The work of living with a rare cancer: multiple myeloma.

摘要: Aim To report findings from a qualitative study of the experiences long-term survivors multiple myeloma. Background Multiple Myeloma is malignant disease bone marrow. Until recently, it was rapidly fatal. Although remains incurable, people diagnosed with are living longer on average, largely due to new treatments, some which have onerous side effects. Design Prospective descriptive study. Method A series 47 in-depth interviews were conducted at 6–12 month intervals over 18 months in 2008–2010 10 myeloma and their primary support person. Interviews analysed using constant comparative method (Grounded Theory). Findings To adapt effects both ongoing medical participants undertook extensive ‘illness work’. Most this work fell into two broad categories. Risk aimed mitigate risks well-being person his/her carer. Emotion manage feelings self others protracted cycle remission relapse. Conclusion The experience increasingly characterized by issues associated chronic ‘survivorship’. It important for nurses working understand overwhelming nature illness context. Nurses can put place supportive measures address main ‘drivers’ work: risk (including carers) recurrent need emotions social interactions.