Appendix 6 Audit trail - example of first and second round coding of data

Physical Disability

'The cerebral palsy ... to be honest I'm ok with it, I mean it has never really hindered anything I've done or, you know I've always you know managed, if I couldn't do something a certain way, I would figure out my own way of doing it'. (PD7)

'Basically if affects the balance on the left side, everything on the left side is weaker, than what it would be on the right, it is more so the co-ordination than anything else'. (PD7)

Theme 5. Disability

Sub theme -

Acceptance and adaptability

'As the pregnancy went on and I got bigger yeah it was a problem because the legs became very restricted in movement, as regards lifting and things like that and I often, which was quite frightening, I would often lose the power in my legs because she would sit on a nerve in the back so the legs would just go without a warning ... gone for maybe an hour, maybe 2, it could be half an hour, it could be 10 minutes it depends on herself (baby) and when she decided to move'. 'I became quite restricted in my own movements and things that I could do, well that I was able to do, that I couldn't do'.

Sub theme -

Impact of pregnancy on disability

'I actually didn't find out I was pregnant until I was quite far along, I was 16, nearly 17 weeks before I found out I was pregnant, the reason for that being was I was always quite irregular in the menstrual cycle'. (PD7)

'My local GP was actually treating me for gastro-enteritis and didn't think to ask you know was I pregnant or you know look for a urine sample or anything like that. It was only myself, it kind of registered with me, I thought to myself well gastro-enteritis can't last for 3 weeks, 3 or 4 weeks, so it was just by accident I kind of went in and said to myself well I'll take the pregnancy test and I'll see what happens and it came out positive then'. (PD7)

Theme 1. Access to services

Sub theme -

Barriers to diagnosis of pregnancy

'I actually had a row with him (GP) over the phone, saying listen you have to come up, I wouldn't ask unless I really needed it. But previously I had 2 doctors out on call ...because I was really, really bad and I was getting sick and everything and I was hallucinating and everything else, I was really, really bad and they had given me injections and things and both of them had said oh its gastro enteritis it will be gone inside of a, well the vomiting will stop after the injection and that was it really'. (PD7)

Sub theme -

Barriers to diagnosis of pregnancy

'Transport was a difficult thing, getting taxis to go into town early in the morning is very difficult, not a lot of them will go in because a) they will get caught in traffic and b) they won't get a run to bring them out again. So not a lot of them will go in'. 'Buses ... were quite difficult, with schedules and things, I often missed appointments, early appointments due to traffic and different things like that'. (PD7)

'Yeah transport was the main problem, appointments were always made very earlier and it was difficult to kind of arrange some other time and when I didn't, I was kind of confronted with phone calls saying well you know why haven't you turned up and you know what is going on here and you've missed this appointment again, you know we can't keep re-scheduling, that was the kind of attitude now no matter how many times you try and tell them look it is difficult to get in, you kind of met with a blank wall'. (PD7)

Sub theme -

Structural environment - transport

'The clinics are not in any way shape or form set up. You have a kind of production line'. 'You can certainly get in the door but it's not very easy, these things certainly haven't been thought of really well'. (PD8)

Sub theme -

Structural environment - antenatal appointments

'There was ramps, ramps for people to come in with their buggies and that so that was fine. The accessible toilet wasn't great, it was really more it was big to allow a mother to bring a pram in rather than being a properly adapted toilet but with my husband with me I could use it but I wouldn't have been able to use it without him'. 'Not all the entrance doors are ... automated, so that's difficult which is definitely not the way it should be and you've got a heavy door, so you're trying to balance yourself and try and get the door open, so that's bad but if you come in the main entrance its automated'. (PD5)

Sub theme -

Structural environment - antenatal clinic

'... Parking in the (maternity unit) is a nightmare and there is a designated space but it's not policed and inevitably people park where they shouldn't'. (PD5)

Sub theme -

Structural environment - antenatal clinic

'One of the biggest problems I had all the way through the pregnancy and when I was in the hospital was having to climb up (on examination table/bed), I mean it's difficult enough when you are not pregnant to get from a wheelchair into something like that but, it's very often impossible. But certainly add the baby weight onto it, it's basically nuts. But yet I would have to get up and down off these things because they didn't have adjustable beds'. (PD8)

Sub theme -

Structural environment - antenatal clinic

'The examination couch was not height adjustable, just an old wooden couch'. (PD5)

Sub theme -

Structural environment - antenatal clinic equipment

'Late at night I actually had to go in to have an emergency scan (woman had a bleed), but me not thinking and this being my first pregnancy, I went to the first hospital that was nearest, I went into(general hospital) and a nurse there actually, for want of a better word gave out to me, you know saying well this isn't a maternity hospital and you should have went to (maternity unit), to which my partner retaliated well excuse me I'm not going to bypass one hospital to get to another one'. (PD7)

Sub theme -

Structure of publicly funded health service

'Basically getting it from the internet or, I asked, my mum has a friend and she has CP and she had a baby, she had 4 kids now, so I kind of sat with her and asked her a few things'. (PD7)

Theme 2. Appropriateness of services

Sub theme -

Sourcing information

'I was saying to him (doctor in maternity unit) ... can you explain that to me please, what are you talking about, I'll discuss it with you in a minute was the kind of and very sharp you know, kind of no I'm doing something and me you know worrying there is something seriously wrong (with baby), but the attitude I was confronted with was well I'm doing something, I'll get around to you when I'm ready to get around to you'. 'He was the only negative one I came across, that was fairly, you know my opinion is my opinion and I don't have to discuss it with you, if I don't want to, you know that kind of way'. (PD7)

Theme 3. Responsiveness of services

Sub theme -

Interactions with health professionals

'He (GP) seemed kind of arrogant ...I had asked him to come up to the house because I couldn't move, I was really, really sick and he seemed to be well you know my dinner is on the table and that kind of attitude and I have to go home, I have had a surgery of patients all day'. (PD7)

