Skip to main content
. 2022 May 11;27(4):1241–1274. doi: 10.1111/bjhp.12597
Themes Frequency (n patients) Example quotations
Awareness of risk/safety
Discomfort and illness during or post‐transfusion 7 ‘there's always situations that I was here hours waiting for blood and I ended up receiving it, but the following day I was in bed all day’ (Patient 12, Aplastic Anaemia, Site 2)
Potential infection or reaction risk 5 ‘basically, you kind of just think, you know, ‘is this gonna be the transfusion that might cause me to have a reaction?’ or, ‘is this the unit that's going to cause something in the future?’ but you can't really live like that, so you don't really think about it too much really, it doesn't stop me having them’ (Patient 8, other Anaemia, Site 1)
No experienced negative consequences 5 ‘I feel quite good really, I’m not having any side‐effects or anything like that which is very good’ (Patient 6, Myelofibrosis female, Site 1)
Health risks from high iron levels 4 ‘because the more blood I receive, the more the iron level in my blood goes up’ (Patient 12, Aplastic Anaemia, Site 2)
Caution needed, blood should be used appropriately 2 ‘there's many, many, many issues of blood, you know, if the haemoglobin's dropped or loss of blood, or that sort of thing, but er, I think people need to be a bit more careful’ (Patient 8, other Anaemia, Site 1)
Health benefits
Boosting blood levels 8 ‘well normally it/ well, it depends, erm, how low the haemoglobin is, the lower it is then the benefit is quicker because you're being topped up but’ (Patient 14, Inherited Anaemia, inc Thalassemia, Site 2)
Keep going with daily life 7 ‘well I wouldn't be able to get about, I'd be fighting for breath and all that if I didn't have it, you know, I wouldn't be able to do anything I do now. I can walk about’ (Patient 7, Myelodysplasia, Site 1)
Relief of symptoms such as tiredness 7 ‘when I received blood transfusion after that, I rest a bit and then I feel strong but before I feel weak’ (Patient 10, other Anaemia, Site 2)
Anticipated benefits 6 ‘I just feel as though that if I got a transfusion with fresh blood, surely I’ve got to feel better from it, I think so’ (Patient 1, Myeloma, Site 1)
Patient convinced of benefit by significant others 3 ‘everyone was telling me I looked better and that in itself made me feel better as well I suppose’ (Patient 1, Myeloma, Site 1)
Can take time to feel benefit of transfusion 2 ‘this is a benefit, the blood, but sometimes it takes a while to kick in, it's like if you're taking medication from the doctor, sometimes it takes, erm, a while to kick in’ (Patient 11, Lymphoma (CLL) and a second haematological condition, Site 2)
Necessity
Transfusion prolonging life and aiding survival 11 ‘oh yes, it just seems to me as being essential, erm, as much as say needing oxygen in the air is an essential, without the transfusions I wouldn't be here’ (Patient 4, Aplastic Anaemia, Site 1)
Transfusions required as a current and long‐term supportive treatment 10 ‘they gave me two courses of ATG, it's an immunogloubulin … the second time, I didn't have any response. Since then, since, … I've been receiving transfusions’ (Patient 12, Aplastic Anaemia, Site 2)
Need established by HCPs and clinical indicators 8 ‘if it is lower than 80, they said I need a blood transfusion … sometimes it depends, they keep seeing the blood test, decided if I need to have a blood transfusion’ (Patient 10, other Anaemia, Site 2)
Need apparent through symptoms 8 ‘yeah, when it drops, I feel a bit tired, but/ you feel it, dizzy, a little bit dizzy, tiredness, shortness of breath, sometimes/ I try to manage it, but/’ (Patient 9, Acquired Haemolytic Anaemia, Site 2)
Speculation and doubt over pending transfusion prescription 7 ‘Erm, last week I had two units of blood ∙ but this week ∙ it's only like the platelets, so possibly next week it'll just be platelets and one unit of blood’ (Patient 2, Aplastic Anaemia, Site 1)
Negative emotions
No concerns or worries with transfusion 10 ‘no [concerns or worries], cause there's no point worrying about something I can't really do anything about’ (Patient 8, other Anaemia, Site 1)
Attempts to manage worries and fears 9 ‘so, it doesn't look, it looks ok for you for a minute, and then you start to think about something else but that one you have to be on the positive side all the time, maybe not keep saying ‘that's not good'‘ (Patient 9, Acquired Haemolytic Anaemia, Site 2)
Relaxed during transfusion appointments 5 ‘I come regularly, erm, to be honest it's a nice, this sounds really weird but, you know, it's a day where, I, I fully relax because I'm just having my blood and I'm not thinking of anything else’ (Patient 14, Inherited Anaemia, inc Thalassemia, Site 2)
Gratitude that transfusions possible 5 ‘I'm very grateful that there is blood available for me and other patients, erm, and I appreciate that hugely’ (Patient 14, Inherited Anaemia, inc Thalassemia, Site 2)
Receiving transfusions unpleasant 4 ‘everybody hates having them, they all hate the cannula's in’ (Patient 2, Aplastic Anaemia, Site 1)
Concern of transfusion dependency 4 ‘sometimes, erm, I feel scared … of course if you see blood, you think, you think to yourself that it's bad’ (Patient 10, other Anaemia, Site 2)
Positive emotions of not needing transfusion 2 ‘there was a wonderful telephone message and it said [Mr/Mrs surname], we don't want to see you today and so everyone cheered you know. I, I didn't come in, which was brilliant’ (Patient 4, Aplastic Anaemia, Site 1)
