Hello everyone! We’re absolutely delighted that we have Petra Boynton here to help us think about our research. Hello Petra, and welcome to our Breastfeeding & Health Care Experiences -Parenting Science Gang!
Petra: Hello everyone! Thanks for asking me along tonight. I’m a Social Psychologist by background and I’ve worked in International Healthcare for the past 25 years. I specialise in research in sex/relationships health (currently pregnancy loss), and I apply that work by teaching organisations, charities and universities how to do research well, and through working as an Agony Aunt.
I run a project called The Research Companion which supports researchers at all levels, across the world – on social media, in training, and through a self-help book for researchers. I live in East Sussex and I have two sons aged 10 and 6. Neither are in bed because they know I’m doing this chat – so I’ll be paying tomorrow when we’re shopping for school shoes!
What we’ll be doing tonight is what I usually get people to do when thinking about a project. Ideally we do this at the start, normally shut in a hot and sticky room with lots of biscuits and coffee 🙂
However it’s quite common to find ourselves doing it when a project’s underway to refocus ourselves.
Tonight we’ll be thinking about what you’d like to do, what possible opportunities and barriers this presents, and the practical things you’ll want to focus on.
Petra: It would really help me if you could tell me what kinds of research ideas you’ve had already please. We can return to these at the end of this chat and hopefully things will be clearer. (Also, if there are particular things you were hoping to cover tonight, please let me know so I can come back to them during our conversation).
Rebecca Brueton (PSG coordinator): The original idea that instigated the ‘Breastfeeding & Health Care Experiences’ PSG group was to do something positive with the many stories of non-evidence based / bad advice given to mothers, possibly with the hundreds of posts on this topic that are posted in places like BFing support groups on Facebook (like BOBAB and UKBAPS)
But there have been lots of other ideas since!
PSG B: Heartbreakingly by people like the old me (HVS)
PSG C: and why I gave up halfway through my HV training 🙁 I had an awful experience with my mentor!
PSG A: Quite a few things have been discussed in the group and we came up with a top 3
Petra: Top 3 is good 🙂
I’m going to be taking you back before question ideas and forward to the end of the project so listing them all would be useful and we can come back to unpacking them later – this will make zero sense now but should be clearer by the end of this chat 🙂
Sophia Collins (PSG project director): The top three topics were
- HCP interactions in the early days of bf.
- HCP interactions relating to longer term bfing
- And HCP interactions relating to BF and sleep.
But I don’t know if these are specific enough to be research ideas?
Petra: The great thing about research is it’s fine to begin with general ideas – in fact starting with a specific question is both highly unusual and often very restrictive! So having general ideas of what you’d like to look at is a good starting point as you can think about what you’d like to happen with your work (something we’ll discuss in more depth shortly), and also focus into more specific questions and methods – which will be determined by practical things like your time, skills, support, experience, and infrastructure. All of these are good!
PSG C: I thought this too but thought it would develop more clearly – if that makes sense…
Petra: PSG C: it rarely does – when people are passionate about topics, particularly with multiple experiences as you all have, there are lots of potential avenues and all are valid and interesting. The challenge is to think about which area feels most important/timely.
PSG A: The unique ‘resource’ that we have is lots of people who are either currently breastfeeding or who have been breastfeeding in the past.
Rebecca Brueton: Yes, through our wider BFing communities we have connections with thousands of BFing mothers.
PSG D: One of the things I found frustrating about formulating these questions are how huge they are. If we ad breastfeeding and medication in there we’ve basically covered what will be most mothers’ experience of interactions with HCPs about bf over their whole feeding journey.
PSG C: But would that be around language used or not following guidelines, or both??!!
PSG D: Either, both, both with sprinkles? Any of the above!
PSG A: I wonder if something we could provide is examples of the breadth of ‘normal breastfeeding journeys’.
There is no one size fits all, and that might be helpful for both new mums and hcps to understand.
PSG D: That could be super interesting. Often HCP’s views of BF are very segmented.
Rebecca Brueton: Another idea that’s been floated is to do research that the GP Infant Feeding Network can use. They’re a direct route to GPs and other HCPs as they provide BFing resources and support for them. They’re very keen on the idea of the “patient voice”.
