Finding information and support
Women's need for information, advice and support in pregnancy features in most of the other sections. This section summarises:
- What people wanted to know
- Which sources of information and support they used
- The timing of information given
- Problems in accessing information and support
Especially in a first pregnancy, women wanted to know about various aspects of pregnancy' detailed information about the changes happening inside their body; how to take care of their health and the health of the unborn baby; understanding results of tests; what symptoms and emotions to expect; what birth would be like, including breathing, pain relief and possible interventions; how to feed and care for their new baby. Several people had felt less need for information in later pregnancies, but still valued reassurance that everything was progressing well and reminders of what they needed to do.
Most women had access to several sources of information. The pregnancy books and leaflets from their GP or midwife were generally well used and liked (such as ‘The Pregnancy Book' and 'Birth to Five'). Many also bought their own books or were given them by friends and family. Some used Internet sites and message boards.
Books were a good source of information. Talking to other women with babies also helped.
Did you, were you just very enthusiastic to go and get books and read them?
Yeah, I was, I wanted to know everything [laughing] about what was going to happen to me and all the different stages of pregnancy and what was going on in, inside me and what he'd look like now and so, yeah, I was, I was enthusiastic to read and find out information.
Was it quite easy to find good books?
Yeah, yeah, I mean even, like I say, the library had a good selection of books. I brought a good, got a few books from the bookshop, and I got lent books from people and so, yeah, it was, it was easy, definitely.
Did you look for information on the Internet at all?
No, because I don't know how to use it [laughing].
No, I would, my boyfriend is really good at that so if I'd wanted to I could have done but I didn't, no.
Did you talk to other people who'd had babies previously about their experience?
Was that helpful or unhelpful?
Very, very helpful.
Tell me about some of the ways in which that was helpful?
Well, one of my best friends has had a baby and just - I work with her as well - and just, I was asking her questions all the time about, you know, what happens and it was very helpful, definitely. It's good to know people who've had babies if you're having one yourself, definitely.
Can you give me some examples of things that you wanted to know that it was really useful to hear from someone who'd had a baby?
I really, I wanted to know about the birth [laughing]. But she didn't tell me too much about that, thankfully. That, no, just general, just general health questions, really, and should I being doing this now and should it be like this now and should my ankles look like this now? And things like that really.
The pregnancy books given to her by the GP provided useful information about pregnancy week by...
Right, so like a science bit?
Yeah, a science bit, yeah. So you know, you know that all, your baby's developed its eyes now, and eyelashes, and little things like that, you know, so.
So is Emma a pregnant woman in this?
Yeah, yeah. So
And did you find that helpful?
Yeah I did. That was pretty good because, you know, even if I didn't read it all the time, that I could go there, and it's like 'I'm seven months now' so you go to seven months and you read there, you know, how far your baby's developed and what kind of experience she went through and what she had to deal with and things like that, and how she coped as well.
Mm. Was that different from your, your oldest son, when you were pregnant with your oldest son? Did, do you feel you had more information this time around?
Oh I had it, I had it both times.
Yeah, I had it both times. And the 'Birth to Five' as well is quite, quite a good book as well. That's more scientific. It's got everything in there.
Did they cover anything about like the threat of miscarriages or bleeding - things that you experienced?
It didn't in 'Emma's Diary', and I don't think it did in the other one either.
I don't remember reading anything about it in there, so.
So in terms of information about miscarriage...
Was there enough or was there nothing?
There wasn't, not in, not in those particular books. I think they're more for, you know, to kind of keep you going while you're pregnant, rather than to kind of scare you with saying that if you've, if you experience bleeding then you've probably miscarried and stuff like that.
Do you think it would have been helpful to have some information on bleeding?
I think I would have liked it separate to that book, [pause] and only if I was having problems. Otherwise I don't really think I would been interested in reading about miscarriage while I'm carrying a child. Yeah.
One of the few criticisms of pregnancy books was that they said little about things that could go wrong, such as genetic problems with the baby, terminations and rare complications. One woman would have liked more about miscarriage in her pregnancy book. But people recognised that these topics can scare people unnecessarily (see Interview 25 above), and some women had read too much and frightened themselves.
Professionals should use clearer language and not talk down to younger women. Pregnancy books...