Sub theme -

Interactions with health professionals - Reciprocity

'I have to say ... the midwives were very good and they were very helpful. Yeah, they were quite helpful, I mean any questions I had as in regards to what was going to happen or pain wise or anything like that, they were always very open and very upfront, you know and very co-operative and very helpful, so there was no problem there with them, there was just the one, but you always get the kind of the one that will make things difficult for you'. (PD7)

Sub theme -

Interactions with health professionals

'Basically (H.P. name) said to us I help loads of disabled women to get pregnant but they've all had accidents which made them disabled, none of them had genetic impairments, so basically he was saying that if there was any risk, we couldn't guarantee that we wouldn't have a disabled child, he didn't want to know, that was pretty much it. Thankfully I'm a very stubborn person and I refused to let their prejudice impact on my life and also thankfully I have met some amazing people over the years'. (PD5)

Sub theme -

Interactions with health professionals - Prejudice

'He (doctor in maternity unit) didn't really tell me anything ... he was kind of another one rushing me up for scans this, that and the other'. (PD7)

Sub theme -

Exchange of information - Disempowering

'Any information I got, I got myself. There was a leaflet given to me, just a leaflet on you know things you eat and things you don't ... any information I got, I got myself.' (PD8)

Sub theme -

Exchange of information

'When you have CP and you're not, your mindset is on one thing and they (H.Ps) are contradicting you going on about something else, it is frightening. You are trying to grab these people and say well look and ask these kind of questions, well what is going to happen or you know what is going to be done or what are you doing to me or you know that kind of way. And it is quite frightening, especially when you can't get the time with them to say well listen this is the way I want things to go or this is more comfortable for me and when you are being met with a blank wall, as in regards to that it is scary, it is quite scary'. 'Rushed, you know questions were answered quite quickly and even then they weren't, I felt like I wasn't being listened to half the time. It's confusing and it is scary all at the same time'. (PD7)

'In the hospital I wasn't believed, I wasn't listened to.' (PD8)

Sub theme -

Exchange of information - Disempowering

'They (H.Ps) talked over me an awful lot of the time and even, no matter how many times you said hello you know I'm here, yeah I'm in the room, you know talking over me, it was still kind of very well, you know this has to be done with her and that has to be done with her, so it wasn't, it was very closed off'. (PD7)

Sub theme -

Exchange of information - Disempowering

'They (doctors maternity unit) kept saying to me, well we've had people that can't feel from below the waist and she kept referring to this not feeling from below the waist and no matter how many times I tried to tell her, she still referred back to, oh we have had many people that can't feel from the waist down. It was kind of like, yeah well you are telling us this but we are going to try this. They didn't seem to know ... much about my condition, if anything. It was kind of like they (H.P.s) were generalising'. (PD7)

Sub theme -

Communication with health professionals

'I had to tell them (about the disability). I think in a way it's better because if they already have ideas they might have preconceptions that are not correct, so I think it was in a way better because it meant that I was the expert'. (PD5)

Sub theme -

Lack of health professional's knowledge re disability and needs

'The physiotherapist had said, I was asking her questions, how will it affect the legs and the back and this that and the other and her answer to me was kind of like well I know as much about it as you do. I didn't get to see her much, I didn't get, I only got to see her twice I think throughout the whole pregnancy'. (PD7)

Sub-theme -

Lack of health professional's knowledge re disability and needs

'I kind of, I felt like surely to God I can't be the only woman with CP to have a baby, I'm not I know that, but that is the way it kind of felt. H.P. still generalise, they still don't seem to know an awful lot about it, which is frightening in a sense, because even though you are trying to explain things to them, they still generalise and they still you know, they weren't prepared to, well they were listening but it wasn't, it was kind of going in one ear and out the other'. (PD7)

Sub theme -

Lack of health professional's knowledge re disability and needs

'My partner would have been there most of the time, so he would have been the main source of help there'. (PD5)

Sub theme -

Assistance and support

'I was only referred to an ante-natal class towards the end, I mean in the last 2 weeks of the pregnancy which is absolute lunacy. I had enquired about it myself beforehand and basically what I was told was, there is a number on the wall. When I rang I was told we have no classes coming up between now and then so you know, there is nothing really can be done there. So no preparation, nothing as regards labour or anything like that, nothing, I mean all I got was ... the answers to the questions that I asked, like well how will, you know will I be able to do this or will I be, well I was sort of asking will it be painful or you know how will it affect my legs and they didn't seem to, anything I learned throughout the pregnancy I had to go and find for myself, because they didn't seem to know'. (PD7)

Sub theme -

Planning and preparation

'They (antenatal classes) wouldn't be accessible to me because I wouldn't be able to get on mats so I wasn't offered any antenatal classes. I would have liked to have done them if I had the opportunity'. (PD5)

Sub theme -

Planning and preparation

'There was nothing like that (assessment of needs), I found most of the time I was chasing doctors and nurses to ask my own questions,which was awkward'. (PD7)

Sub theme -

Planning and preparation

'He (anaesthetist) looked at my back and went you are not having an epidural and I said why, he said because we don't know where to stick the needle and nobody has done any planning and nobody has done this or that, and we'd have to talk to your neurologist and if you want an epidural it ain't happening today'. (PD8)

Sub theme -

Planning and preparation

'Degrading, it was very degrading, I had to come back here (home) and ask my mum to help me into the bath and so that could be very degrading and I mean and it was, it was quite upsetting for me, because I don't like having to depend on people, I never did depend on people, so it was kind of a new thing for me and I didn't like it to be honest with you, even though I knew it had to be done. I didn't, it wasn't, it often upset me'. (PD7)

Theme 4. Impact of experience on woman

Sub theme -

Dependence

'I was just a pregnant woman, just a pregnant woman basically'. (PD5)

