Table 2.

Themes, subthemes and representative quotes from qualitative papers34, 35

Theme 1 Impact of diagnosis for now and the future

Subtheme 1 Healthcare practitioners not knowing – the distress on patients

‘Well, I'd never heard of it, and when the doctors themselves didn't know anything about it, it was all a bit scary’ (Patient 1)34

‘I definitely feel that the medical profession is not aware enough of Stevens–Johnson’ (internet description 195)35

‘I was amazed at the lack of knowledge on the part of the medical professionals. I clearly knew more about this disorder than anyone else I dealt with’ (internet description 67)35

‘…the doctor diagnosed me with things like chicken pox, measles and flea bites’ (internet description 136)35

‘…my mom looked frantically through a book of medical problems and came to Steven–Johnsons syndrome. It fit the description perfectly but when she asked the doctor if it could be that he said no, it's too rare’ (internet description 136)35

‘I'm totally clueless about SJS though. Am I now a carrier? I'm aware of the fact it was due to an allergic reaction to the drugs prescribed to me. I think I was extremely lucky as it only affected my mouth and not the rest of my body. Could anyone update me on what happens now with regards to SJS and me being a carrier? I'm aware I shouldn't use that medicine ever again’ (internet description 216)35

‘Well I felt bitter that I should not have been given cefalexin, but it was on my notes it said I'm allergic to penicillin…and there is a train of thought that cefalexin is closely related to penicillin, and she [the GP] shouldn't have given me that knowing my history, all my notes say no penicillin. I feel she [the GP] should have looked it up on the internet, she's got the means, she should have inquired rather than handing out willy‐nilly’ (patient 4)34

‘But the only thing now is, it's made me so scared of taking pills. I won't go to the doctors if I can help it now…um, you know if you got infections or anything like that, I won't go, and if I had to go, was forced to go, he gives me tablets, I ask him. I must be the worst person, the worst nightmare they've had! [smiles]. I ask him, then I ask the chemist [laughs], then I think, I'm not taking them! Just in case, you know? It's frightening’ (patient 1)34

‘I am still quite confused by this syndrome. Will it stay in her system forever? Since it is a syndrome, does it always come back and never go away? I don't know anymore and I am scared for my daughter, please help’ (internet description 71)35

Subtheme 2 Minimizing the risks

‘I stopped taking any medication unnecessarily, like paracetamol, penicillin, Nurofen, and Lockets [medicated lozenges], because they're like medicated inside aren't they…and, so I stopped taking all that kind of stuff…and I get really bad migraines as well, that will actually make me throw up, but I still don't take Nurofen…because of the chance’ (patient 7)34

‘I think it's just made me aware of everything really…um, if er, if new sweets have come on [to the market] or anything…from different foods, you think, knowing that it's stupid! But it does…you think about it!’ (patient 1)34

‘…in the meantime, we live one day at a time, suspicious of all meds, suspicious of all foods, and even suspicious of the air that James breathes…why, why, why???’ (internet description 92)35

Theme 2 Living with the psychosocial impact

Subtheme 1 Living with the distress

‘Yes…being depressed, yes, because as I said I get flashbacks, your memory goes but you remember certain things like when I'm having a shower or taking my top off or look in the mirror it all comes back again’ (patient 13)34

‘I will never forget. I feel traumatized and sometimes I feel very afraid that this might happen again’ (internet description 34)35

‘Yes because I'm scarred in my mind as well as scarred on my body…I have flashbacks to my illness…the doctors were great and the hospital was great…but what let me down was the aftercare because OK, I got home and had to go back for checkups, but I said what about my scars? And the doctor was great he said you're a big strong lad, you'll be able to cope, but really I don't’ (patient 13)34

Subtheme 2 Impact on self and others

‘My parents told me the doctors expected side‐effects to be along the lines of blindness, deafness or sterility. Thus far I can see and hear just fine, but I'm a 19‐year‐old virgin, and I still live with this fear in the back of my mind that I might not be able to have kids when I'm ready to’ (internet description 25)35

‘I gave birth to our son September 13, 2002 and am looking for information on heredity and drugs known to cause SJS, as everything I've read says it is genetic and blood relations have a greater chance of developing SJS. I cannot imagine anyone having to go through that, and I need to protect my son’ (internet description 70)35

‘…and the day when I'll be released from the hospital finally came…after one and a half months. What I looked like that time made people a little disgusted and scared. I still have scars, I didn't have nails, and only a little hair were left. I had no friends in elementary school’ (internet description 124)35

‘My friends left me alone. They did not want anything to do with me. There was this one word, which was following me every moment. That word was “disabled and handicapped” (internet description 1)35

‘So now, 13 years later, I am finally married to a very understanding wife but to be honest, our sex life is not what it could or should be simply because I cannot enjoy sex or achieve orgasm – lack of sensitivity on my part. You know, if my arms, feet, toes, fingers or legs would have blistered and ruptured, I could have dealt with that. I really feel that it has left some long‐term effects that I will never overcome’ (internet description 79)35

‘The fever comes and goes. I asked her [the doctor] to check my genital area as no other doctor has. She ran a full battery of tests and reviewed the lab results from my ER visit the night before. The blisters are now covering my lips and mouth, down my throat, in my ears, nose and vagina. She tested me for every known STD. After enduring an extremely painful vaginal exam, she told me she wanted to treat me for herpes. As you can imagine, this has caused great stress on my marriage’ (internet description 133)35

‘I could see the look of disgust on the face of my aunt and my wife and the visitors for what was happening to me. Everyone, who saw me, could not believe the way I looked. Even my kids, when they visited me, could not recognize me as if I had turned into a monster’ (internet description 73)35

SJS, Steven–Johnson syndrome; GP, general practitioner; ER, emergency room; STD, sexually transmitted disease.