Early Access Research Qualitative Research

1. Early Access Research Qualitative Research 15th April 2010 Debrief

2. Review of Objectives Key objectives are: • Identify the reasons for women delaying access to maternity services • Identify service barriers to access • Identify best practice in overcoming some or all of these barriers • Understand key needs of PCTs regarding locally activated toolkits Other specific objectives: • Identify attitudes to, and awareness of, the Booking Appointment, its importance in a healthy pregnancy, and the pregnancy system in general, particularly for vulnerable groups and ethnic minorities • Identify the relative importance of informational, social, cultural and practical barriers to the different groups • Identify motivating factors that push towards early booking, and develop these into stimulus materials for the second stage of research.

3. Summary of sample Locations: Sheffield, Derby, Birmingham, London ( various), Plymouth, Manchester, Oldham, Northamptonshire Fieldwork dates: 4th – 19th March 2010

4. Context

5. About the sample • Across the sample, we spoke to wide range of different types of women • Ages, ethnicity • Higher/lower confidence, engagement and knowledge about pregnancy • Better supported, less well supported • Happier/less happy about being pregnant • There is often a combination of factors that encourage late booking with certain key practical and emotional barriers that can be used to segment women, and then additional barriers that also get in the way • In addition key barriers for ethnic groups are language and fear of poor cultural understanding • However a core theme running through the research and across the whole sample is poor knowledge and understanding about the booking appointment

6. Women know little about pregnancy and healthcare in pregnancy before pregnancy • Women do not understand the healthcare process before they first fall pregnant • And the healthcare and scans on offer can be different in different parts of the country • Friends and family can be the first port of call for information and advice • ‘Mainstream’ women then also often seek information online (if they have access) and via magazines • High reliance on family and friend support network for ethnic groups; and a suggestion that oral culture can be particularly important in some cases I’ve had a look on the internet, there’s a good site, I think it’s called baby centre and it takes you through a week by week guide thing. And did I get a book from the NHS book thing, got one of those with my notebook thing. So I’ve had a look at that and I’ve bought a book as well from the bookshop. – Mainstream early booker “It’s always baffled me that when you’re sat in a doctor’s surgery, I could tell you where to go for a Chlamydia test, I could tell you where to go for your flu jab but there’s nothing pregnancy related on the walls in your doctor’s surgery” - mainstream late booker

7. Visiting the midwife as first port of call is not common practice • Many women display passive behaviour on finding out they are pregnant • Most do their own tests (often multiple including a premium-price branded one) • Then they go to GP to confirm their pregnancy (n.b. rarely practice nurse) • Visiting the midwife as first port of call is not common practice • Then wait for midwife booking appointment to be sent by post, or they are told to book one, and do not query whether this is before or after 12 weeks 6 days • The first GP appointment can be a highly emotionally charged appointment from a woman’s perspective, but they often feel disappointment on leaving this appointment as ‘nothing happens’ • Some women find out they are pregnant by engaging with the NHS mainly because they have not recognised the signs and go to the GP for a medical check up I took a Tesco’s one and I thought no, it’s a cheap one and I did a Clear Blue and I did a digital one and they kept saying [I was pregnant]- teen

8. Why do women attend early? • Even those who did attend early, often did not realise that there was a particular need to do so… • They often went because they were told to by their GP • And the logistics worked for them • These women tended to be happy to be pregnant… • Excitement at pregnancy and keenness to start the pregnancy journey • Desire for information and advice about pregnancy, particularly if questions to ask • They wanted to ‘do the right thing’ during pregnancy eg eat properly • A desire to get the scan dates was strong… • Desire to get your scan dates and where relevant the neucal fold scan • And confirm your pregnancy dates

9. Pink = emotional barriers Green = practical barriers Some late booker typologies…. Interested in early booking Late discoverers Logistical problems Unexpected Unwanted Pregnancy The unengaged and ill-informed Expected Wanted Pregnancy ‘Social Disapproval Avoiders’ ‘Undecided’ ‘Fear poor cultural Understanding’ ‘Disappointment avoiders’ Uninterested in early booking