Sub theme -

Sense of normality

Hearing Impaired

'I got a letter that said, you need an appointment for a fetal assessment in gynae ward and I said what's that, what's gynae, I never heard that word before, I hadn't heard that word before and you have to agree and I thought, oh dear, I don't know what I'm agreeing to here so I got someone to ring for me and you know, which means again, your privacy is completely compromised, you have to get someone else to ring for you and I said what's this about, you know, and it was to do with my history ... so I wanted them to provide an interpreter and there was a big problem, I said if there's no interpreter available I'm going to bring an interpreter next time and they said, well you've got to pay for the interpreter because we can't cover that'. (HI1)

Theme 1. Access to services

Sub theme -

Confidentiality and privacy

'I had this whole argument, on the phone, I was very upset about it because the manager, of the clinic, the clinic manager was explaining the situation and I said what is the problem now, ... I'm not asking for anything out of the ordinary, ... I want the interpreter ... certified, accredited to do medical work, so then I waited for a long time, and had to go all the way up to the top and eventually they agreed to cover my interpreter, to pay for basically the interpreter that I wanted and who was qualified. But I fought very, very hard'. (HI1)

Sub theme -

Confidentiality and privacy

Choice

'I realised afterwards when I did bring her (SLI) it was fantastic because there was so much information I never knew, you know, without an interpreter there to, to give you access to everything that they're saying and felt like oh my God and then once I realised all the information that was there, I was able to quiz them, ask them loads of questions ... it was great, really good to have the interpreter there. I was so satisfied ... I was able to have a proper dignified conversation and question and answer session. Whereas before, you know, I was just relying on trying to read their facial expressions and ... also I was able to ask the interpreter things like, what's their voice like, has she got a soft voice or does she, does she sound strict and harsh and the interpreter was able to explain this to me'. (HI1)

Sub theme -

Access to information

'When we're sitting in a waiting room, we have our eyes, you know, on the person coming around and we lip read our own name'. I would remind the person at the reception, desk, my name, because they often forget anyway and they'll call your name, but now when I go in they'll recognise me, now so I'm much more comfortable waiting, but I would never read a magazine, deaf people can never read a magazine in a waiting room like hearing people'. (HI1)

Sub theme -

Structural environment - antenatal clinic

'... the woman would do a scan and then theywWould all talk to each other and I wouldn't know what they were saying'. (HI1)

Theme 2. Appropriateness of services

Sub theme -

Interventions - scan

'... didn't have any communication, we were writing notes back and forward but I felt quite shy, my family didn't know about it, it was very hard for me and then I lost the baby, which was worse because I had no access at all to any information for support and the nurse was saying, you'll be fine, you'll be grand, you'll have other babies later on in your life and you'll be alright. That wasn't the point for me, you know, at that time it was about accepting, I just accepted that I was pregnant and then when I lost the baby, my mood just, it hit the floor'. (HI1)

Theme 3. Responsiveness of services

Sub theme -

Communication with health professionals

'... but for 9 months of the pregnancy I didn't have any interpreter, it was just writing notes back and forth. I mean the doctor did try to tell me what was going on, but, you don't have an interpreter when you're with your GP'. (HI1)

'I went in to (maternity unit) and there was like an old fashioned computer and there was an old woman sitting there and I don't like communicating with old, old women, purely because my experience is that their attitude tends to be very old fashioned and not, you know, something of the past which is very paternalistic so anyway, I sat down, it was my first visit, and she explained to me, she said what's your name, so I wrote down my name. And she wasn't writing anything down and I said, can you write it down and she said no, no, you can lip read me, come on, you can lip read, which immediately then I felt a bit stressed because I hate lip reading, it's a very difficult thing to do and then she started using these words that I didn't understand, or I didn't, I couldn't read from her lips, so then she turned the computer around and I had to look at the screen and it was full of medical words, a screen full of medical words and she said come on, pull your chair around, she said, you know, and have a look at this. I didn't understand what it was'. (HI1)

Sub theme -

Communication with health professionals

'... my hands were getting swollen and I thought is this the same as my first child, ... I had swollen hands and swollen feet and I thought, well that's okay, I remember my wedding ring that I had, and they wanted me to take it off and it was difficult to take off and, and I started to laugh, you know, I wasn't being serious and the nurse gave out to me for laughing and I didn't know what was going on. And she said we're going to have to cut your ring off and I was saying, oh my God, what's going on, what's wrong'. (HI1)

Sub theme -

Exchange of information

'... they started off talking, you know, away, between each other, and I couldn't hear what they were saying or didn't know what was going on. They were talking to themselves, they weren't communicating with me even by the written word (woman's first language is sign language), they were just, you know, I knew there was something going on but they weren't attempting to communicate with me'. (HI1)

Sub theme -

Communication with health professionals - Disempowering

'I was nervous as well and when you're nervous it's harder to write English because it's a bit nerve racking anyway because it's not your first language but then under pressure it's worse so then trying to write questions'. I was embarrassed, my confidence fell, ... I felt like they saw me as someone who is very stupid, I'm a confident woman generally but it was so quickly my confidence was totally diminished and I, I felt humiliated ... I was starting to panic a little bit ... I felt terrible actually, it did impact me a lot'. (HI1)

Sub theme -

Communication with health professionals

Exchange of information

'I would always love to have the same nurse, I think a lot of deaf people feel like that because it's easier and it was always a different person, it makes it very difficult and of course in a hospital it's always somebody different they change all the time and also quite often they'd be non Irish medical staff and it's just very difficult to lip read people, you know, with strong accents or unfamiliar looking kind of faces, lip reading is very, very difficult, very arduous in the first place, so it makes it that much harder'. (HI1)

Sub theme -

Continuity of carer

Communication with health professionals

Exchange of information

'I didn't understand it but then I was able to go home and research it on the internet and so on and then I started to understand a little bit more about what is going on. I really needed an interpreter in order to have that basic information'. (HI1)

