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Table 2 Supporting and aggravating factors influencing caregiver’s adjustment process

From: Experiences of caregivers of children with spinal muscular atrophy participating in the expanded access program for nusinersen: a longitudinal qualitative study

Supporting Good information “We got all the information [at the Medical Center]. We felt well informed. Really. We spoke about that he will not become a soccer playing child, not going to happen. That’s okay. And that you can’t really say what will happen. The possible side effects were presented very, very clearly in the information sheet.” (2c 179ff)
Good relationships “They [doctors on the floor] are asking how it is going? Do you think it is working? How did he do after the puncture? It is a good mixture, they are hopeful, too. But, they are also realistic. They are listening neutrally. No one is promising too much, but they are not pessimistic either.”
Recurring processes during treatment in the hospital “The first time it was like “is it going to work? How will he tolerate the medication? The lumbar puncture? Then it worked, and the second time again. That was such a liberating feeling! And now it just works. My wife knows the hospital, I know the hospital. Everyone knows what to do.”(2aa 894ff)
Aggravating Lack of information regarding EAP launch “No one could say how long it would take to approve the program. And we didn’t know how [the child] would do when it started.” (1a 74ff)
Lack of information regarding enrollment and criteria “There has to be someone who oversees the whole program and who takes some leadership, that not everyone can do what he thinks is right. Well, I find this hurtful for parents.”(5a 941ff)
Concerns regarding continuation of treatment “If something happens, like a severe side effect for example, they can close down the whole program, just like that.” (5c 1322ff)