“Not Knowing”
Realisation
Many of the women interviewed had said they had not known they were pregnant for weeks or sometimes months, which had delayed them accessing care. These were divided into women who either had not noticed any of the 'cardinal’ symptoms of pregnancy (e.g. nausea, vomiting and amenorrhoea), or those who had symptoms but did not recognise them as pregnancy. Reported 'normal’ cycle irregularity masked the ability of some women to perceive classic pregnancy symptoms early enough to access antenatal care:
“To be honest, my periods aren’t regular so I didn’t know how many weeks I was. I can go without periods for 6 months… And because of my periods I suppose it took a while before I knew I was pregnant for definite”. (#9, Gravida 3 Para 2)
Multiparous women had also attributed symptoms such as amenorrhoea, nausea or weight change to life events:
“I had a bleed and I thought I’d just had a period. We were opening this pub and it was just really stressful and I thought I was feeling sick because we weren’t eating. We were working from 10 in the morning until 2 or 3 at night. So I just thought I was run down”. (#6, G2 P1)
Other women, in retrospect, recognised that they had experienced pregnancy symptoms but had misinterpreted these due to a lack of knowledge or experience. Key groups for whom a lack of reproductive knowledge was the main reported reason were those women with learning disabilities and young women. In these instances, it was often family members or close friends who noticed the pregnancy before the woman herself:
“I found movements moving about in my stomach and I wondered what it was… I didn’t have any sickness or anything like that, so I went to see my GP, he examined me and said I could be like 6 months pregnant”. (#2, G1P0)
“My dad had an idea that I could be pregnant because I was a bit swollen. He said “you’re pregnant”. I said “I haven’t got an idea”. He said “I think you ought to go and get checked”. So a fortnight later I went and checked, I went back home and said “Dad, you’re right, I am pregnant”. He went “I told you I was right didn’t I”. (#7, G1P0, learning disabilities)
We also identified lay hindrance as a barrier. Some women reported that family, friends and partners had also attributed the classical pregnancy symptoms to another reason, most evident in relation to symptoms of nausea and vomiting:
“We all just used to be sat there and I'd go to the toilet and M used to say 'she’s got an upset stomach’. That’s all she used to say, that’s all we put it down to, just an upset stomach, we didn’t think of anything else”. (#28, G2P1, learning disabilities)
Belief
17 of the 27 women interviewed stated that they had not planned to become pregnant, for another 6 this was implied and others suggested that their pregnancy was intended but mistimed. These women did not have a pregnancy 'mindset’, so were not expecting the symptoms of pregnancy, thus leading to a delay in diagnosis and initiation of antenatal care. For example, some women in their thirties had assumed age would more significantly adversely affect their fertility than was actually the case, a belief which in one instance was reinforced by their general practitioner’s initial misdiagnosis:
“When they (the GPs) said 'I was going through the change’ I thought 'well could I be’ because at 37 I thought 'well I might be’ because you hear women go through it earlier than I did and I think I got that into my head more than anything and I never contemplated that I was pregnant”. (#13, G5P4)
Other women reported that they didn’t believe they could be pregnant because they had been ill recently or had existing medical conditions associated with sub- or infertility, such as polycystic ovarian syndrome. Contraceptive failure was also a significant factor:
“Last time, it was just weird because I went for the Depo and they told me I was 25 weeks pregnant. I got caught on the Depo and I didn’t know that, and I took the pills and I got caught on the contraceptive pill this time… and I didn’t know with this one”. (#28, G2P1, learning disabilities)
In addition to explaining their reasons for late booking, women reflected on the experience. Most of the women interviewed, including young women and primigravidas, were aware of the optimum time to access antenatal care and were clear that they would have booked early, if circumstances had been different. For example, many of the 'not knowing’ women expressed regret at not accessing care earlier and acknowledged the desirability of attending for early antenatal care:
“If I had known I would have come virtually the first couple of weeks I knew, if you know what I mean, but as I say, I had no clue, no idea. I would have gone straightaway, yes, I would advise anybody to do that straightaway”. (#12, G5P4)
Many women expressed feelings of guilt at accessing care late; particularly in terms of the negative consequences for their unborn baby that could have arisen from missed screening and not following recommended dietary and lifestyle changes.
“I missed out on folic acid; I regret that very much. I took it with my other children. In some ways I think I let this baby down, I didn't give it what the others had… I feel guilty about that”. (#8, G3P2)
This was not a universal response however. Some women who had not known they were pregnant were pleased to have 'missed’ part of the pregnancy: impatience for the pregnancy to be over and their baby to arrive was expressed by several women and their partners; as one woman described
“It was really good because I thought I won’t have to wait as long, because 9 months is long. Even now, I feel like it’s been such a long time”. (#16, G1P0)
“Knowing”
The study identified a second large group of women who knew that they were pregnant but did not access early care. There were three key themes amongst these women: avoidance, postponement and being delayed by others, with avoidance and postponement themes emerging from 14 of the 27 interviews. Whereas women avoiding care had made no plans to access care, women who postponed their care intended to access care 'at some point’ in the future. Avoidance in the study reflected a woman’s refusal to consider the pregnancy and its consequences. In contrast postponement reflected a period of ambivalence about and evaluation of the pregnancy, as women considered their choices and priorities.
Avoidance
Two key themes were identified for why women wanted to avoid antenatal care. Firstly, some women were fearful of the social consequences of the pregnancy i.e. removal of the baby by social services, or the response and judgement from the baby’s father, their family and peers; particularly teenagers who feared the stigma and negative stereotypes that exist surrounding teenage pregnancy.
