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Understanding the experiences and perspective of carers of myeloma patients

This project was conducted between 2015-2016.

Aim of project

This project aimed to better understand the experiences and perspectives of those who provide informal care and support to relatives and friends with myeloma.

Project summary

Relatives and friends of myeloma patients take on considerable caring roles, and for many this involves significant life changes and challenges. In this research project in depth interviews with carers were conducted and 374 carers completed a survey about their experiences.

The findings showed that relatives and friends are affected in many different ways as a result of both caring and dealing with the day-to-day implications of myeloma. Many in this situation mentioned changes in their social life, relationships, income, and wider family dynamics. The biggest impact reported by carers on their own lives is an emotional impact, with 94% of carers affected this way. They told us that the uncertainty of myeloma is a major factor and that it is difficult to adjust to ‘living from day to day’.

The findings demonstrated that looking after a relative or friend with myeloma involves a variety of roles and that some of these can be particularly difficult. Carers spoke of having to feel emotionally strong and be positive for their relative or friend. The findings suggest that most of the support accessed by carers relates to Myeloma UK information and support services, followed by informal support from family and friends. However, one third of carers in the survey said they do not access any support at all. While for some caring is very much a ‘private matter’, most carers feel that at times they would like more support.

Who was involved with the project

The research was designed with the input of myeloma carers, Myeloma UK and the Picker Institute Europe. The Picker Institute Europe was commissioned to undertake the research on our behalf and provide an independent detailed research report.

How this project will help Myeloma patients

As a myeloma community working together we can and must ensure relatives and friends of myeloma patients have the information and support they need to support them in their caring roles. Ensuring that carers get the support they need is both critically important and complex. This research project is helping us to address the many challenges preventing carers from both seeking and accessing support for themselves.

Acknowledgements and funding

This work was funded by Myeloma UK.

Outputs

You can read the full report of this study here. The findings from this research directly informed a new and comprehensive information pack for Carers of myeloma patients which you can read here.