Sub theme -

Sourcing information

'It was my friends that were really supportive'. (HI1)

Sub theme -

Assistance and support

'I went to see my GP and he asked did I want an interpreter and I said oh yes, I need an interpreter, it's necessary. So he sent a letter out to (maternity unit). I got a letter from (maternity unit) and it said you've requested an interpreter, but, we have a staff nurse here who's able to sign, and then the second one said, the bill for interpreter would be a lot and ... it's too much, you wouldn't be able to have an interpreter and that we have a nurse'. (HI1)

Sub theme -

Planning and preparation

'... so I said okay, well who is the interpreter then, because I prefer to get my own interpreter because it's quite a personalised thing and I wanted the same interpreter I had before and the deaf community is very small, ... so anyway, they said the staff nurse was very good and is able to sign and this kind of thing and can interpret, so I thought oh okay. So the first visit, I'll be able to check her out and see. She never turned up. She wasn't there. And that worried me'. (HI1)

Sub theme -

Planning and preparation

'... there was an antenatal clinic with a group ... and I said I want to know what they're saying because you know, for my first child, I want to know what's going on and so on and I remember them saying you'll be better off with a one to one class, to get information. So I did that and I got the interpreter and so on, and we sat down and watched a video and I remember thinking, oh you're showing me a video, I want human contact, you know, I don't want to just be shown a video, so anyway we watched it and then that was finished, so I wasn't at all satisfied with that, I thought no, that doesn't work, you know'. (HI1)

Sub- theme -

Planning and preparation

Vision Impaired

'... I asked my husband to buy a pregnancy test. I couldn't do a pregnancy test on my own ... I had to ask my husband to read it for me'. (VI8)

Theme 1. Access to services

Sub theme -

Barriers to diagnosis of pregnancy

'It (maternity unit) was easy enough to get to and it was easy to get to from work. So I just got a taxi and I could find my way there myself and that was really useful and really important for me'. (VI8)

Sub theme -

Structural environment - transport

'... big room that's good but for a blind person that's really hard, it's like take a seat, where, all I can hear is this big massive room and I have no idea where the seats were'. (VI8)

Sub theme -

Structural environment - antenatal clinic

'... my husband was with me ... the obstetrician actually had become really quite aware so that was the only time and he actually guided me to the seat which was great'. (VI8)

Sub theme -

Structural environment - navigating the clinic

'We went to my GP and my GP said have you thought about delivery and I said how about a homebirth and she didn't think it was safe. And I was quite disappointed and then I said I would prefer to have a kind of a midwife led service rather than a medical kind of service, or rather than a doctor, an obstetrician type service ... then said we fell out of the catchment area for a midwife service, led service so that wasn't an option'. (VI8)

Sub theme -

Choice

'I liked the home birth idea, the reason why I wanted a home birth was because I didn't want to go to a big hospital because people come in and out, especially it was a big ward, could have been the Nightingale ward for all I knew, people coming in and out, you can't actually relax because you haven't, don't know who anyone is, you feel very, very vulnerable as a blind person, it could be anyone coming in and you can't see if someone is wearing a uniform or not or see their ID cards or anything like that, they could be taking my baby or they could be doing whatever and that's a very, very, it's a very stressful, very, very stressful environment for a blind person because you, may not be able to easily find the toilet, they won't let a guide dog in to the hospital and some places refuse to let you use white canes and I can kind of understand that in some ways, if your sticking out a white cane you could trip somebody over even though they might be sensible precautions they're very, very disabling so I may not be able to take myself to the toilet or go and have a walk and get fresh air which I would probably like to do normally. So the reasons why I wanted a home birth were very, very much because I'm blind, as well as who I am and my own personality'. (VI8)

Sub theme -

Choice

'... my GP said that if I went down the route of getting an independent midwife she would have nothing more to do with it, she would, because her concern was that if something went wrong the independent midwives don't have the back up of the hospital. ... we got 2 independent midwives to come to the house and my husband really, really didn't like those, they were very much anti establishment and he kind of felt that they were saying why they wouldn't work in hospitals and why they didn't want to have anything to do with hospitals rather than why homebirth was so good'. (VI8)

Sub theme -

Choice

'At the initial meeting she (GP) handed me a booklet and they were obviously in an inaccessible format so I had to get my husband to read them for me'. (VI8)

Theme 2. Appropriateness of services

Sub theme -

Exchange of information

'There was nothing in any other format. The only thing I ever got in any other format was caring for your baby from birth to 6 months, or birth to 6 weeks and it was from the public health nurse after the baby was born and it had a CD in the back of it but the CD was like oh refer to the diagram in the book, it wasn't designed for blind people, it was designed for ease of access for other people. It's frustrating and it undermines you and it highlights the difficulties, that your different and you know I'm very lucky that I have that kind of a relationship with my husband and that my husband is sighted'. (VI8)

Sub theme -

Exchange of information

'... didn't have access to books or anything like that that other people had, I kind of just looked up the internet'. (VI8)

Sub theme -

Sourcing information

'... an Australian website, it's midwifery website by, it's like an on line antenatal class and it was very, very good, I found that really, really helpful because it gave me the information that I wanted and it went through all sorts of things like abnormalities and stuff ... it's good to have access to the information'. (VI8)

Sub theme -

Sourcing information

'... the scan showed that everything was fine and everything was normal but I kind of felt that I was kind of shoehorned into the service and I don't think it was necessarily the most appropriate service. I think that I would probably have got on a lot better with a midwife and I think that a midwife, this might be my assumptions but I think the midwife would probably have more of a holistic approach, would probably have more of a human approach to an obstetrician and the midwife is experienced or an expert in normal pregnancy whereas an obstetrician is kind of more expert in problems and I didn't want to go down the problem route'. (VI8)