I'd ask them, I'd actually tell them that you need to get on the wavelength of the, the person that you're talking to. Because most of them they do talk down to you as if, 'I know what I'm talking about, I'm a professional' and things like this and, 'I've done this for years' kind of thing. Because we did have one in the hospital that done that. But if you are going to talk to like a young adult like me at least sit there and listen to what they've got to say. And then try and say, not in the big long medical words, because people like me don't understand them, because I don't. There might be certain people out there that do, but I don't. But if you do, if they was I'd ask them to, like I'd say to them, 'You need to get on the wavelength that these, these people are on because you need to know what, what's wrong with them and that'.
And the thing about my cholestasis I think it should be in books, because I've tried, I've searched through books and there's not one book that I've read that has, that's mentioned cholestasis at all. I've searched through books. I've made my mum go to a library and get me loads and I can't find nothing about it in pregnancy books. So I think that needs to be in a book, you know, about that or what the medical terms are really, what causes it, what to look out for. You have pre-eclampsia and that in your books and things like that, but you don't have nothing about to do with your liver, or, or any other organs in your body that could fail on you, do you know what I mean, and things like that. I think it all should be mentioned in books.
She read lots of books at first but it made her anxious about what could go wrong. Talking to...
What about talking to other people? Do, do you talk to other women about their pregnancies?
Yes, I mean before I got pregnant I used to find people talking about pregnancy really boring and think, 'Oh, God, not again' [laugh]. But now I just want to yak, yak, yak about my pregnancy [laugh]. Luckily I've got a couple of friends who are actually pregnant at the moment as well, and one who's just had a baby, so it's been really nice to, to have them around. So, you know, obviously the, the girl who's had the baby is, she's been through it all and so we're all asking her the questions. And, but it's just nice because we're friends and we can just sit round and talk about it. But, yes, we certainly, we certainly do sit and chat about it [laugh].
Do you think there's a similar danger with talking to other people as there is with reading too many magazines, that you'll hear too many, I don't know, wild stories about things, and that might not be helpful in the end?
I think there's a little difference, as far as when you're talking to people you can see that they've come through this, and you can see that everything's fine, they're fine, the baby's fine, and they actually put it into a bit more perspective than reading a textbook. A textbook's just black and white, and I think you sometimes make your own ending up almost. And I think that's, that's the difference.
Women affected by more unusual complications frequently found the Internet a good way to supplement the information given to them by doctors and midwives. Again, a few people were frightened by what they read and some were advised by staff not to use it. Some commented that information from the Internet can be of variable quality and reliability, and it is hard to know what to believe. The sheer quantity can also be overwhelming.
The internet helped her find out more information about her condition (vasa praevia) and decide...
Where did you get information about the condition?
The internet [laughs]. The internet is a wonderful source of information for everything. I initially sourced information in different [cough], excuse me. I used the internet to source information initially because the - I checked medical books and different other sources, and I couldn't find anything. I'd spoken to different people as well, and couldn't find any information, so my first port of call was the internet, and then after that I was able, once I'd got some information and things were a bit more settled, I was able to go back to the consultant with information and then ask questions. Because obviously at the time you're so involved with what's happening that you don't ask questions. There's lots of things that you want to know - what happened - why did it happen? What - there's things that I didn't remember at all because you've had surgery, and there's big gaps that I - at the time that I don't - that I didn't remember. And you want those gaps filled. And family can do so much but there's bits that you need to, to find out, and looking at her [daughter's] medical notes, and my notes, you can piece together different things, but it's still a lot of medical jargon and things, that you want to ask questions about.
She looked up diaphragmatic hernia on the internet but was so shocked by the information she...
That night I remember I looked on the internet to look up diaphragmatic hernia and some of it said that there's an eighty percent mortality rate, and I just couldn't take it in, you know...
My boyfriend got the impression that it was just a little operation he'd have to have afterwards, and then be in hospital for a while and then come out. And once I saw that on the internet I didn't look any further, I just didn't want to know. Because some people go and do loads of research and find out the best hospital and the best surgeons and all that kind of thing. And I just remember being paralysed with shock.
