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Understanding the experiences of patients and caregivers living with myeloma after treatment

This project was conducted between 2008-2009.

Aim of project

This study investigated the experience of patients and their caregivers of living with myeloma after treatment.

Project summary

20 patients and 16 caregivers in the northwest of England completed interviews about the effects of myeloma on their lives, their issues and concerns, their supportive needs, and how they coped in daily life.

It was found that myeloma had a substantial impact on the emotional, social, and work-related areas of life for both patients and caregivers. Caregivers were found to often neglect their own needs to provide practical and emotional support to patients which often led to experiences of a heightened illness burden and difficulties with coping. Both patients and caregivers had significant fears and uncertainty about the future, with myeloma being described as a ‘time bomb’.

This project highlighted the importance of psychosocial rehabilitation being offered to patients and caregivers in the long term after treatment. The project recommended that health professionals take more time in addressing the key concerns of living with uncertainty about the future. It also recommended that health professionals discuss the long-term supportive care needs and quality of life issues with patients and caregivers.

Who was involved with the project

The principal investigator was Dr Molassiotis from the School of Nursing, Midwifery & Social Work at the University of Manchester.

How this project will help Myeloma patients

This study was the first to describe the experience with myeloma 5 years after diagnosis, using both patients’ and caregivers’ experiences. These findings provide insight about the support needs of myeloma patients and their caregivers and the areas of life affected by a myeloma diagnosis. Additionally, the research made recommendations on psychosocial rehabilitation which has the potential to improve the wellbeing of patient and caregivers.

Acknowledgements and funding

Myeloma UK funded the project with the Miriam Hyman Research Grant.

Outputs

This project was published in the journal Supportive Cancer Care and you can read a summary of that report here.