Sub theme -

Interventions

'scans ... I couldn't see any of those. I had to ask to hear the heart beat ... that was very, very exciting, it was a big strong heart beat'.(VI8)

Sub theme -

Interventions

'When we went for ... the big scan, yeah that was good, she (midwife) was very good actually, she really explained what was on the screen'. (VI8)

'... my GP would be aware that it's important for her to say where she is and tell me where to sit exactly and those kind of things because in a none familiar environment I wouldn't be aware. And for me building a rapport with somebody is really important for me you need to know what they're going to do before they do it. So if there's suddenly this hand or this wet thing or this cold thing or whatever on you, it's very disconcerting'. (VI8)

Theme 3. Responsiveness of services

Sub theme -

Interaction with health professionals

'I didn't want to go through the whole big medical, medical thing and so I had made an appointment with an obstetrician and she obviously had the referral letter, God only knows what the GP put in the referral letter because the obstetrician then refused to see me. I asked her why and she said oh she doesn't think it would work out, actually don't think it will work out with her and I couldn't understand why that was happening, it didn't make sense to me and I was a bit upset about it'. (VI8)

Sub theme -

Interaction with health professionals

Lack of health professionals knowledge about disability

'I found him (obstetrician) excellent. Going to see the same person all the time is really, really important, they can get to know me because my experience is that people tend to be a little bit, not patronizing, if they don't know, don't have an experience of blind people, they might not feel comfortable, they might not know, they might trip over their words or they might, just not feel comfortable and just not treat me in a normal way. And that's been my experience of doctors in particular. And so it was really sensible to go have the same person all the time'. (VI8)

Sub theme -

Interaction with health professionals - continuity of carer

'... practically all of them asked me about my sight ... how much can you see and all that kind of stuff, ... and then they asked me about the condition. Then it was like well the child, will that have the same sight and we said it's a 50/50 chance and one person asked me would I like to be tested, another person asked me would I consider pre implantation screening. Pre implantation screening,warning bells going off in my head, is that legal'. (VI8)

Sub theme -

Disability took precedence - emphasis on screening

' I got really, really upset and really insulted by that, it suggests that being blind is something so horrific and so horrible that you'd be willing to abort a child which was one of the things that we sort of, screening and potentially aborting or pre implantation screening, that I would put myself through so much to avoid passing on one of my characteristics. I felt really, really upsetting. Its abnormal in my family to be able to see'. (VI8)

Sub theme -

Disability took precedence - emphasis on screening

'Screening ... the suggestion that you would do anything to avoid passing on these genes and its passing on part of me which is such a disrespect to a part of me that I'm not, proud of is a different, a feeling of being proud of it, it's who I am, it's what I am and I don't want to be different, I don't want to be cured, I don't want to be changed, I'm happy with the way I am and I think I'm ok the way I am. And I think that it would be ok for a child to inherit parts of me, like it would be ok for them to inherit parts of their father or whatever'. (VI8)

'I'll keep my fingers crossed that your child doesn't have inherited the condition, which is fine and of course you hope that the child doesn't have the condition in some ways but again there was that slight kind of inference that it's not normal'. (VI8)

'... my GP asked me how I was going to feed the baby and I said well breast feed and she said do you think you'll be able to manage that because you know it's quite a difficult thing to do and I thought that was a really strange thing to ask. I was kind of thinking why would it be any more difficult for me to breast feed than anybody else, surely it's a kind of a touch thing, you can feel it and ... actually I felt that it would be much more difficult to make the bottle formula than it would be to breast feed because I wouldn't be able to know water, be able to measure the spoon of formula'. (VI8)

Sub theme -

Interaction with health professionals - Attitudes

'It's just subtle attitudes from people like you hear people saying this pregnant woman with a guide dog, there's almost kind of horror and it kind of makes you feel kind of grotesque and not quite human because they're just thick you know and when I was pregnant it was very much like how, you know that's dreadful, that was kind of the impression'. (VI8)

Sub theme -

Interaction with health professionals - Attitudes

'So we booked a 1 day thing with (name) ... a one to one session ... that worked out quite well'. (VI8)

Sub theme -

Planning and preparation

Physical Disability

'My local GP was actually treating me for gastro-enteritis and didn't think to ask you know was I pregnant or you know look for a urine sample or anything like that. It was only myself, it kind of registered with me, I thought to myself well gastro-enteritis can't last for 3 weeks, 3 or 4 weeks, so it was just by accident I kind of went in and said to myself well I'll take the pregnancy test and I'll see what happens and it came out positive then'. (P7)

Theme 2 [T2] Accessibility

T2 Barriers to diagnosing pregnancy

'Transport was a difficult thing, getting taxis to go into town early in the morning is very difficult, not a lot of them will go in because a) they will get caught in traffic and b) they won't get a run to bring them out again. So not a lot of them will go in'. 'Buses ... were quite difficult, with schedules and things, I often missed appointments, early appointments due to traffic and different things like that'. (P7)

T2 Structural environment- transport

'Yeah transport was the main problem, appointments were always made very earlier and it was difficult to kind of arrange some other time and when I didn't, I was kind of confronted with phone calls saying well you know why haven't you turned up and you know what is going on here and you've missed this appointment again, you know we can't keep re-scheduling, that was the kind of attitude now no matter how many times you try and tell them look it is difficult to get in, you kind of met with a blank wall'. (P7)

T2 Difficulty making appointment

'Late at night I actually had to go in to have an emergency scan (woman had a bleed), but me not thinking and this being my first pregnancy, I went to the first hospital that was nearest, I went into(general hospital) and a nurse there actually, for want of a better word gave out to me, you know saying well this isn't a maternity hospital and you should have went to (maternity unit)'. (P7)

Theme 1 [T1] Availability

T1 Structure of publicly-funded health services

'Basically getting it from the internet or, I asked, my mum has a friend and she has CP and she had a baby, she had 4 kids now, so I kind of sat with her and asked her a few things'. (PD7)

