Background
Methods
Study design
Participants
Data collection
Analyses
Theoretical model
Analysis process
Rigor
Results
Participants’ characteristics
Pseudonym | Age by interview | Marital status by interview | Number of children before SCI after SCI | TSI (y) at birth of 1st child | SCI level | Education | Education years | Working | Interview | ||
---|---|---|---|---|---|---|---|---|---|---|---|
Emma | 39 | married | 0 | 1 | 19 | Paraplegia | incomplete | Apprenticeship/Training | 15 | yes | FG 1 |
Anna | 41 | married | 0 | 1 | 22 | Paraplegia | complete | Apprenticeship/Training | 12 | yes | FG 1 |
Lea | 32 | partnership | 0 | 0 | pregnant | Tetraplegia | incomplete | Undergrad or college degree | 14 | yes | FG 1 |
Emily | 50 | married | 1 | 1 | 7 | Paraplegia | complete | Post graduate | 23 | yes | FG 2 |
Lilly | 49 | married | 0 | 2 | 14 | Paraplegia | incomplete | Undergrad or college degree | 19 | yes | FG 2 |
Sara | 44 | married | 0 | 2 | 3 | Paraplegia | complete | Apprenticeship/Training | 12 | yes | FG 2 |
Marie | 45 | married | 0 | 2 | 7 | Tetraplegia | complete | Undergrad or college degree | 17 | yes | FG 2 |
Amelie | 34 | married | 0 | 1 | 11 | Paraplegia | incomplete | Apprenticeship/Training | 12 | no | FG 3 |
Lina | 38 | married | 0 | 2 | 17 | Paraplegia | complete | Post graduate | 18 | yes | FG 3 |
Maya | 45 | divorced | 0 | 1 | 5 | Paraplegia | complete | High school | 8 | yes | FG 3 |
Claudia | 47 | married | 0 | 2 | 15 | Paraplegia | complete | Apprenticeship/Training | 12 | no | EI 5 |
Rachel | 43 | partnership | 1 | 1 | 2 | Paraplegia | incomplete | Undergrad or college level | 17 | yes | EI 4 |
Laura | 32 | single | 0 | 1 | 2 | Paraplegia | incomplete | Undergrad or college degree | 15 | no | EI 1 |
Margrit | 45 | married | 0 | 2 | 13 | Tetraplegia | incomplete | Apprenticeship/Training | 13 | yes | FG 4 |
Jeannine | 30 | married | 0 | 2 | 24 | Paraplegia | complete | Undergrad or college degree | 21 | yes | FG 4 |
Monika | 48 | partnership | 0 | 1 | 19 | Paraplegia | incomplete | Undergrad or college degree | 19 | yes | EI 2 |
Kathrin | 44 | single | 0 | 1 | 15 | Tetraplegia | incomplete | Apprenticeship/Training | 17 | yes | EI 3 |
Perceived service needs during pregnancy
Perceived need for information about SCI and pregnancy
Besides medical questions, I had a lot of practical questions, like ‘Do I feel the child at all?’ —LauraDuring my first appointment with the gynaecologist, I asked him if he had other patients like me before and if he knew the process. He told me: ‘No not at all.’ He said he could find out, but that he thought there was no problem. Then I said, ‘Yeah, but how am I going to give birth? And what will happen?’ I had a thousand questions besides all the standard questions of a standard pregnancy. Then he told me: ‘Well, we will see. I think you’re not a high-risk pregnancy. ‘He said:’ We’ll frame it as a normal pregnancy, and if you need monthly controls, we will do that, no problem.’ So, that was strange. —Jeannine
Perceived need for specific health professionals’ expertise
… I prefer a good gynaecologist who reads a little in the SCI literature. —AnnaWhat profit is paraplegiological knowledge if the doctor has no idea about neonatology? —AmelieThat was principally the most difficult question: Where are the knowledgeable people? Where are the top people? Only through asking friends I came to learn of this gynaecologist in the area. —Laura
My doctor said he would be confident in treating me. I was glad I did not had to change providers because we knew each other already and I trusted him. —Anna
It bothered me to go. I did not want to go… I was not interested in these types of courses. —MargritMy doctor told me that it was useless for me because I would not give birth in a natural way. —Jeannine
Perceived need for medical treatment
I also had problems with the bowel, but the bladder was probably worse, I think. I noticed the difference with the bladder and the bowel was more constipated. — RachelI used self-medication, but always consulted my doctor [general practitioner] first, since I knew immediately when I had one [bladder infection]. —Margrit
Perceived need for access to and availability of services
…I’m always afraid when I have to look for a provider… there is no elevator, no parking and heavy doors. —Emma…we looked for a gynaecologist who had a wheelchair-accessible practice, which is in many places not the case. —IsabelI completely gave up looking for a knowledgeable provider. I had maybe not that much pressure because I had the feeling that I could do it by my own. Then I also did not insist too long searching for this one [gynaecologist with expertise in SCI]. There was definitely nobody who somehow had an idea about the topic or to provide information. I would not swear, but I could not remember having talked with anyone. —Lilly
Perceived need for specific supplies and equipment
It would certainly have been good to have a place where the whole infrastructure was available: an examination chair, enough space and rooms to fit our needs. —LauraA lot of important equipment and tools were missing in the clinic. My husband had to bring almost our whole household to my room. — Marie
Due to my specific needs.... I found it embarrassing to explain to my room neighbour how my intimate care works. — Lina
Perceived need for improved integration of care
I would have appreciated a gynaecologist who had more experience with patients with SCI, who knew more about the bladder, all the hormones and bowel management. I sometimes ran desperately from one place to another… looking for a place where I could ask my questions and receiving answers… but not being able to consult the neurologists and the urologists and so on. But maybe that’s our destiny… that we will always have to see different providers. —Laura
They [hospital staff] did not talk to each other. In the hospital of my home city, they filled in my medical chart with whatever they wanted. Every time, I had to re-explain my story and all my problems related to my pregnancy. —Jeannine
Which health services were used?
