Abstract
<h3>Introduction</h3> Myeloma Australia's support services have always been available to carers of people living with myeloma. However, we recognised a need to offer a space just for carers to help them cope with the unique issues of a complex disease, treatment side effects, supportive care needs and the impact of each relapse on their loved one. The aim of this project was to understand the needs of carers in the Australian myeloma community to guide development of an appropriate carer-specific national information and support group program. <h3>Methods</h3> A 14-question survey was emailed to the Myeloma Australia national database to gauge carer interest, priorities and needs. Four pilot information and support groups were held online in two Australian states over a two month period. Each group was facilitated by two myeloma support nurses. Attendees and facilitators evaluated sessions according to content, time of day and length of meeting. Data collection from the survey, feedback from pilot group attendees and a literature review were interpreted using thematic analysis to guide the program development. <h3>Results</h3> 144 survey responses were received in which 70% expressed interest in attending an information and support group. 17 carers and 6 facilitators evaluated the four pilot online information and support groups. Carers identified feelings of loneliness, helplessness, worry and exhaustion in the survey. Themes emergent from carer engagement in the study and review of local and international literature included priorities of gaining knowledge, developing coping strategies and the desire to share with others in a similar situation. <h3>Conclusion</h3> There are significant, unmet needs for carers of myeloma patients. Myeloma Australia has now launched carer information and support groups in all states. Future directions include development of resources for carers of people living with myeloma in Australia and collaboration with external organisations to expand national carer service provision.
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