10. Pink = emotional barriers Green = practical barriers Some late booker typologies…. Interested in early booking Plus lack of knowledge about and low level of engagement about importance of the booking appointment Late discoverers Logistical problems Unexpected Unwanted Pregnancy The unengaged and ill-informed Expected Wanted Pregnancy ‘Social Disapproval Avoiders’ ‘Undecided’ ‘Fear poor cultural Understanding’ ‘Disappointment avoiders’ Uninterested in early booking

11. Lack of knowledge about booking factor is a key theme • A large number of women were unaware that there was a ‘best before’ date for the booking appointment • Even if they knew it would probably happen before 12 weeks and the first scan • The booking appointment is currently low profile and suffers from low engagement, and therefore is low priority… • Most had only a vague and not particularly compelling understanding of reasons for attending the booking appointment • At best it is seen as a non-urgent logistical and administrative exercise… • Most women’s focus is on the first scan during early pregnancy • And some can be nervous about what to expect… • What will the midwife be like? Will she be scary? • Will I have an internal examination? What will they ‘do’ to me? I didn’t know anything [about pregnancy], I’d never really looked into that. It’s not anything you think of looking into. I suppose you might do if you’re planning a pregnancy...Also if you’re planning it then you listen out to what other people are saying. You don’t listen if you’re not planning it. – Bangladeshi late booker - late booker I got the impression from my GP that it was just going to be an admin appointment to book in for my scans and take the details” - late booker

12. So how does this affect late booking? • Some women just don’t engage with or prioritise the booking appointment at all after visiting the GP (see in mainstream groups, but also a key factor in our Black African sample) • Women may not push for an appointment before 12 weeks 6 days if it isn’t available • Others think the healthcare system is all connected eg GP, midwife, early pregnancy unit, so if their appointment doesn’t arrive before 12 weeks 6 days they don’t push for it earlier or chase paperwork • Many of the causes of delay could be reduced / addressed by women themselves if they knew to attend by a certain date and why it is important to do so There’s no real reason for the appointment. They can just give you the book and everything at your first scan really, at the hospital - late booker

13. And many factors often combine with this as underlying factor • It is often a combination of both emotional and logistical factors, rather than one particular issue that results in late booking… • For example… • A woman finds out late she is pregnant (around 11 weeks) • She takes a week to come to terms with her pregnancy • And then rings to book an appointment with her doctor but cannot get one for another week • And as she does not understand that the booking appointment should be held before 12 weeks 6 days she does not ask to be prioritised I found out when I got back from holiday at 11 weeks and then I had to ring in to get an appointment with the doctor’s and of course it’s not an emergency. - late booker

14. Emotional barriers

15. Emotional significance of booking appointment is key barrier for these types • These types are not ready to emotionally bond with their pregnancy so delay the booking appointment • The booking appointment carries a level of emotional significance that prevents them from booking early • Although purely seen as a logistical appointment it is seen as a positive start to a pregnancy, not a forum to discuss options or termination • It is about helping the mother to prepare for the pregnancy and the route to the scan) • Attending the appointment is a sign of the mother’s acceptance and expectation that the pregnancy will continue • Perception of the pregnancy shifts from abstract to concrete • It feels important to identify early and ongoing contact points for those who are concerned about viability, and those considering termination • Particularly in the case of those considering termination as they often find other sources of advice outside of the GP

16. Disappointment avoiders Interested in early booking Unexpected Unwanted Pregnancy Expected Wanted Pregnancy I left mine because of what had happened before, I miscarried at 7 ½ weeks and I miscarried at 9 weeks, the two previous times, which had only been like 4 months before, so for me personally I left it and left it. He kept saying you need to go, you need to go and I was like no, I’m terrified that if I do go and I meet her and it’s going to all go wrong again and I just can’t get my hopes up, so I purposely in my mind I’d leave it until I got past a certain point that I thought perhaps that there’s more chance and everything will be all right - late booker Disappointment avoiders Uninterested in early booking

17. ‘The undecided’ Interested in early booking Unexpected Unwanted Pregnancy “No. It’s like a midwife isn’t it, you wouldn’t expect them to speak to you about, and where as I know the other person would be on the fence where as a midwife delivers babies….You wouldn’t go to the midwife for advice about a termination” Late Booker Expected Wanted Pregnancy ‘Undecided’ Uninterested in early booking

