Stillbirth public health message testing Representing The Focus Group Carol McCloskey Sarah Mowl Gemma Stokes- Podengo

Research Purpose  Exploration – How aware are they? How important is it to raise awareness?  Message testing – how they are received?  Creative concepts/channels of delivery – how do they want messages delivered?

Order of play  Recruitment & methodology  Women’s feedback  Midwife feedback  Key recommendations

Recruitment process Step 1 – initial call to action (via website/database/Facebook/Twitter/Forums/local recruiters) Step 2 - screening Step 3 – information about the project Step 4 – booking and rescreen Step 5 – attendance and consent

Participants  40 women Groups in Glasgow, Belfast, Cardiff, Bournemouth, London (2), Manchester  13 Midwives Groups in London and Glasgow

Current knowledge = Low Discussion with midwives = low (Many see different midwives or don’t have a relationship with an individual midwife) Definition = unsure Risks = Unsure Women ‘ It’s a taboo area, it just happens, not much information out there.’

Did you know? 11 babies stillborn 1 in 200 pregnancies ends in stillbirth Stillbirth 15 times more common than cot death 4000 stillbirths compared with 250 cot deaths 1 in 750 pregnancies result in Down’s Syndrome ‘Puts the fear into me a bit’ 11 out of how many? Cot death a very strong comparison – ‘less worried about cot death now.’ Down syndrome NOT relevant or understood Want to know more – not telling anything positive – not as stand alone. How many at what stage? What reasons? What can be done?

Risk Factors Smoking – limiting oxygen Alcohol – baby drinks what you drink Flu Virus Flu virus – no idea – very useful information Smoking – Liked the limiting oxygen – brought message home Alcohol – But unclear - baby drinks what you drink – not factual and confusing messages Smoking/Drinking – Old messages, know we shouldn’t do this – unless you can say new research has shown. Add drugs

Associated Risk Being very overweight (BMI 30+) Over 35 Ethnic minority Pre existing conditions Develop complications BMI not believed Ethnic group – what does this mean? If you had a condition you would already be having monitoring Complications – what does this mean? Doesn’t everyone have pregnancy complications? ‘Don’t think this helps, you can’t do anything.’ ‘The midwife should be looking out for any signs.’ ‘Seems old fashioned statements.’

General Anyone – 1/3 at term Know some but not all – not all can be prevented PREVENTION – bad word Not about prevention but about reducing risks – can’t prevent.. Not useful as a stand alone statement – too many questions – what can be prevented? What can we do to ‘prevent’? What does 1 in 3 mean – in terms of numbers? Good alongside the risk messages Could be useful after the event – reassuring that you haven’t done anything wrong

Liked this – engaging, positive and subtle Liked that there was no direct mention of stillbirth First bit of information shown as a leaflet and helped engage the groups ‘ Even before I open it I like the language, it doesn’t frighten me.’ Liked the fact it says ‘safer’ pregnancy and not how to have a ‘healthy’ pregnancy..it’s a stronger message.’

Healthy messages – yes know this but better received in this format Making an appointment – already done this by the time reading this Any changes – need to be clearer its about pregnancy changes Include GP – not all would go to midwife Fits well with the messages as a whole – start to understand why this is important Key message – to contact midwife (or GP or hospital) immediately, not to wait Women need to be reassured they are not being a nuisance Include – gut feeling - instinct

Growth NO – not for us – for midwives to worry about Movement A very good message but needs to be clearer Often no regular pattern - is it also about no movement at all? Different during different stages More explanation for 1 st time mums – no idea Just for women at a certain stage – 20+ weeks ‘As you are growing, over the coming months you will grow use to the feel of your baby and if you have any concerns about the changes in movement ….

Imagery About communication Positive No emotion Subtle This isn’t about shocking people but providing education and positive messaging Nothing bad has happened yet – not about the support ‘Do we need any at all?’

Acceptable imagery

Mixed reaction

No!

Raising awareness? Yes but subtle messages and some delivered via the midwife Tell us early – booking in stage Focus on what we can do - NOT IF WE CAN’T DO ANYTHING ABOUT IT If you are raising awareness then you should raise awareness of support ‘ offer something positive, what is stillbirth? Or did you know about stillbirth? And then have information that can help you reduce your risk and in the unlikely event that you were to have one – there is support available.’ ‘Wording should be positive and taking out things you can’t change and let the midwife do that assessment.’

Current knowledge = Medium Discussion with Mums = low Definition = Clear Risks = Clear Midwives ‘ If there is an associated risk – then yes I will raise it.’ ‘We focus on the happy side, I don’t want to focus on this.’

Raising awareness? Big concern – raising awareness about something they as midwives can’t do anything about – so needs to be individually focused But feel they should be more aware and add the messages to current health messages

Did you know? 11 babies stillborn 1 in 200 pregnancies ends in stillbirth Stillbirth 15 times more common than cot death 4000 stillbirths compared with 250 cot deaths 1 in 750 pregnancies result in Down’s Syndrome ‘I wouldn’t want to give that fact unless I can back it up with something that can reduce risk.’ Good to know – emphases that we need to tell women about this Cot death – we can prevent this – but not stillbirth Makes cot death seem less of a worry

Risk Factors Smoking – limiting oxygen Alcohol – baby drinks what you drink Flu Virus Good preventative messages Softly done – like the limiting oxygen and baby drinks what you drink Good along side other messages Could add drugs Well received by midwives as a reminder

Associated Risk Being very overweight (BMI 30+) Over 35 Ethnic minority Pre existing conditions Develop complications Very stereotypical – concern of stigmatising around obesity Should be more about accessing the risk and changing behaviour – not about this Could be used as a check list for us – not as general information for the mums Suggested tool to rate risk ‘if you are aware of the combined risks then you can refer someone sooner for help.’

General Anyone – 1/3 at term Know some but not all – not all can be prevented PREVENTION – bad word Not about prevention but about reducing risks – can’t prevent.. Not useful as a stand alone statement – if there is no reason then how can you prevent it? Message 1 in 3 at term is very strong, good to emphasise

Key Messages for midwives Liked the safer pregnancy message Reporting changes - need to incorporate the importance of intuition – women know when something feels wrong Focus the concerns on the baby – more inclined to take notice Important to bring home the message that they should contact their midwife immediately if notice changes (or triage or GP) All message emphasis the need to attend all antenatal appointments

Growth NO – not for women to worry about – for us to monitor. Could link this message with attending all appointments Movement A very good message – changing pattern is good – they don’t like counting kicks which is confusing Good to encourage women to contact immediately

Imagery About communication Liked having a midwife in the images to bring home the communication message – and in uniform Should be positive Should not be about bereavement or loss ‘If we are talking on the first appointment you don’t need an attention grabbing picture.’

Acceptable imagery

No!

Resources Useful resources Having a tool to help them assess a woman’s individual risk Posters in the clinic and a leaflet for women Incorporating the stillbirth messages within current discussions

Women Midwives To ensure messages are delivered safely and appropriately General messages Targeted to those still undertaking risky behaviours Recommendations Division of messages

For women For midwives Safer pregnancy message Risk factors – flu, smoking, drinking Movement Some statistics to give context It can happen to anyone message Importance of attending appointments Importance of listening to your body Importance of immediate contact if concerned Ideally a leaflet showing the above given at the booking in or dating scan. Associated Risks – for them to monitor and discuss individually Growth Tool for them to record and access risks Leaflet to hand out Posters on safer pregnancy messages and risk factors for the clinic Check list/tool for midwives to assess risk Recommendations

In Summary Subtle Positive Communication Education Individual Things that can be done Reducing risk Safer pregnancy