Table 3 Illustrative data extracts from theme Q1: ‘Restricted as to what I can do’
Psychological impact of restricted activities—frustration | “I think that my inability to pursue all of my normal activities has had an impact on my wife, both in the fact that we shared most of those interests and activities, but also psychologically that I'm less tolerant and a grumpier person to be around because of those restrictions.”—P3 |
“It's quite frustrating that I can't do the things that I want to do because I get short of breath and fatigue and nausea and things like that.”—P5 | |
Significant impact on activities of daily life | Interviewer: how do you think the GVHD has affected your quality of life? “So, the GVHD completely wrecked it. When I was suffering particularly badly I was literally unable to move much. I work at home a lot, so I was unable to move between my bedroom, my office, which is just, you know, ten/fifteen steps away. I was unable to drive, to do, like I say, basic things around the house, even… My mother came to visit; I was unable to even take her on a short walk around the village, so it really impacted me in terms of my energy levels and my focus levels.”—P6 |
Restrictions to normal daily activities | “GVHD has changed a lot of my day to day actions in terms of trying to limit sun exposure… I'm sitting around indoors either reading or watching films or doing sort of indoor things that I would never have done in good weather before.”—P3 |
“I'd just have to just slow the walk down from being like, like I say, 5 min I used to walk up from town; now it takes me 35 min each way… I've just got to put… add it to my mind wherever I walk basically, whichever way I go; whatever I do.”—P4 | |
“I was a pretty athletic person. I used to play tennis, football, I used to play pool for my local pub with my best friends and my friends and my brother in law. And I used to drive… driving was my hobby… Whereas now I just… I can barely walk about sort of ten metres and I'm out of breath. I can't do any more sport cos my ankles swell up at the slightest bit when I start walking.”—P4 | |
Restrictions due to treatment side-effects | “Well the Tacrolimus … my hands are very shaky; almost Parkinsonian. It’s been as it's almost impossible for me to do anything handwritten. It makes… means I make a lot of errors on my iPhone when I'm trying to text or send emails on my iPhone.”—P8 |
Impact on occupation | “My office is normally only 7 min walk away—that’s still a bit too far for me to go. And I have a three-storey staircase to the top of the building where my office is located. And I haven't… you know, I've been too fatigued to do that, to say nothing of the fact that up until relatively recently, as I said earlier, my cognitive bandwidth is severely limited.”—P8 |
Restrictions due to tiredness or fatigue | “There is days where it’s just no strength and I have to sit and literally get my recliner right up the ankles and as far as I can get it.”—P4 |
“I don’t want to over exert myself because if I do that, the next day I'm like completely shattered and I really can't do anything, if you know what I mean; I just feel too tired to actually do anything at all.”—P5 | |
“For several weeks I was barely able to do much other than lie in, or on, the bed feeling deeply fatigued.”—P8 | |
Adapting to treatment regime | “I can do normal life, except just have to be careful with the sunlight and putting the ointment in the evening.”—P7 |