The way in which service providers gave care and organised the distribution of resources specifically to facilitate or accommodate the needs of women with a disability, when they accessed health services during pregnancy, labour, childbirth and in early motherhood, is discussed under this theme. The main areas of interest that emerged from the women's narratives included: providing information, planning and preparation, continuity of carer, assistance and support, communication with health professionals, and flexibility in policies and procedures.
Women spoke of the aspects of pregnancy and birth where the provision of information was essential for them to comprehend what was happening. There were many examples given of good information provision, but problems were also identified.
The ultrasound scan facilitates the visualisation of the baby and for many potential parents it is a mechanism of confirming the pregnancy and providing reassurance that all is well.
'I went there [to the maternity unit] about 3 weeks into the pregnancy... I had to go down to [name of city] to get a scan to see how far I was gone'. (ID3)' As soon as I had the first scan, you just feel, you think yeah there's definitely a wee baby in there and ... you're sort of, like, have to protect what's in there'. (H4)
Unfortunately, for some women with a vision impairment, the opportunity to visualise their baby was lost due to difficulties in seeing the screen when staff did not accommodate their needs.
'The ... screen was too far away from me and it was too small and if you sat up, went up on your elbows it disrupted things and they didn't particularly want you to do that and they weren't particularly helpful either'. (V10)'My experiences were really bad ... I couldn't see it because the screen was so small and ... the room was dark ...and [the doctor] was really shocked, 'You can't see that, the heart is beating. Look this is the hands, this is the face, yeah you can see it, you can.' He couldn't understand why I couldn't see'. (V16)'It's only a small screen, it's totally inaccessible'. (V9)
The room and surrounding environment was dark, so for women with a hearing impairment, lip reading the sonographer was a challenge, and obtaining reassurance via the verbal word was impossible.
'The lights were off and the screen was on and I said 'Oh excuse me I'm deaf. I really need the lights on because I need to lip read you and to see everything''. (H11)'I told her [midwife] I was deaf so she was no problem and pointed to some things then but because the room is kind of dark, she was conscious that I mightn't be able to see or hear what she was saying'. (H2)
Some women commended the sonographers on their awareness and sensitivity when trying to accommodate the woman's disability. Some took their time when scanning and explained the findings clearly and in a reassuring manner.
'The scan was brilliant, he [doctor] was ... really taking time to show me, he was going 'That's the baby's backbone and there's the kidney.' ... he did take time and he gave me a picture... I just found him very, very good'. (H4)'They [ultrasound midwife] did say everything is alright, thumbs up, good, good, fine, fine, so at least you had some information'. (H10)'The [ultrasound midwife] explained everything....which way he was lying and which way his features were ... they were quite good'. (V4)'She [ultrasound midwife] allowed me to hear the heart beat so that to me made my day, made my visit'. (V5)'They [ultrasound midwife] were good ...they were doing their job good ...looking after me and making sure I was alright and the baby was alright and putting on the scanning thing and telling me to rest myself and that kind of thing'. (ID2)
The women interviewed appreciated their efforts. Their actions and sensitivity contributed to the attachment process, which was occurring during the antenatal period.
'I wasn't able to really connect with it [baby] until that doctor just put my hand on the vibrations of the heartbeat and then I felt connected to it'. (H1)
But not all health professionals were so accommodating.
'They [sonographers] made no effort. They didn't want to know basically [about woman's impairment] and she said 'That's not my problem''. (V3)'They [ultrasound midwife] were quite rude really'. (V10)'I didn't like the woman that done the scan. I did tell her I was hard of hearing and I said to her 'Would you please explain things in detail?' and she wasn't a bit helpful ...it was a big deal that she had to explain to me... I could hear her sighing and huffing and puffing and I could see the expression on her face, it's like 'Oh you're bothering me.', like, and I was very upset over that'. (H13)
Obtaining reassurance was difficult.
'There was very little reassurance at any stage ... you were part of a process, when you came to the end of that process it was 'Next person.''. (H3)'I didn't come out [from scan] reassured at all. I was referred for a more detailed scan and then I was like 'Why, or what's wrong?' or, no nothing, nothing, he [doctor] didn't explain...'. (V16)'They [ultrasound midwife] just explain if you want them to explain, otherwise they don't say anything'. (V18)
For one woman with an anxiety disorder who went for a scan with the hope of being reassured that her baby was healthy, the experience of having repeated scans and an amniocentesis increased her distress. She also expressed the view that there was some subtle pressure surrounding consent.
'I'm 35 and I was worrying and my anxiety getting worse, you know, and the scan, the doctor saw something on the screen... As it turned out he had an enlarged nuchal... It's usually a sign of Down's syndrome so that's where we started from ... I had an amniocentesis done at 12 weeks, looking back I feel I was kind of pressurised into it ...the scan was done one day and the amnio was done the next... very quick and even the morning I was getting it done (pause) there was a tiny risk of miscarriage but you know, you need to have it done....I went along with it anyway. There was other tests done and they came back fine which was great. But then the next thing, if all the chromosomes come back okay, then it's physical disability or cardiac. So for the whole pregnancy I was having tests and tests. I didn't have a normal visit. I was always in the scan rooms...'. (M5)
Health professionals had a tendency to discuss the findings of the scan amongst themselves, with no understanding of the women's sensory loss and their resultant communication needs. The women interviewed described how they felt removed and detached from the conversation.
'They [ultrasound midwife and doctor] did it [discussed the findings of the scan] all among themselves, I was kind of on my own ... obviously this was an interesting thing and there was an army of them around the monitor all discussing the whole thing...'. (V6)'They would all talk to each other ... I was trying to work out what [the midwife and doctor were saying], and I thought, hey, there's something wrong here, I couldn't hear what they were saying or didn't know what was going on'. (H1)'I just kind of resigned myself to the fact that I couldn't see it [monitor], I would like to have seen it. There was a part of me, it's my baby, I want to see that screen'. (V9)
However, the women were very reluctant to complain about the services received.
'I was so annoyed [with the service] but I never complained, I should have complained. I wouldn't have the confidence in myself to know what to say or what to do'. (H13)
For the deaf women whose first language was sign language the exchange of information was facilitated by the presence of a sign language interpreter, but concentrating on the interpreter did interrupt their visualisation of the baby's image on screen.
'The interpreter was there ... I was so engaged with what was on the screen, I just wanted to look at my baby on the screen, I didn't want to look at the signing, yes it was great and they told me that everything was healthy and fine and that was a great relief as well and that was it'. (H12)
A proper exchange of information between women and health professionals is essential for high quality care. The failure to provide information in an appropriate or accessible format was instrumental, in some instances, in an inadequate exchange of information. This appeared to be caused primarily because of some health professionals' lack of sensitivity or knowledge of how to communicate appropriately with a woman with either a visual or hearing impairment. Consequently, women felt ill informed and reverted to seeking information from alternative sources such as the internet, family and/or friends. For those that used the internet, many used Australian or American information sites.
