Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study

Figures & data

Table I Characteristics of the sample according to the variables.

Country	UK	USA	Total
Therapy
Prophylaxis	6	5	11
On demand	1	3	4
Both	2	2	4
Age group
1 (18–30)	4	4	8
2 (31–50)	3	6	9
3 (51–70)	2	0	2
HIV and/or HCV
Yes	2	6	8
No	7	4	11
Family situation
Single	6	6	12
Dating	2	1	3
Married	1	0	1
Married with Children	0	3	3
Total	9	10	19

Figure 1.  Factorial plane, with labelled factorial polarities, and positions of themes and variables.

Table II Cluster 1 “Growing up and feeling different from others, even within own family.”

Weight	31.92% (406 sentences)
Keywords and χ^2a	my (31.05), condition (29.33), parents (24.60), HIV (20.58), young (18.97), severity (18.76), play (17.83), think (15.94), haemophilia (15.89), brother (15.74), early (15.41), hospital (15.36), understand (15.28), teenager (15.27), blood (14.75), mom (14.27), children (14.11), wrong (13.56), talk about (11.38), together (10.14), sure (10.12), age (9.86), support (9.33), spend (8.66), impact (8.65), unique (8.55), frame (8.55), remember (8.12), time (8.02), college (7.68), school (7.60), grow up (7.60), the others (7.22), matter (6.87), life (6.82), different (6.82), mum (6.62), dad (6.51), football (5.98), careful (5.87), feel (5.86), day (5.71), family (5.64), take care (5.57), listen (5.57), old (5.38), cotton wool (5.34), share (5.27), expect (5.27), failed (5.05), worst (5.05) annoyance (5.05), behind (5.03), effects (5.03), kick (5.03), be able (4.47), primary school (4.41) anxiety (4.14)
Extracts	«I think that as I am the younger brother and as I had haemophilia, I think that my parents put a lot more emphasis on taking care of me when I was younger, whereas my brother probably needed some of that attention and maybe he missed out on that (US, Age group 1, Prophylaxis, Single, without HIV/HCV)». «One teacher poked me in the back and I got covered in bruises. My mum went and spoke to the school. Communication was poor when I was a child. The haemophilia society was helpful. Speaking with other parents who were bleak about the condition, they said we would be crippled by 30. Professor said not to treat us much differently (UK, Age group 2, Prophylaxis, Single, without HIV/HCV)». «I have a feeling indirectly it has impacted our relationship. Now obviously we are older and we talk well and everything, but when we were younger if he would punch me as any brother would do to any brother and then my parents would go: “he has got haemophilia, are you crazy?” (US, Age group 1, Prophylaxis, Single, without HIV/HCV)».

^aThe words are listed in the order of decreasing associative value (χ² in brackets).

Table III Cluster 2 “Cognitive strategies to manage the illness and find resources.”

Weight	23.58% (300 sentences)
Keywords and χ^2a	call (46.08), read (43.20), clinic (39.58), explain (32.86), on-demand (27.90), ask (27.55), nurse (27.22), study (26.80), camp (25.19), factor (24.82), infusion (23.26), work (22.54), learn (19.29), consultant (18.80), treatment (15.41), doctor (15.33), research (14.86), local (1.86), F8 (14.86), dose (14.09), prophylaxis (13.70), source (13.00), treatment centre (12.69), N7 (12.04), emergency room (12.04), needs (11.94), treat (11.42), good (11.41), answer (11.16), patients (10.84), product (10.62), insurance (10.35), pay (9.87), medication (9.71), company (9.33), recombinant (9.33), inhibitor (9.02), physician (8.93), early treatment (8.86), how to do (8.84), break (8.84), money (8.23), summer (7.43), aids (7.41), social worker (7.40), question (7.40), needs (6.94), support group (6.62), country (6.20), crisis (6.20), relationship (5.94), calculate (5.88), on line (5.88), Sunday (5.88), national (5.88), Europe (5.88), Community (5.26), know how (4.48)
Extracts	«I see the social worker, the nurse, the haematologist, the dentist, the physiotherapist, the orthopaedic surgeon and somebody else […]. At the 3 o'clock in the morning when you need to infuse and you can't get into a vein, you have to call the treatment centre (US, Age group 2, Prophylaxis, Single, with HIV/HCV)». «It has been explained to me pretty thoroughly and also I do a lot of my own research online just to read what other people are saying. Just to actually read research per se. From all those sources, I definitely know pretty much as much as my doctor (US, Age group 1, On-demand, Dating, with HIV/HCV)». «Actually they [HCPs] didn't have to do a lot of explaining. I read the patient insert because of my medical background I understood exactly what it was saying. I knew how to calculate my own dose. The little things that I didn't know were … I understood that you needed to take the medication as soon as possible, but there are certain things, such as: why? (US, Age group 2, Prophylaxis, Single, with HIV/HCV)».

^aThe words are listed in the order of decreasing associative value (χ² in brackets).

Table IV Cluster 3 “Illness as disability and stressor event.”