Visited health professionals
As I realized that I was pregnant, immediately I wanted to visit my gynaecologist. He said I should come only after 5 weeks, because before then we would not see anything anyway. —Amelie
I can move [incomplete paralysis], so it was only psychological for me to go through that experience [epidural anaesthesia] again of losing the feelings, the sensation and movement, and not knowing if it would come back again. … Every week I saw a psychologist and talked about how I felt. I did some relaxation and breathing exercises and just… it was just a session for me to say these are my worries, this is how I feel, and he had good advice for me; this really helped. —Rachel
It was important to me to have a person outside of us who knew my specific needs, too. I hired a woman as coach to support us. My husband told her things like, ‘my wife cannot lay on a hard surface’ and things like that. She was present during my birth. That gave me confidence. —Lilly
…what does it actually mean being pregnant and to give birth? What is possible? Those were my relevant questions. So the greatest help was certainly Monica [experienced mother], with her own experiences and her knowledge about where to get information. —Laura
Consulted facilities
I’m so excited about the bundled knowledge in this SCI centre. I think that’s such a good way to care for this population, as it takes place there. But the pregnancy area has been excluded, and that was very disappointing for me. —LillyI researched a little bit on the Internet. But even there, there is very, very poor information, almost nothing. —Lina
She [gynaecologist] comes to the SCI centre [X] every month or couple of months to see women who would like to have children and to discuss any problems or any issues. I wanted to see her first, because I had some questions about what it meant —would it be a problem to have a child after the SCI —and to get some advice. —Rachel
I would like to mention that I was completely satisfied with my gynaecologist. But the fact that I had been in the hospital afterwards, and the assistant doctors were visiting me there… […] I remember a few scenes where they over-examined me. As my breasts were under the computer tomographer, I almost dismissed myself from the hospital. I started to argue with the doctor, because I felt this was leading nowhere. —Lina
…more important for me was that, if then something would have happened, they could take the baby and go only down the street and not drive through half of the city to bring the baby to the hospital with neonatology. —Anna
I just wanted to have a look at this option (birthing centre) and they said that if the child remained hung with his shoulders during birth, I would have to immediately get out of the bathtub and transfer quickly to the birthing chair. If people like me needed help getting out of the bathtub —because I could not do it alone —that would be complicated. Also, they said you do not know how far the birth process is. If the head is already coming out, then I could not sit on the wheelchair and they would have to carry me over. That would be a risk. —Lea
I’m in a remission course for women after child loss. The exchange is different for women in difficult situations. —LauraThe pelvic floor exercises that were shown in the first course, I certainly could not do them (laughs). Yeah, I didn’t see the purpose of continuing the birth preparation course once it was clear that I would have a caesarean section. I did not need more breathing exercises (laughs). —Claudia
Perceived degree of health services utilisation
I saw my gynaecologist every 2 weeks and I had an ultrasound, which is not the case for all women. Given my situation, he acted very paternalistic. —MonicaIn the beginning, I had a 6-week interval, and now I’m beginning the 7th month and we see each other every fifth week for controls. This is certainly something that is probably different for other women, unless they have a risky pregnancy. —Lea
I think that I had fewer consultations than my other girlfriends who had been with another doctor. Today’s consultations are handled different. My doctor was experienced. — Lina
After being declared as a’risk pregnancy’ — I do not know what this word means — but risk means different. So I was treated differently. I think that’s why I stayed 10 days in the hospital. In general, it is rare that somebody has to stay 10 days there. —Kathrin