Theme 3 [T3] Accommodation

T3 Scouring information

'I was saying to him (doctor in maternity unit) ... can you explain that to me please, what are you talking about, I'll discuss it with you in a minute was the kind of and very sharp you know, kind of no I'm doing something and me you know worrying there is something seriously wrong (with baby), but the attitude I was confronted with was well I'm doing something, I'll get around to you when I'm ready to get around to you'. 'He was the only negative one I came across, that was fairly, you know my opinion is my opinion and I don't have to discuss it with you, if I don't want to, you know that kind of way'. (P7)

Theme 5 [T5] Acceptability

T5 Interpersonal and interactions with health professionals - attitudes

'He (GP) seemed kind of arrogant ... I had asked him to come up to the house because I couldn't move, I was really, really sick and he seemed to be well you know my dinner is on the table and that kind of attitude and I have to go home, I have had a surgery of patients all day'. (P7)

T5 Interpersonal and interactions with health professionals - attitudes

'I have to say ... the midwives were very good and they were very helpful. Yeah, they were quite helpful, I mean any questions I had as in regards to what was going to happen or pain wise or anything like that, they were always very open and very upfront, you know and very co-operative and very helpful, so there was no problem there with them, there was just the one, but you always get the kind of the one that will make things difficult for you'. (P7)

T5 Interpersonal and interactions with health professionals - support and assistance

'Basically(H.P. name) said to us I help loads of disabled women to get pregnant but they've all had accidents which made them disabled, none of them had genetic impairments, so basically he was saying that if there was any risk, we couldn't guarantee that we wouldn't have a disabled child, he didn't want to know, that was pretty much it. Thankfully I'm a very stubborn person and I refused to let their prejudice impact on my life and also thankfully I have met some amazing people over the years'. (P5)

T5 Interpersonal and interactions with health professionals - attitudes

'He (doctor in maternity unit) didn't really tell me anything ... he was kind of another one rushing me up for scans this, that and the other'. (P7)

T3 Exchange of information

'You are trying to grab these people and say well look and ask these kind of questions, well what is going to happen or you know what is going to be done or what are you doing to me or you know that kind of way. And it is quite frightening, especially when you can't get the time with them to say well listen this is the way I want things to go or this is more comfortable for me and when you are being met with a blank wall, as in regards to that it is scary, it is quite scary'. (PD7)

T3 Exchange of information

'In the hospital I wasn't believed, I wasn't listened to'. (P8)

T5 Interpersonal relationships and interactions with health professionals

'They (H.Ps) talked over me an awful lot of the time and even, no matter how many times you said hello you know I'm here, yeah I'm in the room, you know talking over me, it was still kind of very well, you know this has to be done with her and that has to be done with her, so it wasn't, it was very closed off'. (P7)

T5 Interpersonal relationships and interactions with health professionals

'They (doctors maternity unit) kept saying to me, well we've had people that can't feel from below the waist and she kept referring to this not feeling from below the waist and no matter how many times I tried to tell her, she still referred back to, oh we have had many people that can't feel from the waist down. It was kind of like, yeah well you are telling us this but we are going to try this. They didn't seem to know ... much about my condition, if anything. It was kind of like they (H.P.s) were generalising'. (P7)

T5 Lack of knowledge

'I had to tell them (about the disability). I think in a way it's better because if they already have ideas they might have preconceptions that are not correct, so I think it was in a way better because it meant that I was the expert'. (P5)

T5 Health professional's lack of knowledge

'The physiotherapist had said, I was asking her questions, how will it affect the legs and the back and this that and the other and her answer to me was kind of like well I know as much about it as you do'. (PD7)

T5 Health professional's lack of knowledge

'My partner would have been there most of the time, so he would have been the main source of help there'. (P5)

T5 Support and assistance

'I was only referred to an ante-natal class towards the end, I mean in the last 2 weeks of the pregnancy which is absolute lunacy. I had enquired about it myself before hand anbasically what I was told was, there is a number on the wall. When I rang I was told we have no classes coming up between now and then so you know, there is nothing really can be done there. So no preparation, nothing as regards labour or anything like that, nothing, I mean all I got was ... the answers to the questions that I asked, like well how will, you know will I be able to do this or will I be, well I was sort of asking will it be painful or you know how will it affect my legs and they didn't seem to, anything I learned throughout the pregnancy I had to go and find for myself, because they didn't seem to know'. (D7)

T3 Planning and preparation

'They (antenatal classes) wouldn't be accessible to me because I wouldn't be able to get on mats so I wasn't offered any antenatal classes. I would have liked to have done them if I had the opportunity'. (P5)

T3 Planning and preparation- antenatal classes

'There was nothing like that (assessment of needs), I found most of the time I was chasing doctors and nurses to ask my own questions, which was awkward'. (P7)

T3 Planning and preparation -assessment of needs

'He (anaesthetist) looked at my back and went you are not having an epidural and I said why, he said because we don't know where to stick the needle and nobody has done any planning and nobody has done this or that, and we'd have to talk to your neurologist and if you want an epidural it ain't happening today'. (P8)

T3 Planning and preparation

'I was just a pregnant woman, just a pregnant woman basically'. (P5)

T5 Normality

Hearing Impaired

'I got a letter that said, you need an appointment for a fetal assessment in gynae ward and I said what's that, what's gynae, I never heard that word before, I hadn't heard that word before and you have to agree and I thought, oh dear, I don't know what I'm agreeing to here so I got someone to ring for me and you know, which means again, your privacy is completely compromised, you have to get someone else to ring for you and I said what's this about, you know, and it was to do with my history ... so I wanted them to provide an interpreter and there was a big problem, I said if there's no interpreter available I'm going to bring an interpreter next time and they said, well you've got to pay for the interpreter because we can't cover that'. (H1)