Weight	20.60% (262 sentences)
Keywords and χ^2a	pain (75.29), bleed (67.55), knee (66.51), joint (64.11), bad (57.64), big (37.,91), week (31.90), muscle (29.15), injury (26.32), damage (26.32), heal (23.23), ankles (18.43), happen (17.60), tolerance (15.46), codeine (15.46), car (15.04), target (15.04), month (14.78), calf (14.56), series (14.50), health (14.40), hit (14.28), walk (14.04), worse (13.85), disability (13.46), physical (12.76), difficult (12.76), arthritic (11.76), recover (11.76), allowance (10.83), limit (10.61), problem (10.59), mobility (9.65), frustration (8.87), day (8.82), fit (8.64), minute (8.64), serious (8.56), worry (8.45), deal with (8.15), catch up (7.82), swollen (7.82), stress (7.81), painkillers (7.37), bend (7.26), feel down (7.26), wheelchair (7.07), broke (6.77), daily (6.77), elbow (6.63), disappointment (6.46), bruise (6.40), feet (5.74), legs (5.45), treatment at home (5.24), routine (4.76), morphine (4.76), pills (4.76)
Extracts	«At 21, I had a really bad bleed, and it became a target joint, and I just had bleed after bleed after bleed. It was no longer a healthy joint, not by far […]. And so that was pretty bad, and when I had the series of bleeds I couldn't walk (US, Age group 1, On-demand, Dating, with HIV/HCV)». « […] the doctor let me go on to home to do the treatment. He didn't give me any painkillers unless it was absolutely necessary. The high doses of morphine they give me frightened me. When I was 11, I had a painful bleed in the Soleus muscle and I tried morphine for a few days, but I felt awful after that (UK, Age group 3, On-demand, Single, without HIV/HCV)». «I am unemployed, limited by joint damage. I am 24 years old: not an age to be sat like this doing nothing. Just had a left ankle fixed, right ankle fused, right knee replaced, looking to have elbow surgery (UK, Age group 1, Prophylaxis, Dating, without HIV/HCV)».

^aThe words are listed in the order of decreasing associative value (χ² in brackets).

Table V Cluster 4 “Learn to manage emotions and action toward normality.”

Weight	15.80% (201 sentences)
Keywords and χ^2a	end up (49.65), come back (25.16), mean (24.42), bottle (20.66), comfortable (18.18), hard (17.89), learn (17.53), able (16.76), home (15.93), little (15.93), fine (14.84), water (14.79), walk (14.65), night (14.28), feelings (10.72), computer (10.56), high (10.24), shot (9.09), limp (9.04), neighbour (9.04), treatment centre (8.65), allow (8.65), leave (8.33), protective (8.33), high school (7.78), hot (7.37), actual (7.37), feel good (7.37), syringe (7.37), smaller (7.37), skate (7.37), wheelchair (7.09), social (7.07), mind (7.06), vein (6.68), summer (6.68), know how (6.68), legs (6.41), important (6.34), myself (6.33), normal (6.22), responsibility (6.09), cost (5.58), cope (5.58), crutches (5.29), receive (5.29), God (5.29), start (5.14), needle (4.46), activities (4.46), build (4.43), each other (4.43), emotions (4.31), insurance (4.21), relationship (4.18), attention (3.87), office (3.87), regimen (3.87)
Extracts	«After that, once I started getting my actual vein that was another huge success point. It was such a huge turnaround that I was able to do my medicine by myself (US, Age group 2, On-demand, Married with children, with HIV/HCV)». «Everyone was like a little more mature, and I went to a pretty good high school, so maybe people didn't have an obnoxious outlook on diseases. They were just all pretty normal about it. So that was fine (US, Age group 1, On-demand, Dating, with HIV/HCV)». «Come back on my feet when I was probably about 16 getting out of the wheelchair that's a huge one. I had intracranial bleeding I had to learn how to walk and talk and everything again. Just the recovery from head bleeds just learning the motor functions again (US, Age group 2, On-demand, Married with children, with HIV/HCV)».

^aThe words are listed in the order of decreasing associative value (χ² in brackets).

Table VI Cluster 5 “A tremendous mortal game: the discovery of genetic and family history.”

Weight	8,10% (103 sentences)
Keywords and χ^2a	mother (159.57), carrier (127.15), family (113.92), father (104.62), sister (103.17), uncle (83.48), mom (82.96), side (69.01), daughter (68.20), boy (51.40), grandparents (46.80), dad (37.44), haemophilic (34.87), siblings (34.87), brother (31.99), passed away (28.58), death (26.67), scared (25.56), raise (24.13), India (23.78), generation (22.75), cousin (18.99), diagnosis (18.99), family history (18.17), son (18.17), children (17.15), test (16.92), sick (14.22), pissed (14.22), nobody (11.91), expect (11.91), born (11.67), long time (11.42), share (11.06), divorce (9.46), loss (9.46), ready (9.46), blame (9.35), job company (7.75), treat (7.75), bled (7.75), close (to someone) (7.32), genetic (6.86), persistent (6.68), negative (6.49), found out (6.49), grow up (6.43), hell (5.48), tremendous (5.15), possibility (4.65), crazy (4.65), hide (4.65), lucky (4.65), girl (4.65), rare (3.96), horrible (3.96), funny (3.96), game (3.96)
Extracts	«As far as I know, my great grandfather on my mother's side had haemophilia. That's pretty much as far as history of haemophilia goes in my family, at least as far as we know. I guess there have been daughters, daughters carriers and then a boy. I was the lucky one (US, Age group 1, On-demand, Dating, with HIV/HCV)». «Then when they came back later and gave me the carrier testing, then they found out that my mom was a carrier. So then they come back and tried to check with the uncles in the family and because at that time the older generations, the African American, they wouldn't talk about certain things. There were a couple of uncles who passed away, but none knew of what or why (US, Age group 2, Prophylaxis, Single, with HIV/HCV)». «My younger brother is deceased. My others to sisters are still alive and functional. My mom is still alive, my dad is deceased. I am divorced. I have no children. I am the only person in my immediate family that has it. I had three nephews who were haemophiliacs, and they are all deceased (US, Age group 2, Prophylaxis, Single, with HIV/HCV)».

^aThe words are listed in the order of decreasing associative value (χ² in brackets).