Background
Methods
Study design
Study participants and recruitment
Groups | Setting |
---|---|
Group 1 | |
Gynaegologist | Primary Care Facility (2) |
Private Practice (1) | |
District Hospital (1) | |
Group 2 | |
Midwifes | Independent (2) |
Private Practice (1) | |
Group 3 | |
PMR professionals | Outpatient Clinic (1) |
SCI Rehab Clinic (2) | |
University Hospital (1) | |
Paraplegic Association (1) | |
Group 4 | |
Urologists | Outpatient Clinic (2) |
Group 5 | |
Peer counselor | SCI Rehab Clinic (1) |
Pseudonym | Function | Field of expertise | Setting | Experience with pregnant women with SCI | |
---|---|---|---|---|---|
1 | Matthias Gerber | Senior physician | Gynaecology | District Hospital | Treatment of patients during pregnancy who have been sent to the hospital from the surrounding area and SCI centre; gained knowledge through interdisciplinary exchange of knowledge with colleagues and high interest in SCI; practice located close to an SCI centre; participates in workshops about sexuality with SCI. |
2 | Michael Brunner | Chief resident | Urology | SCI Outpatient Clinic | Treatment of patients during pregnancy for the past 7 years; high competence in treating urological problems in SCI patients. |
3 | Anton Denner | Online-Doctor | Spinal Cord Medicine/Internist | Paraplegic Association | Online consultations for SCI-related questions; no gynaecological knowledge. |
4 | Nicole Müller | Senior physician | Spinal Cord Medicine/ Internist | SCI Rehab Clinic | Treatment of 1 patient during pregnancy; longstanding experience in treating SCI patients; patient suffered from SCI right after getting pregnant; discussions about treatment with her team and the treating gynaecologist. |
5 | Martin Roggo | Co-Chief resident | Gynaecology | Primary care facility | Treatment of 2 disabled patients during pregnancy; one doesn’t depend on a wheelchair anymore. |
6 | Franziska Schneider | Midwife | Midwife | Private Practice | Treatment of 1 patient during pregnancy and birth; work experience: 5 years. |
7 | Julia Peter | Chief resident | Spinal Cord Medicine | University Hospital | Treated and accompanied 10 patients during pregnancy; longstanding experience in treating SCI patients; comparatively less expertise in gynaecology. |
8 | Barbara Jung | Senior physician | Spinal Cord Medicine | SCI Rehab Clinic | Treatment of several patients during pregnancy; last treatment of pregnant women with SCI was a couple of years ago. |
9 | Anna Weiss | Midwife | Midwife | Independent/Primary care facility | Treatment of 1 patient during pregnancy; work experience: 13 years; wrote a thesis about pregnant women with SCI by interviewing 2 women with SCI. |
10 | Jasmin Rieger | Peer Counsellor | Peer counselor | SCI Outpatient Clinic | Accompanied patients during pregnancy as a peer, experienced pregnancy and SCI herself; works in an SCI environment; high interdisciplinary exchange with colleagues and other peers; conducts workshops on sexuality and SCI on a regular basis. |
11 | Katharina Bach | Midwife | Midwife | Independent | Treatment of 1 patient during pregnancy; patient was a friend and she accompanied her mainly during puerperal visits and had some contact during pregnancy; work experience: 5 years; knows the SCI community well. |
12 | Elisabeth Frey | Chief resident | Gynaecology | Primary care facility | Treatment of 5–10 patients during pregnancy; work experience: 30 years in larger clinics in Switzerland and other countries; gained knowledge about SCI through interdisciplinary exchange with colleagues and literature. |
13 | Georg Fischer | Head of SCI Outpatient Clinic | Spinal Cord Medicine | SCI Outpatient Clinic | Accompanied patients during pregnancy; no knowledge in gynaecology; treated SCI-related problems and consulted patients and gynaecologists. |
14 | Alexander Brandt | Senior physician | Urology | SCI Outpatient Clinic | Treatment of 3 patients during pregnancy; urologist since 6 years; worked in Switzerland and other countries in SCI clinics; treated SCI-related problems and diagnosed one pregnancy during examination for SCI-related problems. |
15 | Jonathan Steiner | Senior physician | Gynaecology | Private Practice/External physician with hospital affiliation | Treatment of 1 patient during pregnancy; knowledge gained mainly through literature and online research. |
Data analyses
Results
Causal conditions
‘I think it is [the event] simply too rare. There is no one who really knows how it works best.’ Jonathan Steiner, gynaecologist