'Any information I got, I got myself. There was a leaflet given to me, just a leaflet on things you eat and things you don't ... [but] any information I got, I got myself. (P8)'Most of the research on the C section in general I had to do on my own'. (V13)'My mum has a friend and she has CP [cerebral palsy] and she had a baby, she had 4 kids now, so I kind of sat with her and asked her a few things'. (P7)'I didn't understand it [condition of pre-eclamptic toxaemia] 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'. (H1)'I never thought I had depression... I'd be googling depression and postnatal depression on the internet. Reading about it, and one half of me was saying 'I think that's me' and the other half was saying 'You're just imagining it. You don't get depressed. You're grand. You're just tired and bla de bla, over-emotional and over-protective.''. (M4)
One woman in the vision impaired strand contacted the National Council of the Blind:
'I rang the National Council for the Blind and I asked them for any books they had on pregnancy and ... of course I was quite apprehensive because what if this isn't the same information as what the hospital are providing, I kind of wanted to follow the rule of what the hospital were giving me'. (V5)
Some women who had had a previous mental health problem spoke of learning about their increased risk of postnatal depression from books.
'I really didn't know much about being pregnant and... I just presumed that, you know, I'd always have this depression but I never thought that it would escalate and I never thought of postnatal depression or anything like that, you know. It wasn't until I start reading books, you know, while I was pregnant ...that I realised that I am going to be more susceptible to it, you know'. (M1)
The women in the intellectual disability strand recalled being encouraged to ask for information.
'Well they'd say 'We can give you information. We can give you the help. Ask questions.', all the questions they had the answers to and I didn't feel like I needed ask them anything'. (ID1)'I asked them [midwives for information' [but, at other times] 'No I didn't really [ask for information]. Because I thought they wanted to do their job and they were busy... They could have helped me more ... they could have sat down and explained to me a bit more''. (ID2)'[Understanding of the midwives' questions] A little bit, not really. Not all of them. I'd ask them to talk more'. (ID4)
Where information was provided it was usually in print format, which was not always the most appropriate; this contributed to the women in the vision impaired and intellectual disability strands feeling ill-informed.
'They give me a book [with] pictures, baby pictures. How to do [look after] the baby, dress the baby... Difficult to understand. Read[ing] difficult for me. ... I ask them to teach me more'. (ID4)'On our first visit...after my doctor sending the letter off explaining that I was visually impaired and for all information to be put into Braille, they handed me a folder...there was a whole load of information booklets, leaflets, pamphlets, the whole lot, all in print and I nearly cried, I did, there was tears coming into my eyes, there was a lump in my throat'. (V5)'You almost feel lucky just to get it [information] now never mind any kind of format that is accessible for you'. (V7)'They give you booklets and leaflets and stuff and I did just say 'are any of these electronically available or in large print?' and they said 'no''. (V2)'They gave me a lot of leaflets [in the antenatal period] and everything like that but I said to the nurse I found it difficult to read it...I would look at the pictures and I tried to read it'. (ID1)
Women with an intellectual disability found the use of visual teaching aids at the antenatal classes informative:
'[Antenatal classes] Good...[They] teach me how to push baby out...[using] teddy bear, doll, baby doll'. (ID4)
Some women relied on the person who accompanied them to the maternity unit to read the information for them. Frequently this person was their partner. Relying on others to read the information was, however, very frustrating for the women.
'It's frustrating [to have husband to read it] and it undermines you and it highlights the difficulties'. (V8)'My partner said 'Look, I'll read it to you.' but I mean who wants to be sitting there with their partner going on about breast feeding and different types of labour and everything, it was something I wanted to read for myself as a woman, it wasn't going to happen to him... it's my first pregnancy like, I want to know what's going to happen to me'. (V5)'People would be laughing at me [because she couldn't read the information] ...it bothers me sometimes...it hurts'. (ID1)
Some would take the information home but rarely referred to it.
'I didn't read any of it [written information], I just said 'Thank you.' and I took it all because you don't want to offend anyone'. (V1)'They gave me a leaflet, a book, I didn't read it... I read one book...I didn't read that bit [what was going to happen over the next 6 months], I didn't read it, I didn't want to be fat'. (ID3)
The potential therefore for women to misunderstand the significance of the information being relayed by the health professionals was huge.
'My hands were getting swollen [woman developed pre-eclamptic toxaemia] ... I remember my wedding ring that I had, and they wanted me to take it off and it was difficult to take off and I started to laugh, I wasn't being serious and the nurse gave out to me for laughing and I didn't know what was going on. 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)
Women with a hearing impairment remarked on the importance of having an interpreter to relay the information from the health professionals in an appropriate and understandable format. Community-based models of care were more accommodating in meeting the specific needs of one woman with a hearing impairment.
'I really needed an interpreter in order to have that basic information, there were 3 or 4 people in ... [maternity unit] ...standing around, writing down notes, and I really, I didn't know what was going on...and I was nervous as well and when you're nervous it's harder to write English because ... it's not your first language'. (H1)'Without an interpreter it was just writing and therefore the information was very brief'. (HI9)'They [DOMINO scheme] did leave a number and some information leaflets and said that if you had any problems whatsoever don't hesitate to ring or whatever, or text ... it was just brilliant'. (H6)
Some women felt that the exchange of information was minimal, which was disempowering.
'You are trying to grab these people [midwives and doctors] and ask these kind of questions, 'Well what is going to happen?' or 'What is going to be done?' or 'What are you doing to me?' ... it is quite frightening ... when you are being met with a blank wall, it is scary, it is quite scary'. (P7)'I had big problems [at the first booking visit in the maternity unit]...I did not understand the information, the questions, do you smoke and go to the toilet and give a sample, I didn't really understand anything what was being said to me'. (H10)'You don't know what is happening to you .... you have an alien in your belly, in your tummy and you don't know what you're supposed to do, just go with the flow and you don't know what's going to happen'. (V18)'...my spirits were extremely low in the early stages of pregnancy and I didn't know what was wrong with me then because nobody ever said that to me, I thought when you'd fall pregnant, you know, I knew that you could be sick and stuff like that, but I didn't know that you could sink so low. Nobody ever explained that'. (M12)
One woman with a vision impairment recounted how she felt a loss of control and how the lack of clear explanation fanned this sense of loss.
'Loss of control, you're on the cold examining table and the man [obstetrician] touches your belly and okay, and listens and then says 'That's fine, thank you very much.' and you don't have a clue about where is the baby'. (V18)
While one woman with intellectual disability (ID2) praised the GP for his helpfulness, she felt that he could have provided further information.
'He [GP] told me more about my pregnancy. About when the needles were due for the baby, explained it... and explained eh...if you are feeling unwell or that come to me and, you know. And iron tablets as well. There wasn't enough... telling you things... there wasn't enough explaining I thought'. (ID2)
Family members attempted to facilitate the efficient exchange of information by acting as the women's advocate.
'My dad said to him (obstetrician) 'Can I speak with you outside?' and the doctor said 'Well I'm not going to break any confidentiality between me and my patient.' but dad said 'It's nothing to do with confidentiality, I just want to explain about her deafness ... because', he said, 'I'm listening to her getting upset and she's stressed about everything.' so he said 'Okay' ... From then on when he'd visit he'd make sure that I understood everything before he left the bed'. (H2)
Women with mental health difficulties reported receiving conflicting advice about medication, which was a major source of distress and anxiety, especially in relation to the possible effects to the fetus.