This is a great opportunity in my opinion.
Petra: That’s useful – and introducing a new angle as well. You’ve got your own experiences and ideas. And you’ll presumably have an audience (or audiences) you’ll want to reach (we’ll come onto them in a moment). But you also have potential partners – be that York Uni Sophia Collins: mentioned earlier, or the GP Infant Feeding Network. Having partners can be really useful, but also introduces potential barriers (you’ll be doing work for someone else rather than just yourselves). Which, in turn, can affect what questions you ask and how you measure them.
PSG C: This is really interesting to me!!and GPIFN are great and have access to loads of resources/contacts
Rebecca Brueton: GPIFN didn’t want to tell us what to do specifically – more that if we do something that’s related to BFing and the patient voice, they’re sure they can put it to good use.
They’re interested in general terms, about what BFing mother’s issues are.
PSG B: local authorities who are now responsible for commissioning public health services, which governs HV services now, also need to hear patient/community voice, as do the service providers themselves (largely still NHS trusts)
Rebecca Brueton: I’m guessing, but I suspect the thing is, the BFing advocate GPs out there know very well what the issues are but it would be very useful for less well informed GPs and HCPs to hear it directly from mothers
PSG C: I think thats really important it has to be parents thoughts – real thoughts if that makes sense, sometimes I think the problem with being involved in a different way (maybe to do with public health, or being someway already invested, if that makes sense) is you run the risk of losing sight of the reality for the parents that don’t know how the system – so to speak – works…
PSG E: I also think this would be a great opportunity. By listening to where it all went right/wrong from the mothers perspective there may be patterns emerge that can then be used to target resources
Sophia Collins: We also have a lot of HCPs in the group. Lots of them only realised when bfing their own children how little they knew about bfing. That is also a journey and a voice that I think is really interesting. Everyone finds it easier to listen to people ‘a bit like them’. So maybe those HCP stories are a useful way of connecting with other HCPs.
Petra: There’s something particularly powerful about having multiple experiences – if researchers were looking for participants that could have different takes on their lived experiences you would all be ideal! So there’s something to celebrate and make use of here about your unique skills/insights as a group.
PSG C: I did an infant feeding board at work – and have since had many colleagues come up to me and reflect on their own feeding experiences – thats why I was really interested in research surrounding how HCPs own experiences shaped the advice they give – but that question wasn’t picked lol, so its not what parents are as interested in – understandably!!
Sophia Collins: I guess as a topic alone, it wasn’t the highest priority for the group. But it can still be included in the stories/voices we include. It’s a really interesting subset of patient experiences. I think it’s important we don’t *exclude* HCPs, as if they aren’t patients too!
PSG D: I don’t think we’ve ever discussed what we’d like to see in terms of an outcome.
Petra: Good point! And we’ll be coming onto that shortly 😉
PSG A: For each question, Sophia Collins asked what we would like to be different about the world in 5 years time.
PSG A: For the sleep question, there were a lot of points raised about co-sleeping (and people hiding from hcps that they do it!).
PSG D: I meant more what we’d concretely like to produce e.g. something that would change a guideline, or be a handy pocket guide for HCP for example.
PSG D: A lot of the 5 year questions were more people BFing or HCPs stopping certain behaviours.
PSG F: I’m interested is anything that can provide results that can help increase bf rates in the long term.
Petra: As well as having questions you want to explore, having end goals is also useful – you can try this exercise later if you like. Get a piece of paper and write your possible question on it in the left hand side.
On the far right, note what you’d like to happen (e.g increase bf rates) then you track back and forth thinking of all the things you’d need to do to make these two things match. You may find they map easily, or it might be the question and outcome don’t match and you’ll need to tweak, or the outcome might be overly ambitious although the question is good. It’s good to spend time thinking about these possibilities now (it might not feel like ‘doing research’, but this stuff is the most important part of any study).
PSG B: The impact of our research can, and should, be planned and followed up carefully, particularly re: influencing government (local or national)
Petra: That’s a really good point – all too often research is done but there’s no follow up or sustainability. Wanting to influence politically is another positive aim. The challenge you have is to consider how to focus your study question to an achievable outcome that can be sustained and measured (noting how that would happen, and by whom) alongside wider influence.