‘…that (pregnant women with SCI) is (a) relatively rare (phenomenon), and I believe that knowledge isn’t so abundant among urologists and gynaecologists that one can say that everybody can treat it.’ Alexander Brand, urologist
Phenomenon
‘One notices (it) a bit among midwives. I also noticed it among physicians, that enormous fear or maybe ignorance exists about caring for the women. I wish that it would be actually accepted as an open topic. That the women (in wheelchairs) would be greeted just as openly as women who are not in a wheelchair. Because they deserve exactly the same care as the others. One need not be afraid.’ Anna Weiss, midwife
‘I can remember one (pregnant woman with SCI) quite well who asked me how a prenatal exam is carried out because the gynaecologists did not dare to conduct the gynaecological examination. She was tetraplegic, and they were afraid that they would induce autonomic dysregulation if they performed a vaginal examination.’ Michael Brunner, urologist
Contextual and intervening conditions
Health professionals
Differences in willingness to contribute to care delivery for pregnant women with SCI
‘…among gynaecologists, reservations apparently exist against treating such cases. An affected woman told me that she had difficulty finding a gynaecologist who said that he felt competent to treat someone sitting in a wheelchair and being pregnant.’ Michael Brunner, urologist
‘PMR professionals don’t only treat urologic problems—I have also treated acute cases of paraplegia. I have seen patients with decubitus; I have also treated problems in internal medicine among paraplegics. I think that medical science is a broad field and urologists are urologists and gynaecologists are gynaecologists. Period.’ Julia Peter, PMR professional
‘…the PMR professionals told me where they saw the problem from their point of view, and I tried to translate that for myself. When the PMR professionals said, “spasticity or vegetative dystonia”, I considered what that could mean for the pregnancy. I tried to observe the foetal development and the woman with SCI separately. I quickly noticed that the SCI actually had relatively little importance in the pregnancy and foetal development.’ Matthias Gerber, gynaecologist
‘It is usually very interesting for the gynaecologists to care for such a woman, and they want to keep the woman. Self-interest also plays a role.’ Anna Weiss, midwife
‘I believe they are afraid of complications. Of complications with autonomic hyperreflexia or, for example, that complications would arise with the paraplegia, that there would somehow be a rupture. I think it is easy: if someone has no knowledge about it, one also is afraid. I can, of course, understand that.’ Anna Weiss, midwife‘Anaesthesiologists know what to do during a caesarean section. In contrast, SCI with lumbar anaesthesia plus no sensitivity, I think that is just too precarious for them.’ Jasmin Rieger, midwife
Differences in the willingness to cooperate
‘No. I don’t speak to the gynaecologists. There is no exchange. If any, then with the doctors (PMR professionals) here at the centre.’ Jasmin Rieger, peer counselor‘That was more one way, or it was at least not interdisciplinary. It wasn’t that a gynaecologist called me and said, “I have a patient here”, or that I spoke with the gynaecologist afterwards. The three patients whom I remember just now took things into their own hands—the communication. They got advice from me and then said, “Good, now I know, that’s enough.” The gynaecologist never called me about these patients, and I didn’t call the gynaecologist.’ Michael Brunner, urologist
‘An epidural anaesthesia does not present a problem for the anaesthetist, and the woman’s handicap is also not a problem for the midwife. Of course we discussed it.’ Matthias Gerber, gynaecologist‘Completely normal; there was a midwife during the birth, and as I said, caesarean section. We had arranged a discussion with the anaesthetist in advance. When there is a special existing disease, we don’t do that only a day before the planned caesarean section, but we plan things a little better in advance.’ Martin Roggo, gynaecologist
Differences in the willingness to integrate competence of women with SCI in the care process
‘What occurred to me (is that) women who have given birth and sit in a wheelchair, they are like a mobile library. They know so much, one can really suck up their knowledge. I consider them to be the best sources of information.’ Anna Weiss, midwife
Standards and scientific evidence