'They said they just had to check for things in the scan, to make sure that the baby was alright ...they were a bit shocked ... because the doctor ... said that I should never have been put on that medication because somebody of childbearing age shouldn't be put on it'. (M18).
Another woman recounted how she had been taken off her medication by her GP, which had a detrimental effect on her mental health.
'Yeah I didn't have my first visit till I was 19 weeks so in the meantime I had to go off the [drug] completely, I think I was 10 weeks and I started to get symptoms of the OCD [obsessive compulsive disorder] back again'. (M17)
Following referral to a specialist mental health service this woman was seen by a perinatal psychiatrist;
'He [perinatal psychiatrist] advised me to go back on to the [Names same drug] and basically weighed out what the options were, that if I was very, very stressed it's not good for the baby, or go back on a low dose of drug, it's the lesser of 2 evils'. (M17)
The lack of accommodation to these women's needs is often due to lack of knowledge on the part of maternity service staff. The importance of women having access to specialist advice is highlighted by this woman's experience:
'Well as soon as I found out I was pregnant I came off medication I was taking for panic attacks and I had my first kind of check up in the [maternity unit] at 17 weeks ... and by that stage I was suffering quite bad with the anxiety that I wasn't able to get out of the house ... So I mentioned it to the midwife when she was taking a history and she said 'Well you know there's things that we can do.' ...so they put me in touch with [name] in the [maternity unit] who was absolutely wonderful, got me in the same day and then the following day, she rang... to say [perinatal psychiatrist] had a cancellation and could I come in that afternoon and ... I found out that the medication I was on was perfectly safe, there was a mild risk in the first 12 weeks of the baby developing a hole in the heart but because I was well into 17 weeks at that stage that there was no concern. And it was one of the medications that you'd be allowed breast feed on as well... It was just so reassuring to hear that and find that something could be done'. (M9)
Arranging a sign language interpreter for interacting and interfacing with the maternity unit was complex and difficult for some women in the hearing impaired strand. Women requested an interpreter that was qualified and accredited to interpret and translate medical terms; however, sometimes this proved challenging. Some women were advised that they would have to pay for the interpreter.
'It's very hard to get an interpreter. There's only one in the mid-west and you have to book them 6 weeks in advance. It's the hospital's responsibility'. (H7)'I got a letter from [name of maternity unit] and it said you've requested an interpreter, but, we have a staff nurse here who's able to sign ... so I thought oh okay. So the first visit...she never turned up. She wasn't there. And that worried me... [eventually] I got the interpreter that I wanted but I fought very, very hard for that'. (H1)
Some contacted voluntary organisations and agencies such as DeafHear and they were instrumental in arranging an interpreter.
'My GP referred me to the hospital, DeafHear gave me an interpreter's name and I said I want [interpreter's name] to be my interpreter and we put it on the file so that was clear'. (H12)
Having an interpreter present facilitated a dignified and respectful interaction.
'The interpreter was there. I was able to have a proper dignified conversation and question and answer session. Whereas before I was just relying on trying to read their facial expressions and so on. So really 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'. (H1)
If an interpreter was not present, family members or friends were often asked to fulfil this role and to interpret for health professionals. Again the potential to misunderstand what was said was intensified.
'My father was there and he helped the chain of the communication. They [midwives and doctors] wanted [father's name] to stay overnight because if anything happened he would be ready and available to sign and communicate'. (H9)'Sometimes, depending on who was with me, they might try and interpret but I mightn't understand their attempt to interpret so it was very hard'. (H10)
Some units acknowledged the importance of having an interpreter and did engage the services of one without being requested or prompted by the women, but it could delay visits.
'When I got to the reception of the paediatric clinic they said 'Oh you are deaf and we need to get an interpreter.' and I said 'No it's alright you are only looking at the baby.' They said 'No, we can't do it without an interpreter.' and so I had to sit and wait until the interpreter came'. (H9)
The lack of appropriate and accessible information provided for these women was highlighted by the number who contacted one or more of the Trinity College researchers after meeting them at interview, to ask where to go for information on issues such as counselling, advice on contraception, or the existence of mother/toddler groups.
For many expectant parents, antenatal classes would be the common avenue of preparation but for women in this study this avenue was not always accessible to them. Many felt that their specific needs were not addressed or accommodated in the antenatal classes. A few described the classes as inflexible and unhelpful, contributing to their feelings of being unprepared and ill informed. Some women actually chose not to attend antenatal classes.
'I was only referred to an antenatal class ... in the last 2 weeks of the pregnancy which is absolute lunacy ... So no preparation, nothing as regards labour or anything like that, nothing'. (P7)'They [antenatal classes] were a joke. I got nothing out of it I have to say. I wasn't given any information'. (P2)'I wasn't impressed with antenatal classes... they did a whole class on breast feeding and I found that really upsetting because I knew I wouldn't be able to do it for long [due to MS drugs], there was no information on bottle feeding'. (P6)'I didn't take them [antenatal classes], mostly because of the lack of time and I knew I probably wouldn't be able to understand the teacher. I just felt it probably wasn't going to be worth it'. (H7)'I heard about them [antenatal classes] but I didn't go to them... [I] didn't feel like going to them'. (ID1)
The women described the classes as too large; some found the content, strategies and aids used within the class inappropriate.
'I found that [video] really difficult to follow because obviously I couldn't hear the person talking over the video ... so I didn't really follow it 100% ... I was lost ... because there was no subtitles on them'. (H2)'It is all geared to fully sighted people. I suppose if I went in with a white stick it's different but because you can't see my disability, they assume I don't have one'. (V6)
Women were unlikely to inform the facilitator of the classes that they had a disability or impairment.
'It was a big class I wasn't going to stand up and say 'Hi, I'm really worried about dropping the baby.' or I wasn't going to disclose that I have [type of disability]'. (P6)
However, a few women did find the antenatal classes very helpful and the strategies employed were considered appropriate.
'I found them [antenatal classes] fine, that's because I sat up beside her [facilitator] and I was in front of her'. (H13)'She [midwife] sat in the middle and everyone was around her and ... she went around everyone then individually and asked questions ... I found her very, very good and if we had any problems, she gave us her number then and said 'Ring me if you've any worries.' I found her brilliant I must say'. (H4)'They [midwives] were preparing me for the pregnancy and they also wanted me to talk about my worries because through my pregnancy I worried a lot'. (ID1)
Some maternity units were very aware of the women's specific needs and implemented measures to ensure that antenatal classes were accessible for women with a disability. Measures included ensuring the woman was in an optimum position to hear, engaging the services of a sign language interpreter or organising one-to-one sessions if appropriate.