T2 Confidentiality and privacy

'I had this whole argument, on the phone, I was very upset about it because the manager, of the clinic, the clinic manager was explaining the situation and I said what is the problem now, ... I'm not asking for anything out of the ordinary, ... I want the interpreter ... certified, accredited to do medical work, so then I waited for a long time, and had to go all the way up to the top and eventually they agreed to cover my interpreter, to pay for basically the interpreter that I wanted and who was qualified. But I fought very, very hard'. (H1)

T3 Communicating with health professionals

'I realised afterwards when I did bring her (SLI) it was fantastic because there was so much information I never knew, you know, without an interpreter there to, to give you access to everything that they're saying and felt like oh my God and then once I realised all the information that was there, I was able to quiz them, ask them loads of questions ... it was great, really good to have the interpreter there. I was so satisfied ... I was able to have a proper dignified conversation and question and answer session. Whereas before, you know, I was just relying on trying to read their facial expressions and ... also I was able to ask the interpreter things like, what's their voice like, has she got a soft voice or does she, does she sound strict and harsh and the interpreter was able to explain this to me'.

(HI1)

T3 Communicating with health professionals

'When we're sitting in a waiting room, we have our eyes, you know, on the person coming around and we lip read our own name'. I would remind the person at the reception, desk, my name, because they often forget anyway and they'll call your name, but now when I go in they'll recognise me, now so I'm much more comfortable waiting, but I would never read a magazine, deaf people can never read a magazine in a waiting room like hearing people'. (H1)

T3 Structural environment - antenatal clinic

'... the woman would do a scan and then they would all talk to each other and I wouldn't know what they were saying'. (H1)

T3 Communicating with health professionals

'... didn't have any communication, we were writing notes back and forward but I felt quite shy, my family didn't know about it, it was very hard for me and then I lost the baby, which was worse because I had no access at all to any information for support and the nurse was saying, you'll be fine, you'll be grand, you'll have other babies later on in your life and you'll be alright. That wasn't the point for me, you know, at that time it was about accepting, I just accepted that I was pregnant and then when I lost the baby, my mood just, it hit the floor'. (H1)

T3 Communicating with health professionals

'... but for 9 months of the pregnancy I didn't have any interpreter, it was just writing notes back and forth. I mean the doctor did try to tell me what was going on, but, you don't have an interpreter when you're with your GP'. (H1)

T3 Communicating with health professionals

'I went in to (maternity unit) and there was like an old fashioned computer and there was an old woman sitting there and I don't like communicating with old, old women, purely because my experience is that their attitude tends to be very old fashioned and not, you know, something of the past which is very paternalistic so anyway, ...and she wasn't writing anything down and I said, can you write it down and she said no, no, you can lip read me, come on, you can lip read, which immediately then I felt a bit stressed because I hate lip reading, it's a very difficult thing to do and then she started using these words that I didn't understand'. (H1)

T5 Interpersonal relationship and interactions with health professionals - attitudes

'... my hands were getting swollen and I thought is this the same as my first child, ... I had swollen hands and swollen feet and I thought, well that's okay, I remember my wedding ring that I had, and they wanted me to take it off and it was difficult to take off and, and I started to laugh, you know, I wasn't being serious and the nurse gave out to me for laughing and I didn't know what was going on. And she said we're going to have to cut your ring off and I was saying, oh my God, what's going on, what's wrong'. (H1)

T3 Exchange of information

'... they started off talking, you know, away, between each other, and I couldn't hear what they were saying or didn't know what was going on. They were talking to themselves, they weren't communicating with me even by the written word (woman's first language is sign language), they were just, you know, I knew there was something going on but they weren't attempting to communicate with me'. (H1)

T3 Communicating with health professionals

'I was nervous as well and when you're nervous it's harder to write English because it's a bit nerve racking anyway because it's not your first language but then under pressure it's worse so then trying to write questions'. I was embarrassed, my confidence fell, ... I felt like they saw me as someone who is very stupid, I'm a confident woman generally but it was so quickly my confidence was totally diminished and I, I felt humiliated ... I was starting to panic a little bit ... I felt terrible actually, it did impact me a lot'. (H1)

T3 Communicating with health professionals

'I would always love to have the same nurse, I think a lot of deaf people feel like that because it's easier and it was always a different person, it makes it very difficult'. (H1)

T3 Continuity of carer

'[N]on Irish medical staff and it's just very difficult to lip read people, you know, with strong accents or unfamiliar looking kind of faces, lip reading is very, very difficult, very arduous in the first place, so it makes it that much harder'. (H1)

T3 Communicating with health professionals

'I didn't understand it but then I was able to go home and research it on the internet and so on and then I started to understand a little bit more about what is going on. I really needed an interpreter in order to have that basic information'. (H1)

T3 Sourcing information

'I went to see my GP and he asked did I want an interpreter and I said oh yes, I need an interpreter, it's necessary. So he sent a letter out to (maternity unit). I got a letter from (maternity unit) and it said you've requested an interpreter, but, we have a staff nurse here who's able to sign, and then the second one said, the bill for interpreter would be a lot and ... it's too much, you wouldn't be able to have an interpreter and that we have a nurse'. (H1)

T3 Communicating with health professionals

Vision Impaired

'... I asked my husband to buy a pregnancy test. I couldn't do a pregnancy test on my own ... I had to ask my husband to read it for me'. (V8)

T2 Barriers to diagnosing pregnancy

'It (maternity unit) was easy enough to get to and it was easy to get to from work. So I just got a taxi and I could find my way there myself and that was really useful and really important for me'. (V8)

T2 Structural environment - transport

'... big room that's good but for a blind person that's really hard, it's like take a seat, where, all I can hear is this big massive room and I have no idea where the seats were'. (V8)