Specialist charitable support groups, many of which have their own websites, were also a highly valued source for people with specific conditions or complications, although a few found it difficult to approach support organisations (see Interview 31 below. See also Healthtalk website on Antenatal screening).
The Down's Syndrome Association was a really good source of information. The internet can give...
What do they offer you?
Well they've got, they've got lots of resources like books or videos or, I think they've got learning materials, and they've got sort of specialist workers who work with children or develop the curriculum in schools.
Can you just, what, ring them up and ask questions or ask for materials and things?
Yeah, or you can visit their office, and they've got a website as well, so I've looked at the website a few times, and I suppose that's the main, the main place. But I really think they're good and they give like a children's party at Christmas, you know, which is nice for them. They do some good things.
Apart from written sources such as books and websites, most information about normal pregnancy came through regular maternity appointments with GPs, midwives and obstetricians. Mostly people were very satisfied with this support, although a few felt they got conflicting or misleading information. Antenatal classes were another generally popular source of information for those people who went to them. At the classes, tips from other women were valued at least as much as the information from the class teacher. Informal conversation with other pregnant women or new mothers also helped (see Interview 02 and Interview 10 above. See also 'Antenatal classes and preparation' and 'Maternity care and antenatal visits').
Some people turned to family members such as mothers or sisters for support and advice, whereas others preferred to talk to friends or professionals. A few said advice from family members sometimes conflicted with professional advice, and they had to decide which to follow. (See also 'Advice on health and lifestyle').
Her mother gave her some useful advice, but she also relied on information from parenting classes...
And what other information did you get from the parenting classes that, what was the most helpful thing?
What was quite useful is about - I know this might sound basic - but just about washing your baby and not to use too much of the soaps and the lotions. And, and I don't - like, because my Mum's like, when I went to stay with my Mum, she was like, you know, putting baby lotion on, "The skin's dry on your baby" and that. And it's best, from what I understood from the classes to leave, leave the skin alone, not put any lotion on it, because it can make it worse. It, I think they were saying that some children get eczema or something from that as well. And that all worked, because her skin I found was fine, I didn't put anything on it and she was fine with that. So that was quite helpful, otherwise I would have been putting loads of lotion on this baby and loads of soap and, and it would have ruined - or maybe just irritated her skin.
Mmm. So sometimes what your family were saying, like your Mum in particular, was going against what you were hearing in the classes?
It looks like you were leaning more towards the kind of...
Yeah, because it sort of made sense in the, in the sense that what they were saying is what exactly is in that lotion, really? And it's not the purest of the pure that you can put on your baby. Water's more pure, isn't it? And just a little drop of whatever in it is sufficient. And when I was washing my baby and that, I found it does work. It did help her skin. If it didn't, then I would be saying, “Well actually, it doesn't work." But my Mum did give me some useful information as well, because the baby had really sort of dry scalp on top, and she said, “Put Vaseline on, leave it for a bit, and then get a comb and comb it out, and then wash her hair. That way the scalp bits will come off”, and that worked. So that was like useful for me from my Mum as well. So I think it's just thinking for yourself, as well, what you think might be useful.
And using your experience to decide.
Yeah. Right [laughs].
Katharine found out information from the midwife and her mum.
Where did you get your information from?
Maybe from the health, the midwife.
Midwife and did you look on line or read any books or anything?
So the information the midwife gave you was good enough.
Mother: And what about me?
And my mum.
Several women had been especially helped by information from their local Sure Start project; other voluntary groups such as a specialist project for Asian women had also been used.
Timing of information was important. Most women wanted information very early, when they were feeling most unsure and anxious. Some felt they were given good advice and reassurance at their first visit to the GP, but others would have liked more. The gap between that first visit and their booking-in appointment with the midwife at 10-13 weeks seemed long, and some women did not want to trouble their midwife or doctor between appointments. (See 'First contacts with services' and 'Maternity care and antenatal visits').
She would have liked more opportunity to talk to staff in the early weeks and needed reassurance...
Were you surprised to be told that?
Yes, I mean, I was, I was more scared I think.