18. Social disapproval-avoiders Interested in early booking I had two babies both born 2009, I didn’t want to face the GP and midwives I was worried what they might say about that. They don’t understand - Somalian mother of 5 Unexpected Unwanted Pregnancy Expected Wanted Pregnancy Social Disapproval Avoiders Ethnic issues I was putting off going to the GP I don’t know why I suppose I just felt bad…I was going to be oldest mum at the school and I didn’t know how my 17 year daughter was going to react, she’s 25 weeks pregnant herself. I wanted to make sure she was ok with it before booking in and getting excited myself -Older mum, late booker TEENS/ OTHER UNPLANNED Uninterested in early booking

19. Fear of poor cultural understanding Interested in early booking They don’t understand that large families are good, lovely, it’s what you want, lots of children, they don’t understand it’s what we want, it is important...I will have 6 I think . 5 or 6 is enough.– Somalian mother of 4 Unexpected Unwanted Pregnancy Expected Wanted Pregnancy Fear of poor cultural understanding Uninterested in early booking

20. Fear of poor cultural understanding raised as a reason for delay • Somali and Traveler interviewees in particular raised the issue that there can be poor understanding of their culture within NHS • Somali women in particular reported negativity about large family sizes, and a lack of understanding about female circumcision in more suburban hospitals, lack of understanding that early testing is a negative • Several of the Somalian women interviewed reported feeling that they had received unacceptable discriminatory comments from NHS health professionals • The travelers can fear negative treatment due to how Romany Gypsies are seen and treated in their own country • Need to ensure midwives and GPs are sensitive to cultural differences, preferences and needs and more importantly this needs to be communicated to women

21. Language is both a practical and emotional barrier • Language difficulties are also key and a big issue raised across all ethnic groups (including Romany Gypsies) • Language is both a practical and psychological barrier as it is also about feeling at an emotional disadvantage right from the start • Has a significant influence on the interest and appeal of attending midwife appointments It was very difficult, having appointments, I couldn’t speak good English at the time. I came from Kenya, they do speak English but not that much. It was so difficult to talk them and they are not patient for you. You’d ask for a translator and it was very hard to get one. It was very difficult even in labour, they are shouting at you. I was 18 or 19 it was very stressful. The midwives were...very pushy. – Somalian

22. This was particularly raised as an issue for the Somalian community • Particularly raised as an issue for Somalian women and those who are not first generation… • Very limited opportunity for non-English speaking Somali woman to properly converse with medical staff • Even those who can speak some and/or understand spoken English felt seriously disadvantaged • Some reported being given English language documents only – which are later translated by a friend/family member • Few had had a translator provided (unlike Bangladeshi sample) • Even when a translator is provided there is a feeling that communication is poor – short and reduced to lowest level, not always sufficient to translate medical terminology effectively A lot of the GP surgeries have translators in but the women they’re not terribly forthcoming and it’s up to you to identify them and try to work in to what they need...they’re lovely people to look after but they take an enormous of trust and you have to build that up within the community and not just with one family, you have to build up the trust and build up a relationship with them for you to know what you’re there for and you are there to support to them – Midwife, about Somalian women

23. Practical barriers

24. Pink = emotional barriers Green = practical barriers Late Discoverers Interested in early booking Late discoverers Unexpected Unwanted Pregnancy ‘I I just delayed testing because I thought, like I said I didn’t have any symptoms that carried on, not having any symptoms and even though I kind of knew I was’ Late booker Uninterested in early booking

25. Logistical problems – a further or a single cause of delay Interested in early booking Logistical problems Unexpected Unwanted Pregnancy Expected Wanted Pregnancy I’m 25 but I’m not married, so I wanted to keep it secret like, I phoned and the receptionist said my name on the phone and wanted all the details, then she said, Mrs X, that’s your granddaughter, and my gran was in the waiting room. So I just hung up. – late booker You phone the GP and it’s engaged for half an hour then they tell you there are no appointments, to try again tomorrow. I had that for 2 weeks straight! – late booker Uninterested in early booking

26. The first booking appointment given can be inconvenient/inappropriate • Especially for those with a high need for childcare, and a lack of flexible childcare (esp. those with multiple children) • Try to fit appointments around school day and or limited ad hoc family/friends childcare • Paticularly ethnic groups where large families are common • Heavy demand or limited midwife schedule also be a factor • Difficulty/awkwardness of taking time off work, without wishing to reveal reason • Working mothers who may wish to keep the pregnancy quiet until ‘official’ at 12 weeks • Working fathers often wanted/or culturally required to attend • Unforeseen circumstances such as feeling unwell/morning sickness/tiredness may lead to rescheduling