'She [midwife] always used to look at me and she would kind of give me the signal, 'Do you understand?' I'd nod back to say yeah I was fine. So she was great now, she made a huge effort like and she made a point of kind of standing near me ...I found her very good'. (H13)'I spoke to the midwife concerned and I said 'Look I'm deaf.' .... So she said 'If you stay up the front all the time and if you concentrate on what I'm saying, you should be able to gauge from my lips'. She said 'If you're in my line of sight I'll make sure that you can see me.''. (H2)'I will be having one-to-one talk with the antenatal class in the next couple of weeks'. (V4)'There was a nurse ... when we [woman and manager of supported accommodation ] were going to the classes she used to talk to me one on one'. (ID1)
Women in the mental health strand reported receiving very little information on mental health issues or on how to access services should they experience a mental health problem in the antenatal classes. The women were of the view that the focus was on birth and breastfeeding with little recognition of the emotional impact of birth on women's mental health. If and when mental health issues were discussed it was mainly with reference to the 'baby blues', with little or no reference to depression during pregnancy, postnatal depression, anxiety, or psychosis.
'No there wasn't [any information on mental health]. There was a big focus on a natural birth followed by you have to breast feed or that'll be the end of the world'. (M4)
'I know I did attend a good few classes but I, it was really the exercises and the breathing... the puff and blow [class] I call them'. (M13)'I knew that the baby blues would probably last for a day or 2 but nobody told me that this could go on for a longer length of time'. (M12)'Not one of them mentioned postnatal depression, not one mentioned it, not one at all'. (M14)
A few women were of the view that there was a conspiracy of silence around mental health difficulties and childbirth that permeated society and maternity care.
'If they said that in the antenatal class, or if someone came into you in the maternity after you had your baby and said things mightn't be rosy...but...we don't say it to each other so why do we expect nurses to come and say it then. Nobody wants to burst anyone's bubble, when they're having their first baby that things mightn't be rosy, it might be rosy for them'. (M4)
When asked about preparing a birth plan many women described formulating one but the implementation was viewed with scepticism. A number of women expressed the view that a birth plan should not be done unless it is going to be carried through as they took up a lot of time, thought and discussion with family members. When the plan was then ignored, some women intimated that they felt out of control and completely disempowered.
'You got your birthing plan ... it's printed small but I filled it out... they were never adhered to so they're a waste of time'. (V6)'I remember they [midwives] looking through the birth plan I think there was very much a sense that 'Ah, here's another one of these annoying things.''. (P11)'When I went into labour ... the birthing plan was never mentioned so we didn't take it out of my bag... I was waiting for someone to ask and they never did so I said I'm not going to be stupid and take it out'. (H4)'They didn't really ask about the birth plan or ... did I have any plans of how I'd like the birth to go myself, and I did but I didn't want to speak up like, I didn't want them to think.... I felt like that they thought they knew best'. (M3)'I had it [birth plan], but nobody ever asked me for one'. (M12)
Although the above comments might illustrate a common problem that all women have, the effects were particularly negative on women with a disability. For example, one woman who had experienced a previous traumatic birth and was diagnosed with posttraumatic stress disorder and phobia following the birth of her first child had carefully considered, developed and agreed a birth plan involving a caesarean section. On the day of the birth, however, the anaesthetist decided not to follow the plan and tried to convince the women to have an epidural rather than general anaesthetic, thus causing unnecessary distress and fear for this woman:
'But there was a reason why that plan was there, it wasn't to indulge me...when she tried to get the IVs in and I was kicking and screaming, she got a notion that ...bullying me wasn't going to work and that I wasn't just looking for an easy way out...but she gave up in the end and had to put me out because I was in a terrible state'. (M15)
There was evidence that women in the intellectual disability strand of the study had a formal assessment of needs conducted in order to plan their care; this usually took the form of a case conference.
'They [multidisciplinary team] had a care plan meeting just before, about 2 or 3 weeks before I had [the baby] where there was a midwife, there was a whole load of people from the hospital, my social worker and [the houseparent] and my father, just talking about generally ... they basically were saying what would happen to me when I was in the hospital and if I get somebody to help me, which nobody did. They asked my social worker if she could get somebody to come in but they couldn't do it at night. So it was only the nurse [in the maternity unit] that came in and kept an eye on me'. (ID1)
In this case when the action plan was developed, however, it was not communicated to the woman until nearer the birth.
'They [health professionals in maternity unit] didn't really talk about it [a plan for when the baby was born] at the start, it was only when I was just about to have [baby], when all the meeting they were just talking about it that time'. (ID1)
Another woman in the intellectual disability strand perceived her needs around being pregnant were not being addressed during her stay as an inpatient at the local psychiatric unit.
'No ...they [nurses in psychiatric unit] were just helping with people that were mentally sick'. (ID2)
However, the majority of women with a physical disability or sensory impairment reported that there was no forward planning or assessment of needs conducted.
'No, no, none [planning] despite the fact I had brought it to their attention on numerous occasions they didn't make any attempt'. (V3)'No, none at all, no nothing, nothing, I didn't ask either ... no nothing I think I learned to adapt to situations'. (V6)'It was such a big, it was a life changing experience...I didn't know how I was going to be able to manage so there was no support. I would have loved somebody to come to me and say 'Okay, right, what do you need?' (P2)'No, no ... there was never a question of like would you need anything in particular during the delivery or after the delivery'. (P9)'There was no systematic effort or procedure to deal with somebody with a disability, or so I thought'. (V17)
The lack of forward planning generated a lot of stress and anxiety for the women and did impinge on the birth that they had anticipated and planned for.
'I felt a bit upset that there wasn't a plan'. (V5)'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' [woman had spina bifida] '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)
Women in the study appreciated any effort to address and accommodate their particular needs, but this was dependent on the individuals that they met.
'My patient services manager ... asked me...ideally what would I like'. (V5)'The public health nurse called [during antenatal period] and said 'I see you are due soon. I'm the public health nurse and I know you've a vision impairment. Is there anything at all we can do for you, just let me know.' so that was great'. (V16)'The public health nurse contacted me [during antenatal period] ... she gave us [woman and partner] her direct number and said 'When the baby is born give me a ring and ...if you have trouble breastfeeding we can sort it all out, don't worry about it.' kind of thing, she is kind of practically competent'. (V17)
There was a lot of evidence that when women with mental health difficulties attended maternity units where there was a specialist mental health service available, their individual needs were assessed. However, in the absence of a specialist mental health service many women reported that even if the maternity services were aware of mental health problems they did not follow up or accommodate the women's needs, and left it up to the women to let them know if their mental health deteriorated.
'Well they more or less said 'Well you are attending a psychiatrist so they are looking after that.' ... we didn't discuss it in any great detail but they said 'If you are having any problems let us know.''. (M16)'Researcher: Was that even brought up, was your mental health discussed?M 10: No, not really.Researcher: Or assessed?M10: No... because the anxiety was all in the past, I told them that I'd been on [medication] in the past and that I'd had a traumatic past, but no it was never really identified as an issue, and I trundled along okay until I was about 20 weeks pregnant'. (M10)'I found the maternity services didn't really care about me, it was all about the baby... they didn't make extra appointments, they didn't keep a watchful eye on me or anything like that, they didn't ask anything about the bi-polar or anything like that'. (M18)
Many women discussed the complexities and challenges associated with a lack of continuity of carer. Some did meet the same obstetrician but this was a local arrangement and was not the general practice. Meeting the same person at each antenatal appointment was considered a positive person-centred experience, but it was not the norm.