It was all so new, like I couldn't decide even whether I was supposed to tell my parents that I was pregnant or whether I should wait 12 weeks to do that. Or, it was, it seemed like the biggest thing that had ever happened to me but I didn't know what to do or where to go [laughing]. Emotionally I think it was hard. And of course I went out and bought a bunch of pregnancy books and I really, that was the way that I learned about things. Or the, the way that I scared myself and made myself feel better because, of course, the pregnancy books all talk about high risk of miscarriage in the first trimester. But they can also be reassuring. I mean they, it's nice to have information, I think.
Would you have liked to have more information from a midwife though?
Absolutely. I think it, it's hard to tell in books what is important because I think they try to cover everything, especially the things that can go wrong. You start to get the feeling that everything's going to go wrong in every pregnancy, and I think it would have been nice to talk to someone who could say, 'Yes, there are these terrible things but chances are everything's going to be okay.' I really would have liked to have someone talk to me [laughing]. In the end, I told my Mum almost right away and she was a great emotional support. Because she has 5 kids of her own [laughing] and has got through everthing. I mean, I think that was what I was hoping to get from a doctor or a midwife or something, just a little bit of that support and information.
The midwife didn’t give Tina enough information.
And what was that sort of support like?
She was, she was OK. I had the same sort of midwife, I had the same midwife all the time so that was quite, that was quite good. She was, I didn’t… the only thing that I must say about her that basically she didn’t give me a lot of advice on the fact that they were places to go like that you can go and help like at the centres and things, that I found that out afterwards. Like there’re groups that you can attend and I didn’t know anything about that. She didn’t tell me. And there’s certain money that you can apply for as well like a grant to help you, she didn’t tell me any of that. I, it’s only through other people that, that I know that have told me that so [laughs].
But I thought that’s what they’re being supposed to do is to be able to give me advice and find out about me and …
But, no, I didn’t have anything to do with that at all. I didn’t know anything.
But she, did she give you any information about being pregnant and that sort of thing or …
Not really, no [laughs].
In later pregnancy, women needed information early enough to think about birth choices. This was a problem for women who went into labour early and had not completed their antenatal classes (see 'Looking back - Preterm birth and special care').
Women's satisfaction with their care was affected by how far they felt in control and understood what was happening. Some women with a relatively straightforward labour were unhappy because they had not been able to do things as they wanted or felt staff had not listened, whereas others felt well involved and informed, even if they were making choices they had not originally intended. If an emergency intervention is required during labour, there is often not enough time to discuss the implications in great detail; some women wished they had known more at an earlier stage. However, some were reassured when staff explained after the birth what had happened and why. (See 'Thinking about where and how to give birth, 'Looking back - vaginal birth' and 'Looking back - caesarean birth').
Some women wanted more information during pregnancy about what to expect after birth, for example about feeding, washing and changing the baby and sleeping patterns, and recovery after a caesarean (see 'Looking back - caesarean birth' and 'Feeding and caring for the baby'). One woman wanted to know more about postnatal depression. Other people felt they had enough information, or thought it would be difficult to make sense of it all until they had the baby.
Several people commented on the need for clear and understandable information. This might mean explaining technical jargon or long medical words (and see Interview 13 above), or having more available in another language. One woman suggested written birth plans (which her midwife considered unnecessary) could particularly help people whose first language was not English. Women also wanted advice that was sensitive to different religious and cultural needs.
Her midwife posted her blood test results with no explanation. She was worried that some were...
When my midwife did eventually get hold of them, because she didn't want to lose them - she just told me to keep them with my notes - she posted them through my door. And then I opened the letter and I was reading this, and I didn't have a clue what it meant, but on the top it says, 'This investigation shows abnormal results', and I kind of panicked when I read that, because I don't understand what any of these meant .
So, give us an example of what it says on the report.
Well, like for example, you've got WBCS and then its got value 5.5, ranges 4.5 to 11.0 and I hadn't a clue what that means [laugh]. And then it's got RBCS, which I know now is your red blood count cells, and HB, which I know now is your iron level. You've got HCT, and it says 0.322. And all three of these came up low, and I didn't know what that meant. I also had a ESR and the value was 23, the range was 1 to 17, which I don't know what that means, that came up high.
And was that the protein one, did you say?
That was my protein was too high. So this is since August that I've had this done, I've only now got my results.
And they arrived when? So you had them done in August, they arrived?