27. Privacy feels essential for some faith groups • Pregnancy outside marriage is taboo in Muslim and some Catholic (i.e. Traveller) communities. • Irish Travellers get married immediately if this happens • Muslims can be ostracised / disowned. An unmarried pregnant Muslim woman is likely to be in denial about her pregnancy and trying to keep it a secret, so is unlikely to attend a booking appointment before 12 weeks 6 days • If that had happened to me, my father would disown me as he is very religious. Having a boyfriend is a major issue as a Muslim as it indicates that you are going to do things with him and getting pregnant outside of wedlock is a major issue and a terrible sin • Pakistani friendship pair, north • I knew a girl at school who got pregnant, she was a Muslim and really scared about going to the midwife. I didn’t even know what sex was but everyone was afraid of being friends with her in case their parents found out that they were friends with a Muslim girl who has gone and got herself pregnant at the age of 15.

28. Cultural issues also have logistical implications that may lead to delay • Some traditional Muslim women also describe a culture of not making a fuss (including putting yourself forward to get an appointment) • Also common to wait until other family members to initiate action on the Woman’s behalf e.g. partner, mother in law indicating a need for communications to target the community • Women can be scared to go back and engage if they’ve had a negative experience before e.g. female circumcision (although this was also seen in mainstream audience when a bad experience was evident) • In addition there is a need for female midwives and male intervention only if medically necessary for Muslim women • Although having an Asian doctor was not necessarily a positive either (fear of being treated according to their culture, not as a patient, e.g. dismissing concerns) • I am happy to have a male GP if he is a Western man, but I would want a female midwife... When I was seen by an Asian GP I felt he was looking down on me for dressing in a western way. – Bangladeshi late booker

29. Differences in health systems also raised as a potential reason for delay • Evidence that different health care systems in home country drives need for explanation and clarity about UK system and what the booking appointment is… • Women do not know how the system varies to their own country of origin and the role of the midwife there may be very different • Cost also an issue – it may be that they expect to have to pay as they would do in their own country • But also GPs/midwives need appreciation that their patient may be dipping into 2 systems (UK and abroad) • NHS staff can lack understanding of how healthcare works abroad eg visiting GP can be a solution to a problem

30. Pink = emotional barriers Green = practical barriers Unengaged and ill informed Interested in early booking Unexpected Unwanted Pregnancy The unengaged and ill-informed Expected Wanted Pregnancy I feel ok and I’m always so busy, it’s ok to put it off, it’s 9 months after all – mainstream late booker, Black Caribbean “you say you will get next week but then you forget as you have so much to do…“seems like the pregnancy is forever so if you leave it later it does not seem so long” Irish Traveller Uninterested in early booking

31. Key Barriers: Bangladeshi and Pakistani Muslims • Who they are (culture) • Strong overlaps between these two Muslim communities • Both value large families / multiple children • Tend to live with husband and extended family; husband and mother-in-law “rule the roost” • Values include no terminations; pregnancy outside marriage is taboo and sinful, pregnancy should be discreet and disguised (from men) as much as possible • Women may be British-born or foreign-born; issues vary more according to this differentiator than whether they are Bangladeshi or Pakistani • British born tend to be less traditional and more westernised – faithful modern Muslims – more likely to have a job & relationship equality (and more likely to book early) • Foreign-born tend to be more traditional Muslim women – e.g. don’t go out unchaperoned, don’t speak up or make a fuss, role is to be a good wife and mother – passive acceptance and obedience • Key reasons traditional women attend late: • Cannot attend unchaperoned; lack information and will not ask for it (passivity encouraged in culture) • Language and cultural barriers

32. Some quotes from traditional Muslim women In Pakistani society a pregnancy is hidden more that pregnancies of people in this country. For example if a traditional lady is feeling ill with morning sickness she will have to see who is around her at the time before trying to decide where to vomit. For Asians, especially Bengalis, Indians and Pakistanis, when they go into labour and have contractions you cannot even scream out, you are to show no pain. – Pakistani woman