‘No, there is no knowledge and very little literature available. So, if you care for a woman with SCI, then you need to inform yourself.’ Anna Weiss, midwife‘…urologists who are allowed to participate in the care of such patients do that with a good conscience—or at least I hope so. But nobody makes it transparent. There are, however, certain cooperation’s—the beginning of an exchange about different things. But there is no compilation of knowledge to provide a better basis for decision making.’ Michael Brunner, urologist
‘Which therapies exist? What is allowed, and what is not? Where do we have experience, and where do we have none? I believe we simply have little experience. There are few statistically confirmed data on what is good and what is not good. We have to honestly admit that.’ Alexander Brand, urologist
Healthcare organizations
‘Yes, that’s right, we don’t have scales.’ Martin Roggo, gynaecologist‘Speaking of toilets – we do have a special toilet for people with disabilities. It isn’t on the same floor, but it is on a floor below.’ Matthias Gerber, gynaecologist
‘There isn’t anyone with exact knowledge about these things. Everyone knows a little bit. It is a very, very specialised topic. But there is no competent person who has knowledge of every aspect.’‘We don’t have gynaecological equipment here, that’s right. But even if we had it, a specialist from gynaecology would have to do it.’ Nicole Müller, PMR professional‘There is good access, one can use the examination rooms well, but then a gynaecologist is required who ideally would, for example, conduct preventive examinations. We don’t have that here, and not everyone can bring her own gynaecologist here. When a pregnant woman comes here and I want to do a urologic examination, it is absolutely no problem. But if I am not sure if there is also a gynaecologic problem, I cannot find that out here. Then I send her back to her treating gynaecologist, but I do not know and cannot influence how access is there, whether barriers exist to reaching the service. Sure, it’s not a problem here, but there is no gynaecologist here.’ Michael Brunner, urologist
Strategy
Strategies applied to cope with uncertainty
Protective concerned attitude
‘In principle, I would reduce antibiotic treatment as much as possible. Since the problem is common, and we see that even now, regardless of pregnancy, many patients with bacteriuria are treated, despite it being unnecessary. It is simply done; there are bacteria in the urine, and they are treated with an antibiotic. In a pregnant woman, especially if she is asymptomatic and shows no signs of a really complicated ascending infection, I would not give a long-term prophylaxis during the pregnancy.’ Alexander Brandt, urologist
‘You know, in the worst case I simply try to build up a good working relationship with the gynaecologists. If the woman feels insecure, we have to discuss it. If possible, all three of us; otherwise only with the gynaecologists. We usually come up with a good solution, and things turn out well.’‘I am always reassured when I have spoken to him (the gynaecologist) and when I see that he understands the problems or the possible problems.’ Georg Fischer, PMR professional
‘What I have learned and my experience, in principle, I owe it to the patients. From the very beginning, my patients have told me things; I tried to remember and apply this to the next patients. All the tips and tricks I have learned have all been from the patients.’ Georg Fischer, PMR professional‘In all the package inserts of drugs to treat bladder spasticity, it says that they are contraindicated in pregnancy. If you inform yourself more thoroughly and read up, there are apparently certain periods during pregnancy when this medication caused something in animal experiments. If you compare the doses that were given to the animals to what is administered to humans, the animals got higher doses, i.e. it says apodictically that one must not give it, but if you look at what that’s based on and take the trouble to do that for every single medicine, you will find out that that it is not apodictically true. But these data are very, very difficult to obtain; there is hardly any transparency, e.g. from the manufacturers. I really took the effort until I got any data at all from the different manufacturers. And then you have to see to what degree these data from animal experiments can be transferred to humans. There is little cooperation because there is also little interest on the part of the pharmaceutical companies that produce the medication.’ Michael Brunner, urologist