She posted this through my door... I saw her the 15th of December, so she posted it through that week, I think it was.
After she'd seen you?
Uh-huh. Because I was the one that asked for the blood. And I said, 'I never, I haven't had my blood results back', and she said that she'd been chasing them up anyway, but she hasn't got, managed to get hold of them, so she had to go down there and get these results for me, anyway.
And you don't know if the sickle cell result is on there. And did she put a note through the door with it?
No, I only got the letter with my name, and just asked to put it with the rest of my notes for anything else. That was it.
Did she ring you?
Did you ring her?
So when did you then next see her?
I panicked and I got, my partner calmed me down, and he was like, 'Well, when you next see her, bring this and ask her what it -' and that's exactly what I did. I took it out and I asked her, 'Well, I'm a bit worried. I saw abnormal results, and I don't understand what they mean'. And she explained, she didn't explain all the rest of the results, she only explained the ones that I was concerned about, and that's when she told me that my iron level was low and that my protein was too high, and that was it. But even with the protein, like I was mentioning before, I was a bit worried about that, she didn't go into detail about it but then she didn't seem concerned if that was a problem or not. So I'm worried about it, because the pre-eclampsia, what if I do have that? And they're not really bothered about it, to be honest, so.
The pregnancy book from her GP was useful but she would have liked it in Urdu. (Audio clip in...
And this book that they gave you, was it in Urdu?
No, in English.
So how did you find out?
No, I can read English a bit, and if I don't understand a word, I can ask my husband and tell him that I don't understand.
Your sister thought you should not have read it. What do you think? Was it good that you read it or should you not have read it?
No, it was OK, you have some idea at least, you are better prepared mentally for all that is going to happen. No, I think the book is necessary.
Should it be in Urdu?
Yes, if it is in Urdu it would be better, because I do not understand everything in English. You know, in Pakistan we may learn by memorising and we can even get through exams, but when it comes to speaking it is not good there. I can understand a bit what the doctors say, but the accent is very different from Pakistan - and I cannot understand.
Does anyone ever go with you to the doctor's?
Yes, Aunty goes.
Right, and how is her English?
She speaks broken English, but she can say a few words, the doctors can understand her.
She tells me to speak as well, but I feel if I say anything at all it should be correct. If it is Urdu or Punjabi then it's better, one can communicate properly.
When you go to hospital, do you cope yourself or do you ever call for an interpreter?
They asked me this time, the midwife asked me that if I needed an interpreter they could arrange it. I will find out next time I go.
What did you say when they asked you?
I said it would be better if they can get Urdu or Punjabi.
Does your doctor have an interpreter?
No. We can cope with our broken English.
Having a written birth plan could be especially useful for people who do not speak English as a...
I mean, again, if it's someone who keeps themselves well informed or, you know, speaks English and stuff like that and can - it's not so bad. But like obviously in this area, again, if she [the midwife] was doing that with other people - being that we have an area where lots of people don't speak English as their first language - if other people she hadn't made a birth plan with, that could make it stressful for them, do you know what I mean? If that's what's supposed to happen and doesn't happen. And you've got somebody who only speaks Urdu going with her husband, who doesn't speak much English as well. Or you get a Kosovan family who don't speak much English, and they go to hospital with no birth plan, that could be quite serious.
She would have liked more information that related to her religion and culture. (Read by an actor.)
Don't be afraid to ask questions if you're pregnant - ask. Because, you know, if you're not sure about something, if you're scared to ask anything, just go and ask them. Even when things are not going to plan, in terms of what you've been diagnosed with as I was, you know, the first time round, then ask. Ask somebody, where do you go for support and help? I was given leaflets and things, you know, like when I lost the baby, but nothing that I felt was related to me in terms of my religion and culture. It was all, you know, the SANDS [Stillbirth and Neonatal Death Society] and what have you and things, but I didn't feel I could sort of like just ring them up. You know, you needed that push to do that. I didn't have anybody to push me to do that. I didn't have somebody saying to me afterwards, “Oh, look, you know, we're really sorry, and, and this, that and the other. And you must go.” I didn't have that care after, when I left the hospital. I was just sort of dealing with it myself, the first time round.
Last reviewed May 2017.
Last updated May 2017.