Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome
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Published:2023-11-20
Issue:1
Volume:33
Page:
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ISSN:1057-9249
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Container-title:Psycho-Oncology
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language:en
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Short-container-title:Psycho-Oncology
Author:
Roydhouse Jessica1ORCID,
Thompson Deborah2,
Nicholson Louise2,
Harrup Rosemary2,
Campbell Julie1,
Jose Kim1
Affiliation:
1. Menzies Institute for Medical Research University of Tasmania Hobart Tasmania Australia
2. Royal Hobart Hospital Hobart Tasmania Australia
Abstract
AbstractObjectiveMultiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia.MethodsExploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face‐to‐face in 2022. Thematic analysis was used.ResultsTen groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome.ConclusionFuture work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.
Funder
Royal Hobart Hospital Research Foundation
Subject
Psychiatry and Mental health,Oncology,Experimental and Cognitive Psychology