Perception that doctors dislike prescribing transfusions 1 ‘no, most of the doctors like, they, they always hate giving transfusions to someone …’ (Patient 9, Acquired Haemolytic Anaemia, Site 2)
Alternatives
Alternatives considered or already in use 7 ‘I was offered the main treatment for this condition, is the bone marrow transplant, but I, I'm not really keen to do that, cause it's, I've, erm, you know, the side effects of treatment …’ (Patient 12, Aplastic Anaemia, Site 2)
No alternatives, transfusion only option 5 ‘yeah, I would just fade away, yeah, cause there's nothing else that can help me’ (Patient 8, other Anaemia, Site 1)
Patient's body can correct depleted cells 3 ‘hopefully, erm, with erm, not needing platelets, might just be my body saying ‘I’ll have a go now’’ (Patient 4, Aplastic Anaemia, Site 1)
Patient preference for alternatives 3 ‘I wish they'd/ sometimes I wish that I didn't have to have it done. I wish they could just give you like a tablet and something like that’ (Patient 11, Lymphoma (CLL) and a second haematological condition, Site 2)
Involvement in decision making
Transfusion offered with patient involvement in choice 7 ‘yeah I had choice, I had a choice, yes I will go along with it, or no I won't bother. She gave me that choice as well, ∙ but I was led by her professional advice’ (Patient 1, Myeloma, Site 1)
Deferral of decision making to HCPs 7 ‘I just take it for granted that what they're asking me to do, or what they're doing is the correct thing to do’ (Patient 5, Myelodysplasia, Site 1)
Willing acceptance of transfusions 7 ‘I suppose I sort of took it in my stride really, think well if they're gonna help me, then you've gotta go along with it, haven't you really, that's how I feel’ (Patient 6, Myelofibrosis female, Site 1)
Confronted with limited or no choice 6 ‘They're the experts and they say so, and, like they said ‘if you don't want it, you just die’, ‘you choose to die’, they said, ‘don't bother coming in'‘ (Patient 7, Myelodysplasia, Site 1)
Decision making discussion positive 5 ‘[the consultant] does try to explain in simple terms, er, what [he/she] thinks, and the, the whole thing has been optimistic and upbeat … there's never been any pessimism at all, which has been terribly encouraging’ (Patient 4, Aplastic Anaemia, Site 1)
Routine ‘automatic’ treatment 3 ‘with it being, you know, a chronic condition, so very long‐term, so it's almost automatic regular treatment’ (Patient 14, Inherited Anaemia, inc Thalassemia, Site 2)
More frequent transfusions would be resisted 2 ‘I try to avoid as well because the more blood I receive, the more the iron level in my blood goes up’ (Patient 12, Aplastic Anaemia, Site 2)
Social connection
Patient involvement generally positive 6 ‘I think I’m quite involved in everything that does go on, erm, they do keep you ∙ up to date and everything’ (Patient 2, Aplastic Anaemia, Site 1)
Interaction with other patients 6 ‘we know a lot of people here so we have chats, things like that – so it's like a little family really’ (Patient 6, Myelofibrosis, Site 1)
Lack of interaction or activity during transfusions 5 ‘Well except in my case because being partially sighted, I can't read, can't see peoples’ faces, so er, I'm just sat here for about eight to ten hours, just looking at the wall more or less’ (Patient 5, Myelodysplasia, Site 1)
Curiosity and appreciation for blood donors 3 ‘you know ‘what do you think about the blood?’ and erm, I think, I think about the blood, that it came from somebody, just curious to know a little bit more about the person’ (Patient 4, Aplastic Anaemia, Site 1)
Support from family or primary care HCPs 2 ‘when we approach the doctor, my family member: ‘ask this one, ask this one’, he/she is like/ so, which is a big help, but like me, I don't know what to ask’ (Patient 10, other Anaemia, Site 2)
Burden
Transfusion part of routine life 7 ‘I carry on completely normal, normal life with the, you know, the odd transfusion every now and again, yeah’ (Patient 8, other Anaemia, Site 1)
Transfusions are inconvenient 5 ‘I think it's too often because being in hospital twice a week, minimum twice a week/ cause the week I receive blood, I have to come three times, and it's exhausting’ (Patient 12, Aplastic Anaemia, Site 2)
Life restrictions, travel 4 ‘it stops you from, if you ever wanted to go to another country, make a life in another country, it's a downside of it, the whole thing, be very difficult to do that’ (Patient 13, Inherited Anaemia, inc Thalassemia, Site 2)
Attendance not a great burden 4 ‘it's not a burden to me, I don't live too far away’ (Patient 4, Aplastic Anaemia, Site 1)
Distinguishing between blood products
Knowledge gaps for platelets 2 ‘I don't really understand what platelets do, I know, I know that they, that they repair the damage in the body, and works like that erm, ∙∙ well I am not a doctor am I’ (Patient 5, Myelodysplasia, Site 1)
Positive perception of platelets 2 ‘it's just that one's shorter than the other. The erm, platelets only take about 20 min to half an hour’ (Patient 2, Aplastic Anaemia, Site 1)
Distinction between non irradiated and irradiated blood 1 ‘all blood transfusions are different, but this is irradiated blood transfusion’ (Patient 11, Lymphoma (CLL) and a second haematological condition, Site 2)