33. Key Barriers: Somalian Muslims • Who they are (culture) • Likely to be first-generation who fled without parents & other family • Less familiar with NHS, less extended family support, English not first language (although some now fluent), less mingling with mainstream UK & other cultures • Muslim, with typical culture (no terminations, large families) • Children close together in age (cultural); some have children born in Somalia (& horror stories) • Do not mind attending booking appointments without men / with other women – close-knit female community where word of mouth is strongly trusted • Key reasons they attend late: • Lack of understanding of importance / timing of Booking Appointment & healthcare in early pregnancy • Can be linked to high incidence of miscarriage in community, esp .in Somalian healthcare system; until chance of miscarriage has passed, seen as little point in getting in the system • Experience / WOM of lack of cultural understanding (esp. large family sizes and female circumcision) and language barriers mean interacting with NHS is off-putting You don’t need to see a doctor until you are ‘official’ which is around 12 weeks

34. Several claimed they were not treated with respect during their pregnancy • Several women in this sample claimed to have experienced unsatisfactory interactions at some point during their contact with NHS health professionals • Not respected for their choices or seen as an adult in control of their fertility/family size/birth experience • Considered ignorant, unintelligent due to inability to communicate effectively and origins/immigrant status • Derogatory connotations of ‘giving birth’ alone, outside and without medical expertise • Feel patronised, not treated as individuals • Lack of continuous care from one midwife exacerbates sense of being judged

35. Lack of respect: some examples When I told my GP I was pregnant he said to me…how many children do you have. I answered ‘6’ and he said what do you want more for? Would you like me to fit a coil after this one? I have a friend she never sees a midwife because of how she was treated before. When she is about to give birth then she calls 999, goes to hospital and comes home the next day. That way she has minimum interaction with the midwives When I was giving birth I could not get them to understand me. The woman told me that I was lucky not to be giving birth in Somalia under a tree. She did not realise I could understand her, I don’t speak much English but I can understand it.

36. Key Barriers: Black Africans • Who they are (culture) • Feel the most mainstream ethnic audience • May have English as a first language • No particular religion (some identify as Christian) • Those we spoke to came from Nigeria / Kenya • Key reasons they attend late: • Feel very disengaged & ill-informed • Little understanding of why the booking appointment is important, or when it should happen I missed my first appointment, I had the appointment again for last Friday, I’m 16 weeks, but I just wasn’t feeling very well so I cancelled it” – Black African, south

37. Key Barriers: Irish Travellers • Who they are (culture) • Strong Catholic faith • No terminations • Pregnancy outside of marriage is frowned upon; marriage happens immediately • Girls typically marry at age 17-19 and start having babies soon after • Very large families common • Strong community support, strong extended family links within community • Relationships outside the community are not encouraged • Very family-oriented which extends to pregnancy; women take care of themselves during pregnancy • Key reasons they attend late: • Not really aware of BA’s importance; the scan is the milestone • Wait for GP/midwife lead to contact them • Over-confidence after first couple of pregnancies • Wanting to delay the start of pregnancy journey as ‘it takes so long’ • Strong community support and family-orientation means they do not look to the NHS first for information – they go to their mum / sister / auntie / cousin (etc) In your first pregnancy you’re dying to get to the doctors! Only the odd woman goes later because they’ve already had a couple of children.

38. Key Barriers: Romany Travellers • Who they are (culture) • Language a key issue, especially if recent entrants • Treated badly in their own country due to ethnic origin • Strong Catholic family values (termination not an issue) • Very family orientated; mother taking the lead and stay at home • As with other travellers can be isolated, and develop links with liaison staff who they trust • A good NHS experience also likely to drive trust in system – compares well to their own system • Key reasons they attend late: • Some lack of awareness that healthcare is free (paid for in Romania) • Language barrier to coming forward • If no experience of NHS may fear similar poor treatment to in Romania due to ethnic group • Lack of knowledge of UK system and midwife lead