“I knew you had to go for all the tests and things like that, but I just couldn’t go. Because I was only 17, I just thought I couldn’t tell anyone, thought people would look at me like…I don’t know, just like I was, irresponsible … I didn’t want to think about it. So I thought I’d just put it to the back of my mind”. (#8, G1P0)
Secondly, some women, especially the most vulnerable groups such as substance misusing women and those with learning disabilities, described significant ambivalence towards the pregnancy.
“I had an idea about 2 months before, but I did a pregnancy test and that didn’t work, It didn’t say negative or positive, just no result came up. So then I just put it to the back of my mind, and my mum mentioned it again in a little while and I did another pregnancy test and that worked. (#15, G1P0, on methadone)
Postponement
This group of women did not access antenatal care on time but always intended to do so 'at some point’. For example, some well women chose to seek care at a time “convenient” for them. For many, a good past experience of pregnancy influenced their decision to postpone it, based on the premise that antenatal care was only needed if they felt unwell.
No, they’ve all been normal thank God and I think if there were any previous problems with them I would have probably found out but I just felt healthy, I felt OK you know, I just felt normal basically and I suddenly saw my belly getting a bit bigger and my clothes weren’t fitting as much”. (#12, G4P3)
Some women postponed access because of initial ambivalence and because they initially planned to terminate the pregnancy, only 'booking’ when they decided to continue with the pregnancy. Others delayed accessing antenatal care because of their religious belief that antenatal screening for fetal abnormality was unimportant:
“We are Muslims so we are not allowed to have an abortion. After 40 days from the pregnancy it’s not allowed for you, and before the 40 days you should have some serious problem like your heart’s not good or the baby is very damaged. So it’s not just I don’t want it, because I have already 1 child, so I didn’t think about that at all. I have to accept that really and thank God for it”. (#19, G2P1)
An intuitive process of 'do it yourself antenatal care’ was reported by some women which included self-checks and active self-care, in order to promote and monitor the healthy progress of their pregnancy, until they felt able to access care.
“I knew quite a bit anyway I kept referring to my books and just checking and thinking 'oh yes it’s alright’ so there was nothing bad. Bits I’d got from college and things like that, so obviously I was thinking I can feel this so I don’t think there’s anything wrong”. (#8, G1P0)
“I’d done everything that I could possibly do myself because obviously with having A, I knew what you could eat, what you couldn’t eat, this that and other, so I followed everything religiously, took my Pregnacare every single day, made sure I drank plenty, had plenty of rest, so I carried out what I knew, but obviously I’d had no checks to make sure everything was progressing alright, I’d had movement, I noted down when I’d had movement and things like that, so I’d done all I could”. (#27, G2P1)
Being 'on the move’ also acted as a barrier. For example, if a woman was returning home from abroad or working elsewhere in the UK, or living in temporary accommodation, they described deferring access to antenatal care until they felt settled in a place of trust and safety. Overall, there was a lack of understanding of the value and/or the 'portability’ of antenatal care.
“I didn’t know York, I didn’t have any transport when my partner was out at work every day. I didn’t know where buses used to go… But I didn’t want to change my doctor, because I’m going back home to my own house. I wanted to have my baby in [Sheffield], I didn’t want to have my baby in a town that I didn’t know”. (#6, G2P1)
Fear was again commonly expressed as having influenced their ability to access care. Some women postponed antenatal care as they feared family reactions and how they might cope with the birth of another child. For one woman there was active postponement of her antenatal care until she was 'safe’ from a perceived obligation to have a termination, after a negative response to the pregnancy from the baby’s father.
“I knew that my husband didn’t really want one, so I kept it to myself for a while… I really just did not want to go through with it [termination] and then I just kept putting it off… thinking, I’ve put it off that long, they’re not going to be able to do anything about it and we will have to carry on”. (#27, G2P1)
Many of the 'knowing’ women also expressed regret at not accessing early care, and demonstrated an understanding of its benefits. However, as one of them observed, their understanding of what was theoretically 'correct’ and desirable in terms of antenatal care might bear little relation to what had happened in their own pregnancy and the choices they had made:
“I would advise anybody who knew to go. I just don’t take my own advice!” (#27, G2P1)
“Delayed”
This group of women had usually been aware from a relatively early stage that they were pregnant and were willing to engage in timely antenatal care. However, due to a combination of reasons they had booked late. There were examples of professional failures, involving GP and/or nurse misdiagnosis, or mis-attribution of pregnancy symptoms to lifestyle or medical causes:
“I began to feel really sick and really unwell and lo and behold I was pregnant. But I’d gone to the doctors and I’d gone to see the nurse and I’d gone back repeatedly and they said because you’ve stopped drinking, stopped smoking it’s just all the toxins and such like coming out so nothing to worry about”. (#17, G1P0)
System failures also occurred, for example, letters not being sent and/or received which were typically the result of failings in secondary care. Women experiencing this often had a lack of knowledge of pregnancy and the antenatal care 'system’ and appropriate scheduling, or language difficulties which prevented them from challenging delays. However lack of empowerment was also a key theme: women passively accepted delayed appointments and typically did not challenge health professional misdiagnosis of early pregnancy symptoms. Some women appeared to rationalise the consequent delay as they were well, or were not in a pregnancy mindset to enable focusing on the actual gestation.
“I kept thinking 'well it seems a long time for me not [to be seen]’… I could have pushed it more at week 15 if I had thought about it, if I had had more knowledge, but I foolishly thought because I had been given the date that that was it - and I asked my midwife and she said it was a bit surprising but not anything to be worried about”. (#14 G1P0)