'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 patronising, if they don't have an experience of blind people, they might not feel comfortable, they might trip over their words or they might, not feel comfortable and just not treat me in a normal way'. (V8)'I wasn't getting shipped from one person to another. That was brilliant like, I was just going to one person, I wasn't getting tossed and going to see different people'. (P2)'I preferred that one-to-one and they know what is going on and you have got the continuity of the one person, the one style of lip reading and everything'. (H8)'I would have preferred the one doctor really you know ... because you kind of, you feel relaxed and things like that because you kind of get to know them so you relax'. (ID2)
Continuity of care was facilitated by community-based models of care, which were considered user friendly and person-centred.
'The DOMINO scheme is good because then you know the people. ...you're able to call [the midwife] at any time of the day or the night and you know that there's someone who's going to listen to you and help you out to the best of their abilities, I think that was good'. (V18)There was no problems I found it very easy to speak to them [DOMINO midwives], very, very easy. Everything was at your ease. Everything was done in the house... They are actually a brilliant team'. (H6)
A lack of continuity of carer contributed to the challenges encountered when communicating and interacting with health professionals. Some of the women interviewed expressed frustration at having constantly to relay information about their disability or impairment to different people at each antenatal appointment while others considered it undignified.
'It was different people all the time, different nurses, there was a range of different people and you saw whoever you saw when you got there'. (H10)'Dealing with every Tom, Dick and Harry in the hospital, I was afraid that I'd have to go explaining my case over and over all the time'. (H13)'Every time I had a different one [midwife or doctor], so you never really get to bond with any one'. (V1)
If the woman's partner or sign language interpreter was present the challenges encountered by the lack of continuity of carer were ameliorated.
'So many different people and that's okay as long as [interpreter's name] and my husband were both there'. (H12)
The women talked about the support they received from health professionals, that demonstrated the accommodation of the services to their needs. Partners, family members, houseparent and personal assistants were also named as key sources of physical, emotional, social and psychological support during pregnancy.
'The nurses can't do enough for you'. (P13)'I have very a supportive family, like my mum goes everywhere with me so she helps me out a lot with things like that, all the forms, lifts to the GP, lifts to the scans'. (V16)'I kind of depended on my mum'. (H7)'She'd [manager in supported accommodation] be there talking to me and she'd be asking me am I alright and you know she'd sit with me'. (ID2)'I have a PA [personal assistant] 5 mornings in the week ... only for that I'd be lost because I've no other family, my family is all in [place name] and I've nobody else here so only for the PA I would be lost'. (V11)
Women with an intellectual disability who were accessing supported accommodation described the manager in that facility in very positive terms:
'She [manager] did enough like, she was good ... she's like an angel ... because she comes in and she checks on you to see are you alright and she cares about you, she cares about people. She does ... she's the nicest woman I ever met. The nicest person I ever met. My mother said she's a lovely woman too. And ... she's there for you when you need her ... she's better than all the other ones ... she's just a nice woman...she's very caring ... different to all them other people in the hospital... she doesn't boss you around. She's not a bossy person. She'd be kind of nice to people. Making them feel comfortable'. (ID2)
Midwives were perceived as a source of strength, support, companionship and a conduit for effective communication, particularly during labour. Continuity of carer also helped to facilitate effective communication.
'She [midwife] was a fantastic help ..., she gave me strength, she gave me courage ... she didn't frighten me or anything'. (H13)'The nurse was staying with me and she [nurse] was lip reading and talking and talking and talking and it was great, it felt great, one-to-one... she was very nice, she was explaining everything'. (H8)'The midwives were excellent, the one in the labour ward couldn't give me any more help than she was giving me'. (V11)'The midwife she was nice... she sat in the room for ages talking to me...she stayed like and checked me ... she kept talking to me like and telling me what was going to happen ... she was telling me about the labour like, telling me what I'd feel like ... telling me like it might be a bit sore and she said 'Get the epidural and the gas. Then it will relieve some pain.''. (ID3)
Additional support provided by relatives, the maternity care assistant or manager of the supported accommodation during labour and childbirth was appreciated by some women:
'I couldn't have anything to eat and I was sweating profusely, my lips were completely sweating and I was hot ... [the houseparent] actually got a face cloth and she dipped it, she just cooled down my face'. (ID1)'I had my midwife... [and then] they brought in, she's like a carer [maternity care assistant], she sits with you, I don't know if everyone gets that but she sits with you through the pregnancy and tries to keep you calm, I had her, she was lovely'. (V5)
A minority of women described their early postnatal experience in a positive way. Both registered and student midwives were portrayed as being very helpful in the provision of information and assisting in the practical skills of parenting.
'Postnatal was brilliant now, it was really, really nice'. (V12)'Well they [midwives] were very, very good. They were very good with helping me with the baby. Yeah they told me everything I needed to know, they helped me bath her, everything'. (P4)'There was a student nurse there who was very keen and very kind of like enthusiastic, she was very nice'. (H1)'They [midwives] did a great job, I mean it now'. (H7)
However, the experiences were not always so positive. Some of the women's negativity emanated from a perceived lack of assistance and support. Midwives and doctors were depicted as unhelpful and un-accommodating to them and their disability needs.
'We [woman and baby] went back to the ward and it kind of went downhill from there'. (P10)'I am pretty sure about the way that it was managed [postnatal ward in maternity unit] and it was military style'. (H3)'I can't hear the crying [of baby] myself ... I was very angry over the fact that they [midwives] wouldn't call me and I had to constantly keep being awake, waking up myself to check in case the baby might be crying but you couldn't have a decent sleep, you couldn't rest because you couldn't depend on them, nobody was coming, nobody was checking'. (H10)
Women relayed how difficult it was to get assistance and support with their own self care and parenting skills.
'I had to get my mother to ask somebody to give me a wash, like even a bed bath, just even to clean the blood off me'. (P8)'She [midwife] told me that there was absolutely no way that the nurses could find additional assistance for me, that they didn't do that sort of thing'. (P3)'I told the nurse I wanted her to teach me [parenting skills] and the nurse said okay, they showed me how to bath the baby but they didn't teach me anything about bottles or hygiene or sterilisation or anything like that, my mother basically came and showed me how to do that'. (H10)'Well ... the social worker showed me how to change the baby and then how to wind him and that'. (ID1)'It's all very visual in hospitals, they hand you information on what exercises to do and they're all pictures...so I wouldn't say I did any of the postnatal exercises because I couldn't see them'. (V9)
One woman with a vision impairment recalled how she sourced information on parenting skills from books. She considered the lack of assistance and support in the postnatal ward as the norm for every woman accessing health services during early motherhood.
'I certainly got no help, I have no family so ... it was myself and my husband and I suppose everything I learned I read in books and stuff, even to bath him and how to change him ... I suppose in some ways I was treated no different than any other patient in the maternity, I was certainly given no extra help'. (V6)
While the women were recuperating in the postnatal period many of their partners would visit regularly to support and assist with parenting. This was welcomed by the women but often the midwives then assumed that the new parents did not require any assistance or support.