‘No big deal’ attitude
‘…I consider the pregnancy as such to be unproblematic. She is just a patient like any other.’ Jonathan Steiner, gynaecologistInterviewer: ‘Did she have several, did she have more frequent ultrasounds?’Interviewee: ‘No, absolutely not.’Interviewer: ‘You may have been confronted with diverse secondary complications, like urologic problems and problems with bowel management. How did you solve these problems? Did she simply inform you of them, or did she consult someone else, or how did you handle the situation?’Interviewee: ‘It was never actually brought up.’ Jonathan Steiner, gynaecologist‘I mention it when I notice that it presents a problem for the woman. I do not do it on principle, in one fell swoop, like with you now, that you hear everything at once.’ Elisabeth Frey, gynaecologist‘One need not necessarily communicate the problems to the patient, perhaps not to frighten her, but you have to have it in the back of your head and can then gradually integrate it into the process if need be.’ Jonathan Steiner, gynaecologist
Precautionary attitude
‘You are already relatively restrictive in normal pregnancies, or you will treat every pregnant woman with even the slightest sign of a urinary tract infection. This is truer for women with SCI. Then you are actually even stricter.’ Nicole Müller, PMR professional‘We naturally see these patients at shorter intervals, by shorter I mean we perform a control check-up every 3–4 weeks to have the parameters better under control.’ Martin Schüssler, gynaecologist
Consequences
Withstanding or handing over uncertainty
‘What else can you do? So that I don’t just stand there like a fool. You thought over what you would do for a bladder infection. Can you do something preventive? Can you do something against obstipation? Can you do something to reduce the risk of thrombosis? And so on.’ Matthais Gerber, gynaecologist‘For patients who have questions concerning bladder-sedating medication, there is no reliable answer because all these medicaments carry a theoretical risk, which must be prevented during pregnancy. I always gave a conscientious answer according to my best knowledge after consulting with other urologists. That satisfied the patients, and nothing happened to the children. That’s the best we can say.’ Alexander Brandt, urologist
‘…just someone who can share his experience or even just cares for the women from beginning until the end. Without upcoming doubts or uncertainty. Or, as I said, somebody who has the knowledge and can pass it on or spread the knowledge. That would be great!’ Anna White, midwife
Actor in a fragmented care process
‘The gynaecologist will tell her something about pregnancy. We will tell her something urologic and maybe something about possible complications. But we do not sit down together, and then she’s there and asks herself, ‘What should I do now?’ The gynaecologist said everything is easy going just like anybody else, although maybe he has only seen one or two such women in his life. In principle we say that, as far as we know, the women we have seen are fine, but there are these and these risks.’ Alexander Brand, urologist
Call for interdisciplinary collaboration
‘Pregnancy and paraplegia, that’s not an everyday situation. Not every gynaecologist can deal with it, maybe not even every urologist. It is not very common even in specialised centres for SCI. I believe, perhaps an idea would be if one simply said, ‘OK, let’s combine them in a certain centre’….because I certainly lack some gynaecological aspects, I have to admit it. I know I cannot administrate that drug, I should not prescribe it. We should simply collaborate together, also for infections. The gynaecologist may use a dipstick and say, ‘Good, it’s positive; we have to treat her. I must give her a prophylaxis.’ We see that differently from a urologic point of view. I believe it would make sense to say, ‘OK, we put them all together in a centre and generate experience in a centre for that kind of thing.” Alexander Brand, urologist‘I also believe that gynaecologists should know that they are dealing with special cases and that they also (should) enter into collaboration with rehabilitation centres. I do not think that someone in an outpatient clinic, a general practitioner, can do that. I do not think so. But, as I said, we are not gynaecologists, i.e., patients also need a gynaecologist. There simply must be cooperation, also after pregnancy.’ Julia Peter, PMR professional