We’ll think about this tonight (picking up on the work you’ve already done), and will return to it at our next chat where we’ll be focusing in on a specific study and how you’ll run it.
Petra: You’ve really helpfully explained some of the things you’ve already considered doing.
You’ve already touched on this in the previous thread. But what are the most important things you want to get from doing your research?
Don’t limit yourself here, you can be as bold, or as cautious, as you like.
PSG G: In my head – and this is probably way too ambitious and big – but to help put training in place to stop all the bad advice, even if that’s HCP knowing where to signpost to rather than giving out poor advice.
PSG B: That’s in a way what baby friendly accreditation aspires to do but gps are not currently signed up to it (it costs ££) and staff who have done training can still so easily go off piste. I think there’s a real reluctance to signpost to third sector agencies
PSG H: I’m leading on a BFI accreditation at the moment. As part of that prior to me starting there were some places on the GP online UNICEF training but the take up wasn’t good. There’s more interest in some things that tie in with GPIFN however everyone is stretched.
PSG A: Do you mean achieve personally by doing it, or achieve as a change in the world?
Petra: either or both is good 😉
PSG C: For me personally – its very broad, Its about HCPs not stopping BFing journeys whether that be through poor – misinformation or by giving bad advice based on opinion or outdated research
PSG I: I recently put together an action research proposal to involve women in redesigning breastfeeding support, based on their experiences of the current system, but i am finding it difficult to source funding. Eg Big Lottery advised that this is Health Services responsibility. What do you think?
PSG C: I think this is a social responsibility but I very much doubt would be funded by social care – which now encompasses most public/child and community health services
Petra: Getting funding is tough, so it’s about putting in to multiple funders – Wellcome small grants might be one, Leverhulme’s another. Or local councils or CCGs may fund evaluations of existing services you could piggyback onto. A lot of funders will ask you has anyone already tried to redesign bf services so if not already done a systematic review of literature or a mapping activity of existing services/audit might be more likely to get funded.
PSG C: Also I was on a personal level looking into nursing benevolent charities – some providing funding for innovation and I was thinking about looking into that at a local level where I work.
PSG B: So many existing BF services currently funded by the public health budget are under threat of being axed to *save* £ despite that being such a shortsighted view a we all know the mega bucks that are saved by increasing BF rates- it would be great to help demonstrate their worth if at all possible
PSG C: the local bf service where I work is run by Barnados 🙁
PSG A: The overall one is to see breastfeeding increase, because there is so much evidence that it is good for babies. And the people who should be helping this happen sometimes seem to be the biggest blockage.
PSG A: Personally, I just stopped interacting with health visitors when they starting spouting non-sense, but other people would have followed it and used a bottle.
Neither outcome is good really. Had I needed support for something else, I don’t think I would have felt I could return to the health visitor after turning her away.
PSG H: I’m sorry you had that experience I hope you had an opportunity to feedback to them; some are really amazing/ good too. I work with some great colleagues ( I am not a HV disclaimer )
Rebecca Brueton: In very general terms, I thought the idea of taking lots of bad BFing / health care experiences and turning them into something positive to help train HCPs is a really positive thing to do.
Hospitals have complaints procedures, but that’s not the same as really listening to the patients e.g. through their stories on social media, perhaps.
PSG C: I think our research would be really really useful to loads of third sector organisations not just GPIFN but WBTi and Unicef
Rebecca Brueton: WBTi keen to get involved through a Q&A as well by the way!
PSG D: I think this would be amazing.
PSG H: our PH team did a set of client and HCP interviews to find out more about what happens , the barriers to BF and lots more. They haven’t finished the exercise yet and I haven’t read their report but it was an interesting approach.
Rebecca Brueton: The All Party Parliamentary Group on Infant Feeding have agreed we can present our research findings. So something that could inspire / be of use to that amazing group of people would be great. (Although I suspect whatever we do, as long as it’s interesting – which it will be! – will be appreciated by the infant feeding APPG)
PSG A: I’d like to see more knowledge (and acceptance) of long term breastfeeding, so that no-one hears ridiculous ‘sexually related’ comments with relation to breastfeeding (and absolutely never from a HCP, which seems to be reported in many comment boards).