'The nurses were going around showing the others [women in the postnatal ward] how to bath their babies but because he [husband's name] was there with me pretty much all the time, it was more 'Ah well she's all right, she's looked after. She doesn't need us. We don't have to worry about her. We'll throw an eye over to her now and again. That's all we have to do.''. (P2)
Women did find the physical skills of parenting very challenging. Midwives tried to accommodate the women's desire to be independent and to address their individual needs, with some success:
'She [midwives] was putting the bath down on a low table ...and she was explaining to me what to do, to support the child's head like and when I was leaving him down to put my spine, to relax and to get enough grip to hold him'. (P12)'I struggle...the nurses showed me how to bath him [baby] the first time, which was only once...she was showing me how to do it and telling me how to do it and how to dry him and everything like that. And then towards the end when I was leaving, there was one more class but I had decided I could do it'. (ID1)'A [maternity care assistant] she was lovely, so nice, she showed me what to do, she came into me every morning to make sure I was okay'. (V14)
In relation to breastfeeding, difficulty developed when women with a vision impairment were asked to complete a feeding record sheet that they were unable to see. For others, being instructed to observe for the visual signs that the baby was positioned correctly on the breast, labelling the bottles used for storing their milk and locating the correct breastmilk in the communal fridge was impossible.
'I was told there was a technique [for breastfeeding], that you wait till the baby has got a big wide open mouth and then you shove him onto your nipple, I couldn't see whether his mouth was open and I couldn't see where my nipple was'. (V8)'The whole equipment, the pumps and all the breast feeding with expressing and labels and bottles and fridges, it was all up to me to do it, there was no assistance given, no guidance given'. (V6)'I found all the freezing of the milk difficult and the labelling and all of that I used to get annoyed and then when I'd have to go to the fridge to get milk out I'd have to go through everybody else's milk to get the right one'. (V6)
For one woman with an intellectual disability, breastfeeding was discouraged. The woman perceived this measure as a mechanism to prevent her becoming attached to her baby before going into foster care.
'They [midwives] didn't want me to get too attached...when they found out I was pregnant, I didn't feel that I was ready and of course then all this fostering came up and then they just gave me a bottle'. (ID1)
Practical assistance with breastfeeding was not always forthcoming and some midwives were described as unsupportive. Trying to communicate and breastfeed simultaneously was difficult for women with a hearing impairment.
'I had to ring the bell every time I wanted to latch [baby to the breast], there was a horrible, horrible older nurse there and I remember her grabbing me, it was like an invasion the way she caught me, it was horrible, just she was obnoxious'. (V10)'I had to learn how to breastfeed and they [midwives] were asking me all these questions about breastfeeding and... I wasn't able to write down notes back and forth ... I wasn't relaxed because I was trying to communicate with notes, that was very difficult'. (H1)
Some women acknowledged how the midwives did attempt to provide one-to-one care to assist women when breastfeeding but in many cases it was either too little or too late.
'The midwives tried [to assist with breastfeeding] but they were extremely busy, it was just a very, very busy time'... by the time I did get the one-to-one it was almost, it was too late because she [baby] had already latched on wrong'. (V9)'There's no support, no proper support and I was trying to breast feed and she [baby] kept slipping off and she couldn't latch on, it was quite distressing'. (P18)
For women with a vision impairment who were formula feeding, making bottles was challenging, and their partner was often designated this task. No practical aids were sourced or were available to help measure out the required amount of water and powder when making up formula feeds; one woman used the weight of the bottle as a guide.
'[Husband] would normally do them [bottles], he would make them and he would do them at night or in the morning before he'd go out to work ... and I'd put in the powder and he would put in the water'. (V11)'Eventually after maybe a week or 2, I started to cop on myself by the weight of the bottle and I used that as my guide like'. (V5)
When preparing for discharge home one woman with a physical disability discussed how a case conference was convened. This was viewed as a positive initiative and resulted in the assignment of a personal assistant, which facilitated her independence.
'There was a big meeting with the public health nurse, the OT [occupational therapist], the social worker, I had an after care worker at the time, doctors they were trying to get what would be best for me ... the OT came in and asked me what I wanted ...there was a list of stuff that I needed to get'. (P12)
However this initiative was not common practice.
'There wasn't any [discharge planning], no one asked me how did I think I was going to cope when I got home being visually impaired. Would I manage to make him [baby] up feeds, little things like even washing or cleaning the umbilical cord, things like that, no... the public nurse, she wasn't even aware I had a visual impairment, the hospital hadn't even informed her'. (V3)
The principal source of support available to women in the early postnatal period was family members or partners. For one woman from the intellectual disability strand, support from her sister was significant in the early motherhood period. While the women were in the maternity unit partners often took time off from work to help with parenting skills, but often this depleted the amount of support available to the woman when discharged home.
'He [husband] took so much time off during my pregnancy for appointments and straight after having the baby that I ended up with no one at home with me when I came out of hospital. I had to do everything on my own which I don't think it's right'. (V3)'With breast feeding ... my mum was by far the best help ... I found other people [midwives] almost disempowering, not being supportive, so I was quite disappointed with that'. (V8)'He [husband] was absolutely invaluable, just even sometimes when I needed help in and out of the shower and in and out of my clothes, I was physically that tired'. (P3)'In ... the first 3 years certainly if you are visually impaired your partner takes on the role of doing everything with the child'. (V3)
Once discharged from the maternity unit the public health nurses (PHNs) were instrumental in instigating additional support and assistance for a minority of the new mothers. This additional support was in the form of either a home help or a personal assistant (PA). However, the women were critical of how the current role of the personal assistant is one of assisting the mother in her own care and independence but not parenting skills.
'She [PHN] got me home help. It was through her that I got the home help'. (P2)'I rang the public health nurse, told her I couldn't collect the children from school so child welfare issues arose then I got home help and they collected the children from school and they did a bit of light housework'. (V6)'They told me no, that the service [of a PA] wasn't for the child'. (V7)
A woman in the physical disability strand employed, at the request of the public health nurse, a child-minder on a live-in basis to assist with the practical aspects of parenting. However, she was concerned about the impact this person may have on the attachment and bonding process between herself and her daughter.
'Having somebody here is wonderful and it's great but she kind of can take over a bit and she's got a great bond with her [baby] and that's terrific and that's good, but... it's very, very difficult watching somebody else do all the bits with your own child, very, very hard. I'm convinced that I haven't bonded with her [baby] the same way'. (P18)
One woman was very complimentary and appreciative of the breastfeeding support received when she was discharged home, a midwife called to see her in her own home and provided support and practical advice.
'The best support I got along breast feeding was when I came home and there was a midwife who came to me for 2 days and she was excellent'. (V9)
Unfortunately not all of the women received this type of support. One woman was quite despondent and pessimistic about the provision of additional assistance and support.
'I've never been offered anything like that [home help or PA] or told anything about that. I don't even know about it really to be honest'. (P4)'I don't ask for help, you'd want to be fairly disabled in order to get anything in this country'. (V7)
For some women with mental health difficulties there was also a lack of service to meet their needs.