T2 Structural environment - navigating the clinic

'We went to my GP and my GP said have you thought about delivery and I said how about a homebirth and she didn't think it was safe. And I was quite disappointed and then I said I would prefer to have a kind of a midwife led service rather than a medical kind of service, or rather than a doctor, an obstetrician type service ... then said we fell out of the catch-ment area for a midwife service, led service so that wasn't an option'. (V8)

T1 Choice

'I liked the home birth idea, the reason why I wanted a home birth was because I didn't want to go to a big hospital because people come in and out, especially it was a big ward, could have been the Nightingale ward for all I knew, people coming in and out, you can't actually relax because you haven't, don't know who anyone is, you feel very, very vulnerable as a blind person, it could be anyone coming in and you can't see if someone is wearing a uniform or not or see their ID cards or anything like that, they could be taking my baby or they could be doing whatever and that's a very, very, it's a very stressful, very, very stressful environment for a blind person'. (V8)

T1 Choice

'... my GP said that if I went down the route of getting an independent midwife she would have nothing more to do with it [pregnancy]'. (V8)

T1 Choice

'At the initial meeting she (GP) handed me a booklet and they were obviously in an inaccessible format so I had to get my husband to read them for me'. (V8)

T3 Exchange or information

'There was nothing in any other format. The only thing I ever got in any other format was caring for your baby from birth to 6 months, or birth to 6 weeks and it was from the public health nurse after the baby was born and it had a CD in the back of it but the CD was like oh refer to the diagram in the book, it wasn't designed for blind people, it was designed for ease of access for other people. It's frustrating and it undermines you and it highlights the difficulties, that your different and you know I'm very lucky that I have that kind of a relationship with my husband and that my husband is sighted'. (V8)

T3 Exchange of information

'... didn't have access to books or anything like that that other people had, I kind of just looked up the internet'. (V8)

T3 Sourcing information

'... an Australian website, it's midwiferywebsite'. (V8)

T3 Sourcing information

'... I kind of felt that I was kind of shoehorned into the service and I don't think it was necessarily the most appropriate service. I think that I would probably have got on a lot better with a midwife and I think that a midwife, this might be my assumptions but I think the midwife would probably have more of a holistic approach, would probably have more of a human approach to an obstetrician and the midwife is experienced or an expert in normal pregnancy whereas an obstetrician is kind of more expert in problems and I didn't want to go down the problem route'. (V8)

T1 Choice

'scans ... I couldn't see any of those. I had to ask to hear the heart beat ... that was very, very exciting, it was a big strong heart beat'. (V8)

T3 Exchange of information

'When we went for ... the big scan, yeah that was good, she (midwife) was very good actually, she really explained what was on the screen'. (V8)

T3 Exchange of information

'... my GP would be aware that it's important for her to say where she is and tell me where to sit exactly and those kind of things because in a none familiar environment I wouldn't be aware. And for me building a rapport with somebody is really important for me you need to know what they're going to do before they do it. So if there's suddenly this hand or this wet thing or this cold thing or whatever on you, it's very disconcerting'. (V8)

T5 Interpersonal relationship and interactions with health professionals

'I didn't want to go through the whole big medical, medical thing and so I had made an appointment with an obstetrician and she obviously had the referral letter, God only knows what the GP put in the referral letter because the obstetrician then refused to see me. I asked her why and she said oh she doesn't think it would work out, ...that didn't make sense to me and I was a bit upset about it'. (V8)

T5 Interpersonal relationship and interactions with health professionals

'I found him (obstetricians) excellent. Going to see the same person all the time is really, really important, they can get to know me because my experience is that people tend to be a little bit, not patronizing, if they don't know, don't have an experience of blind people, they might not feel comfortable, they might not know, they might trip over their words or they might, just not feel comfortable and just not treat me in a normal way. And that's been my experience of doctors in particular. And so it was really sensible to go have the same person all the time'. (V8)

T5 Interpersonal relationship and interactions with health professionals

'... practically all of them asked me about my sight ... how much can you see and all that kind of stuff, ... and then they asked me about the condition. Then it was like well the child, will that have the same sight and we said it's a 50/50 chance and one person asked me would I like to be tested, another person asked me would I consider pre implantation screening. Pre implantation screening, warning bells going off in my head, is that legal'. (V8)

T5 Health professional's lack of knowledge

T5 Screening for inherited conditions

' I got really, really upset and really insulted by that, it suggests that being blind is something so horrific and so horrible that you'd be willing to abort a child which was one of the things that we sort of, screening and potentially aborting or pre implantation screening, that I would put myself through so much to avoid passing on one of my characteristics. I felt really, really upsetting. Its abnormal in my family to be able to see'. (V8)

T5 Screening for inherited conditions

'Screening ... the suggestion that you would do anything to avoid passing on these genesand its passing on part of me which is such a disrespect to a part of me that I'm not, proud of is a different, a feeling of being proud of it, it's who I am, it's what I am and I don't want to be different, I don't want to be cured, I don't want to be changed, I'm happy with the way I am and I think I'm ok the way I am. And I think that it would be ok for a child to inherit parts of me, like it would be ok for them to inherit parts of their father or whatever'. (V8)

T5 Screening for inherited conditions

'I'll keep my fingers crossed that your child doesn't have inherited the condition, which is fine and of course you hope that the child doesn't have the condition in some ways but again there was that slight kind of inference that it's not normal'. (V8)

T5 Perceptions of disability

'It's just subtle attitudes from people like you hear people saying this pregnant woman with a guide dog, there's almost kind of horror and it kind of makes you feel kind of grotesque and not quite human because they're just thick you know and when I was pregnant it was very much like how, you know that's dreadful, that was kind of the impression'. (V8)

T5 Interpersonal relationship and interactions with health professionals

'So we booked a 1 day thing with (name) ... a one to one session ... that worked out quite well'. (V8)

T3 Planning and preparation - antenatal classes