Monica Morris speaks with ecancer at the 16th International Myeloma Workshop about findings from a study into the experience of caring for myeloma patients.
She also spoke with ecancer about the long term effects of myeloma treatment.
ecancer's filming has been kindly supported by Amgen through the ECMS Foundation. ecancer is editorially independent and there is no influence over content.
I was accepted to give an oral abstract presentation at the Nurses’ Symposium and the abstract was on the care of carers of myeloma patients. The title of the abstract was Life in Limbo which was one of the themes that came out of the abstract. So this was a study that we did at Myeloma UK; it was a survey of over 250 myeloma carers and some in depth interviews and we got some themes that were coming through from myeloma carers which I presented. These were like the range of activities that families and friends are performing for myeloma patients and the huge role they play in supporting patients but we also looked and found out the impact on carers. So this was how their lives were affected, particularly things like their emotional health, their ability to work, impact on finances, those sorts of things.
We looked at the support available for carers and what was stopping carers accessing support that they need with a few challenges and calls to action about how we can help improve care of carers because they really do the fantastic job in supporting their families.
What challenges do carers face?
Some of the difficulties they face are probably they’re not aware of the support that’s out there for them. Maybe they don’t feel that they should be accessing it; often they feel that everything should be directed to the patient, they very much don’t want to take anything away from that but they do have a lot of unmet needs themselves. So number one is about helping them understand that it is very valid for them to seek help and support because they need to do that in order to be able to look after a patient over a long period of time. One of the findings was that the majority of carers were looking after patients between two and six years and at quite an intensive level. So it is over a long period of time so they do need to be resilient. Accessing services and actually sometimes the services aren’t always there for them to access either, so there is a bit of work to do in trying to generate more services for the patients.
What region did the data come from?
The data all came from the UK but within the symposium when I presented the abstract it very much resonated with the audience. So there were nurses there from mainland Europe, from the United States and from Australia and we all were very… it was a universal problem. Some of the resources that I talked about, it was actually good because we could talk about how we might share those. With the internet you can access information much more easily.
What would be your take home message to carers?
Talk to your healthcare professionals about what information is out there; not to feel that you shouldn’t be doing that, it’s absolutely important to get the support you need as a carer to be able to really do your best job for the patient, which is what every family member wants to do.