'[Husband's name] was even ringing her [the PHN] up from work, which I didn't know, saying There's something wrong'. And she came around and she said, 'Look there's nothing wrong with you. You're not depressed. You're just tired.''. (M4)
In this particular instance the public health nurse had a lack of knowledge about postnatal depression and said to this woman:
'If I came in now and if you were depressed [baby's name] would be up screaming in his cot neglected because you hadn't picked him up for the last 8 hours and you'd be down here in a state'. (M4)
This women's mental health deteriorated over the following weeks and her access to mental health services was significantly delayed causing severe distress not only to the woman, but to her partner and family.
Not all the women welcomed the additional assistance and support, finding that instead of being helpful, it was disempowering. Women often felt inadequate and unable to care for their baby.
'A letter... from my GP had gone to the health centre, without my consent, saying this person needs extra support and I'm worried about her. I felt totally violated...it was really horrible ... what it was actually telling me was you're not capable of looking after your baby, you're not able to do things'. (V8)'I was furious about that [extra help provided by home help], really angry about that, it was just it was so upsetting ... I think she [PHN] felt ah, extra help, that will be great, nobody was listening that I was actually doing okay ... of course maybe extra help would be nice but there was a very negative side as well as a bright side and I don't think having a few extra dishes washed and the hoover going around the house was worth the upset, it just made me feel totally inadequate, made me feel like I couldn't look after my baby properly'. (V7)
In some parts of the country, there is a specialist service providing support specifically for women with mental health difficulties during pregnancy, childbirth and early motherhood. Women who were fortunate to have this service provided to them found it extremely useful:
'...she [specialist support midwife] will pop up to me as soon as I give birth. She comes round and sees everybody after they give birth, which I think is great'. (M8).'Then they came up and said we have a bed, we're ready, the surgeon, everybody is in place, we're going to bring you down now and then [my] legs went to jelly and I couldn't move, I said to [name support midwife] 'I don't, I think we'll do it another day or I don't think we'll do this today'. And she said 'That's perfectly normal.' She walked down to theatre [with me]'. (M15)'[Name support midwife] rang me just to check up on me and she asked me how I was feeling and she said ...if there are any problems to call her'. (M2).'I think I had a very different experience of pregnancy than most people you know (pause) and [name support midwife] really understood this... any time I needed her, she was there. The morning I was going down for the caesarean, she came into me. She came up after the birth, like you know, and she sat with me and I was breast feeding and she helped me get that going'. (M5).
A few women with mental health difficulties in other parts of the country experienced a lack of understanding from staff in the maternity hospitals.
'They absolutely told me nothing, they gave me no help, no support...I was just another person, and I wasn't even looked at as a person, I was looked at as a hospital bed number ... they treat one person the exact same as the other person'. (M13).
This woman goes on to describe her experiences with members of the health care team.
'One of the nurses came in to me whenever I was crying and turned and walked out and I was sitting at the edge of the bed, like, crying for a couple of hours and the physiotherapist came in to give me all information and I couldn't even speak to her, I didn't know what she was saying and she never even as much as asked me was I all right, not one person asked me was I all right'. (M13)
Another woman's experiences following childbirth were as follows:
'...she sort of came in, she was very cross with me ...very firm, I suppose she, maybe that was just her job, I remember thinking, you know, it just wasn't the right approach for me, you know, because I don't like when anybody raises their voice or gives out, you know, I'd be quite a sensitive person'. (M12)
There was also a mismatch between what this woman needed and what the service thought she needed.
'I was in maybe a couple of days at this stage ...and I just wanted to go and I knew that I would recover better if I was at home... she [midwife] tried to explain to me that ... the reason why I wasn't getting home was because...I was finding it difficult, I was crying a lot and they wanted to make sure that I had the breast feeding...set up properly'. (M12)
Another woman felt that she was stigmatised when they heard she was on antidepressant medication:
'I found I was being watched, do you know what I mean, 'Is she alright with that baby or isn't she.''. (M11)
One woman who had mental health problems prior to birth and had been on medication, found the staff in the postnatal ward accommodating, sensitive and responsive to her needs.
'And she took the baby for a few hours to let me have a sleep and that was 'cos I was watching the baby all the time, wouldn't stop 'cos I was afraid of what was going to happen (pause) in case there was anything wrong with her so they were very good'. (M6)
The willingness of the community mental health nurse (CMHN) to ring the maternity unit in the immediate postnatal period was perceived by another woman as helping to maintain her mental health.
'She said 'I [CMHN] will ring the hospital and organise that the baby's taken from you and put in the nursery. You need sleep'. Because a lot of bipolar is linked to your sleep pattern'. (M18)
Some women did not access mental health support services in the immediate phase of their distress because they were struggling to make sense of what was happening to them. As their particular needs were not identified or accommodated, they did not recognise their distress as a mental health difficulty.
'I didn't realise what was wrong with me and when I think of all the times that I cried and I didn't know that there was actually somebody you could chat to, you know what I mean, because I didn't know ... and they're terrible, you're just handed a wee leaflet [on postnatal depression], 'Have a read of that.' What good is that like'? (M11)'I didn't know what was happening, I didn't know anything, you know, I had no, I didn't think gosh is this postnatal depression. I hadn't even considered because I didn't think I'd ever experience postnatal depression... I kept putting it down to first time mum as well, like maybe I just didn't know'. (M14)'My postnatal depression affected me in a way that I couldn't bear being in the house on me own and I had to get out of the house as soon as I woke up in the morning because I just was lonely, I was scared, I didn't know what was wrong with me'. (M13)'I had the baby blues but I didn't realise how bad I was, you know, and the baby was crying and crying and I just couldn't seem to get him settled...'. (M12)
One significant finding to emerge in relation to communication during labour, childbirth and the postnatal period was around the issue of informed consent. Women with a sensory impairment discussed how they often signed forms without knowing what it was they were consenting to. One woman did ask if the consent form(s) were available in alternative formats but they were not, demonstrating a lack of accommodation to those women's needs. Sometimes the woman's partner signed the form; therefore consent was essentially gained by proxy.
'There were [other] forms and things like that; that I just had to sign; nobody really goes through those kind of things with you'. (V8)'At the time that I signed the form I had no idea what I was signing'. (H9)'I just signed whatever they [in delivery suite] put in front of me; I didn't know what it meant though... I just signed the page'. (H10)'I got something to sign that was shaded. I did say I couldn't read it properly but she [midwife] read it for me and I trusted her I guess, there wasn't any jargon ... just consent to information and treatment'. (V2)'They [PHN and doctors] say injection and I don't know what the injection is for and they just say for sick, so you just go okay, they want to give injection, injection done and just not really knowing. They give you a book but I can't read the book'. (H10)
Some women felt embarrassed or ignored when their partner had to complete the consent form.
