Abstract

The primary aim of this qualitative study was to explore myeloma carers/caregivers experience during outpatient-based oral treatment for patients with multiple myeloma (MM). Literature review. In-depth, open-ended interviews of seven purposively selected caregivers of MM patients in the United Kingdom. Findings showed that carers were involved in practical and emotional caregiving activities, assisting the patient with managing complex oral combination treatments, and monitoring side effects. Care-giving activities continued after treatment, and experiences were described within the context of the MM journey and fear and uncertainty about the future. Caregivers also experienced a range of emotions, which they often kept hidden from the MM patients and other family members. Difficulties balancing caring responsibilities, particularly for those with jobs, were expressed. Nurses need to understand the importance of considering carers' involvement when assessing patients, and the need to address caregivers' continuing support and information needs. Problems navigating health and social care processes should be anticipated, and nurses can direct the carers to appropriate resources to meet their needs.

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