39. Medical Professionals Views

40. GPs and Midwife views coincide about target groups • Both groups agree about key reasons for some groups being late bookers • Teenage mothers can be late but not universally • Partly about ignorance, denial, partly about feeling judged • And partly about uncertainty about what to do with baby (half of teen pregnancies now don’t go ahead……) • Ethnic communities can be late coming forward • Most agree with the statistics, that it is some Asian, Black African and other migrant • Mix of poor understanding of the process, language and cultural difficulties, and different framework of expectations from their country of origin (or their families) • Travellers seen as late, and a difficult target to reach • Some report they only come later on, when a financial incentive to book • Some mention of drug and alcohol abusers, and those in very deprived areas being hard to reach • A few had had experience of successful outreach programmes

41. There is less consensus about process issues • Some GP’s and many midwives very supportive of promotion of direct to midwife channels • Some GP’s were actively hostile to this – concerned about loss of control and patient relationship • GP’s saw their processes as efficient and useful • Midwives often reported that the GP visit can result in delays we can triage them, identify whether they need confirmation, if there are problems, and hopefully pass them on to midwife service don’t usually test again, but we do listen, boost confidence they are left in limbo for 2 – 4 weeks – can waste time they don’t automatically get passed on but they think they are

42. Both groups agree the system could be streamlined to everyone’s benefit • Many midwives reported encountering different practices by surgery, even by doctor within surgery • Some doctors actively like pregnancy meetings, while others feel it wastes their and patients time they don’t have a common system, or anything automated, so we can’t either – we just have to fit around it some are great, really on the ball, others are known to just lose mums to be honest it is nice, time when we are not dealing with illness, can offer some good advice I am happy to be asked, but we are busy, we just point them to the midwife so long as they are happy with pregnancy

43. Some commonly recognised anomalies • Fertility clinics can leave pregnant women in limbo • Once pregnancy confirmed, they are off their books, but not automatically booked anywhere else (though the women expect to be passed on) • Pregnancy emerging during illness, hospitalisation, can result in patient believing they are known to system, but being lost • Referral to counselling and deciding not to have termination again can leave the patient lost in limbo part of the problem is there are no clear automatic procedures, everyone thinks it is in the system but is just isn’t – and the woman who has just been told she is pregnant is in shock no matter what – she doesn’t take in the bit about you have to go and make an appointment - GP

44. Policy and scan provision seen as key • Some interviews in areas where Neucal Fold universally available • This was seen as powerful reason for pushing early access • Other areas expecting it, or believed it would only be available privately • In these places, less interest in promoting early scan • Most highly supportive of promoting scan as reason why (even if it could bring bad news) • Some sense that community midwifery under-resourced and therefore more early access could stretch things further • All highly supportive of early access, some concern about resource delivery (or management priority)

45. Some materials examined

46. Very positive reaction by medics to the local good practice material • Hackney wheel widely admired – seen as an excellent way of getting information over at a simple and non-patronising level • Also as an opportunity to start a conversation if required • Humber leaflet liked – very user focused • Some GP’s unhappy that it pushes toward the midwife so strongly • However, body copy liked – stresses importance of early booking • Birmingham web material again liked – seen as engaging with and taking a younger audience seriously • Again, single point of contact liked • Some frustration that no material like this available locally (or indeed no thought about providing it)

47. Media campaigns and test leaflets liked • Many would love to see a mainstream campaign to stress benefits of early access • Some suggestions that it might come better as PR – story line in East Enders • Also that it could be delivered via local community leaders (in minority communities) • The notion of a next step leaflet in pregnancy tests is widely supported and seen as elegant solution • Should point to freefone, website etc, and also to local surgery • Should offer GP and midwife as routes • Midwife if you are healthy, happy and sure • GP if you are not sure, want advice or reassurance

48. The GP’s Perspective • G P’s often identifies themselves as first port of call • Not unhappy about this, but aware have little to offer for most mothers to be • So far, no evidence of, or support for, GP referral • Preference to pass patient back to main reception for dealing direct with midwife • Some support for close working with midwife team especially in problem neighbourhoods • “in Edinburgh we had to get out into community much more, pull the women in – here they are much more pro-active” GP High Area

49. The Midwife’s Perspective • Feel that barriers largely down to type of woman rather than systemic • However, feel they have to rely on referral via GP rather than direct appointments • Some support for this • “we have to spend an hour with them – not good use of time too early on or if they decide to end pregnancy” • However strong support for early ( pre 12 week) first appointment – mainly to support pre 13 week scan • Also to start support for healthy pregnancy early

50. Key themes for toolkit development