'You're a little bit embarrassed ... I wonder do people think I'm illiterate, you feel like standing up and saying 'Excuse me I'm not illiterate, I'm visually impaired.'.' (V9)'I needed to consent for baby to have the BCG [Bacillus Calmette Guerin vaccine], they [PHN] made [husband's name] fill it in the form, they wouldn't let me fill it in ... he did all of that kind of stuff and I wasn't asked'. (V8)
Women with an intellectual disability also discussed how informed consent was not consistently sought. For example, when a public health nurse was performing the Guthrie (Heel Prick) test on her baby, one woman with intellectual disability noted:
'No, (the Public Health Nurse) didn't (tell me). Maybe they forgot to tell me because they are busy anyway you know....I wondered what it was for. (ID2)'
However, in relation to pain management this woman felt she was given an explanation in sufficient depth by the doctor, which enabled her to make a decision and give informed consent.
'I just signed the form, the doctor...told me what could happen to me if I had the needle [epidural]'. (ID2)
Issues around informed consent were not just related to gaining a signature. The women recalled how midwives provided little to no explanation when interventions occurred during the process of labour and childbirth.
'The nurses were lovely, the midwife. But I felt they were doing things [interventions in delivery suite] without my consent. They were going to break the waters, like they didn't tell me ... I was being induced'. (H7)'I think they [midwives] were lovely, but they didn't really say that much, they didn't really tell you much, they just kind of done their own thing really...they didn't really kind of tell you anything'. (P4)
In contrast, one woman with an intellectual disability described how when her baby was ill while in foster care, her verbal consent for treatment was obtained.
'[Re signing consent for baby's treatment] Well like when he first went up to [name of regional town] they [foster parents] just went to her [foster mother's] doctor, I didn't sign anything at all, I was just asked is that okay and everything like that'. (ID1)
A few of the women in the vision impaired and intellectual disability strands provided evidence to suggest that the care provided by health professionals during labour and childbirth was person-centred and accommodating.
'He [obstetrician] just asked me what would I not want to do and I said I wouldn't want caesarean unless really necessary and he said 'That's fair enough.' and that was it'. (V1)'I got the epidural, I got the needle, and the needle wasn't working the first time and he [anaesthetist] said to me 'Is it working?' He was looking at me ...then he gave me the needle and it worked ... so he was good. I complained about my pain... he was concerned about it. He didn't leave the room till I wasn't in pain anymore. They ... listened ... to me'. (ID2)
Where the health professionals were empathetic and sensitive the women recalled the interaction in a positive light. This positivity was facilitated by health professionals adopting a partnership approach and accommodating to their needs.
'I told her [PHN] that I had [disability] like, she was like 'Oh what can I do for you? How can I make it easy?''. (P10)'One of the nurses, the midwives... said 'I've heard that the fatigue is the worst.' ... I said 'Yes it is.' and she said 'I'll take him [baby] tonight'. I was just so grateful that somebody understood that I needed to sleep. Half of me felt like kissing the woman, I thought 'You're a saint''. (P6)
A number of women reported feeling disempowered, scared and were unable to comprehend why their hearing impairment should impact on the quality of communication and information exchanged between them and the midwives.
'We [woman and partner] didn't know what was going on, it was kind of scary'. (H12)'It shouldn't matter to them [midwives in delivery suite] if you are deaf or hearing, they should still be prepared to communicate with you and explain what they are doing and what is going on, maybe they don't know how to communicate with deaf people'. (H8)
Often it was the assertiveness of their partner that changed the dynamics in the woman/midwife relationship and the exchange of information that occurred thereafter.
'My husband is very assertive, he is very willing to say 'What is going on? Please repeat.' We hate for people to say 'Oh fine.' and then just to walk off, so we are very assertive in reminding people and insisting that you tell me, talk to me, you have to push yourself, you have to be pushy'. (H8)
A number of the women provided evidence to suggest that the maternity units or health professionals did not recognise or accommodate the uniqueness of the women's needs. For one woman with a vision impairment her sense of disorientation was exacerbated when using the gas and air method of pain management.
'When I took that gas and air thing ... everything is just white and you think am I dying, is this the light I'm supposed to see and you stop... if someone had of said to me you're going to feel a bit woozy ... that would be good'. (V1)
There were a few instances of health professionals' insensitivity and lack of awareness of the need for person-centred care. The breadth of organisation and preplanning needed before attending for postnatal or paediatric appointments, for example, caused huge anxiety and financial loss for one woman attending a paediatric unit, which went unrecognised by her carers.
'We ... might be only home 2 or 3 days from the hospital and she [consultant paediatrician] could ring and say, this could be half 9 in the morning, 'Can you be up here for surgery at 2 o'clock?' [paediatric unit was in a major city and woman was living in a rural area]'. (V14)'We were heading out the door literally...to stay overnight to have this examination under anaesthetic done first thing the next morning, just as we were getting on the train [paediatric unit rang] we were told that that appointment was to be cancelled.' (V14)
Some maternity units were accommodating and flexible in their policies and procedures when addressing the women's individual needs.
'[Husband's name] had a 24 hour kind of pass, so he was allowed visit at non-visiting times which was great'. (V8)'I was allowed to change her [baby] on the bed [not usual policy] and I think that might have been due to the fact as well that I had got a disability'. (P9)
But this was not the case in the majority of units. Some units were very inflexible in their policies and procedures.
'I had to kick him [husband] out at 9 o'clock, your man [security guard] is there saying 'Come on, come on, come on, partners out, partners out.'...so I'm panicking going 'How am I going to lift him [baby] out of the cot?' I didn't know how I was going to do it'. (P2)'[Baby] started spitting mucus stuff and I was afraid I wouldn't be able to see [him] and I asked someone to take the baby for that evening and they didn't want that'. (V3)
Some procedures and policies were inappropriate or insensitive to women with a sensory impairment.
'Every time they were given medication, they [midwives] would continually get me to check the wrist band [baby's identification] with them...I couldn't read their numbers or their codes, I could confirm their name and address but I certainly couldn't confirm their file numbers and things like that'. (V6)'You have to have a car seat to bring your baby home, why would I buy a car seat, I don't have a car...it just didn't make sense'. (V6)
This woman defied the policies and procedures on occasion:
'I defied the rules and I changed the baby on the bed because I wanted to be able to see the baby to change him'. (V6)'I discovered a sponge in [shop] that you lay the baby on, I brought it in [to the maternity unit] with me and... they [midwives] didn't like it because health and safety... everything is made an issue of'. (V6)
This chapter has presented the women's experiences of accommodation during their contact with health services. Their experiences were mixed, with many stories of empathetic and sensitive staff assisting women during pregnancy, childbirth and early motherhood. A number of key issues were highlighted, however, including the need for sensitivity and awareness when giving information to women with a disability. It was noted by many that little reassurance was given by staff unless it was asked for and person-centred care was lacking in many instances. In particular, women with an intellectual disability required far more one-to-one explanation and advice. The importance of sign language interpreters was emphasised and women valued their presence. A clear need for women to have an assessment of mental health needs was identified and in those areas of the country where specialist mental health services are available, they were much appreciated. Lastly, women felt strongly that policies and procedures should be flexible for them, to improve their experiences of care. Despite the identified failings, women stated that they were slow to complain, which means that their voices are not usually heard by the main clinicians working with them.