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Table 7 Illustrative data extracts from sub-theme Q5: Adapting to the sick role

From: “Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service

Consulting with healthcare

“Until I went to the doctors and found I had this MDS/MPN crossover, you know, I hardly ever went to the doctors. So, you know, I was never one for taking pills at any sort of regular basis.”—P2

Diagnosis was a shock

“Like how serious the diagnosis was, like when we were told what the life expectancy was without treatment and the risk of dying and things like that, you know, quite a shock.”—P5

Challenges adapting

“It's very tedious. I get very fed up with having to do the application of the ointment. You know, they keep changing the dosages of Tacrolimus and the prednisolone, and so keeping track of that, you know, I have to remember now… this week how many, you know, how many milligrams of each am I supposed to be taking when … So, and, you know, it's a constant reminder of my condition.”—P8

“Psychological’s been quite… there's day where you just want to be a person. I just think, you know, 'why, what have I done?'”—P4