a concert of live music, sitting on the beach).’
- How to manage the emotional and physical burden of caring, which could sometimes go on for years. Carers spoke about how important it is to have a plan to look after yourself, which also includes using supports and accepting help when offered.
‘Looking after yourself may just be about living day to day and utilising as much assistance as you can to get through. When care goes on for longer than expected you may start to feel that you need a different strategy that actually ensures you get time out and actively do activities that may assist.’
‘Stay connected with friends and family.’
- Not being prepared enough for the death of the person they were caring for. Carers who were bereaved wished they’d had more information about how to know when death was close, what happens when someone dies, and what to expect in the time after death.
‘I wanted more preparation for the death – even though I have seen others die, I have not been the carer before and I was surprised by the impact.’
‘ I needed more information on what symptoms were due to the illness and needed treating (medication adjustment) and what was part of the dying process that may not need to be treated.’
- More information on available services, how to access and navigate services, and how to make the decision about transferring the person to an aged care facility, palliative care unit, or hospice.
‘The services are not as good in regional areas, they only do overnight for crises situation or symptom management’
‘Understanding what palliative care is and to make contact early – provide emotional support as well as practical and medical.’
- More information on grief and how to seek support following the death of the person they were caring for.
‘I wasn’t prepared for the grief. I found it helpful to read about death from other carer’s experiences.’
‘My two siblings and I made contact with psychologists prior to Mum dying and had 10 sessions each so that we could talk thru the dying process and then after death.’
In developing CarerHelp, we used the information from our interviews with carers to design resources that meet the needs of carers. If you would like more information on some of the tips our carers gave to other carers, read our ‘Tips from carers’. If you would like to watch some of our carers speak about their experiences please go to the ‘Carer Voice’ section in the website.
CarerHelp is now available for family carers to use and we encourage anyone who has used the website to participate in the online evaluation (available on the website) to help us continue to improve the website.
I would like to acknowledge the Commonwealth Department of Health for funding this project and thank our partners, Flinders University, University of Technology Sydney and Carers Australia.
Dr Kristina Thomas, Senior Research Fellow, Centre for Palliative Care, St Vincent’s Hospital Melbourne and collaborating centre of The University of Melbourne