PSG E: I would love to see an increase in breastfeeding rates and mothers that want to breastfeed being able to feed their babies and reach their goals without a struggle
PSG D: I would like to see pre-reg training meeting wbti standards and compulsory refresher for those currently registered before they can revalidate.
PSG C: I agree with this!
PSG D: So in a way proving that things are bad on the ground would be the driver for change.
PSG B: I would like to see the infant feeding survey reinstated! You did say be bold! That survey captured so much valuable data about what parents actually do with their babies/childrens feeding and that precious intelligence has gone so we can no longer minitor so readily the impact of BFI etc
PSG C: I cant remember exactly what it covered, am I right in thinking the only information we have now is the 6-8 week bf rates? the ones on chimat??
PSG D: Or (inspired by other countries) a box to tick at the 9 month and 2 year checks with breastfeeding currently yes/no and number of weeks breastfed that’s then collated.
PSG B: Yeah it’s quite poor data now not sure exactly but only BF/AF status nothing else
PSG J: Yeah initiation rates and 6-8 weeks
PSG K: I read recently that something (would it be the one year old HV check?) just asks for date of last breastfeed…implying you stopped already…
PSG J: I think it might
Petra: These are all really useful. I’m noting as you’re writing all the different themes that run across what you’re wanting to do/are interested in. Right now all of us are posting, so once this chat is over I’d suggest you spend some time over the weekend (if you’re able) to read back over everything so you’ve got more time to absorb this. I’ll give you some pointers on how to do that later.
Rebecca Brueton: I’d like HCPs to be aware of all the ways their advice can end or impede BFing relationships without them realising it, and why that matters.
PSG F: So it seems that people get not the best advice from gps lets say, and perhaps they need to be educated in some way. But what is the best way to share the information? Do they have time? Will they choose to learn about bf? Is it better to just give them somewhere to refer people? Do we need to go back to the universities and get adequate bf education on the curriculum? In my experience not all midwives are pro breastfeeding and greater knowledge doesn’t make them want to help people bf.
Rebecca Brueton: If we want to influence curriculum / training, I’d imagine we’re more likely to be able to do that by partnering with people already working towards that aim. Who that we’ve not already mentioned is this kind of sphere?
PSG C: Unicef
PSG H: It should be about the client not what they feel about feeding methods
PSG C: They need access to resources at least – this is what my boss has done for me at my work – set up a file online for infant feeding resources that all of my colleagues can access – so if they don’t know they have somewhere they can look 🙂
Petra: Partnering up is great – one idea (if you’ve not already done it) is to see what potential partner organisations have already done or are doing? You might find they’re already trying stuff you’d like to know the answers to (so saves you the time/effort and means you can focus on something else). And it helps with collaborative working – you don’t want to be like me and approach a charity telling them they really *ought* to be addressing something – only to find it had been their core work plan for the past decade :-0
PSG F: Last I looked there was no clear evidence that doing Baby Friendly Initiative (BFI) in the UK led to greater bf rates so I’d like to see some if anyone has done any research on that.
PSG H: really? I’m surprised you say that. What do you base that observation on?
PSG F: Trying to find clear evidence. I couldn’t find much in the uk. There was some for the usa but the BFI is different there so not comparable.
PSG E: I would find it really interesting to know where things are going wrong from the mothers’ perspective ie why the rate is so low. What is the biggest factor – e.g. pushing formula unecessarily, not identifying tongue ties, bad latch causing reflux etc or something else. I really don’t think the reasons for the low rate have been properly identified which is why it hasn’t really increased
PSG C: I personally think part of it is something entirely different I think its often to do with perceived convenience, I think we should start by concentrating on mothers that have already chosen to BF by giving them correct support and advice and then I think numbers might naturally uptake as myths are quashed rather than circulated as they are now…if that makes sense!
Sophia Collins: I think that’s exactly right. There’s a mountain to climb in terms of UK bf rates. Removing the barriers places by bad advice from HCPs to mums who are voluntarily trying to bf SHOULD be low-hanging fruit, if that makes sense.
PSG F: Intention to bf is fairly high but drop off in first few days/weeks is high so where exactly are we going wrong? Is expectation wrong or is support in early days not enough/adequate
PSG D: This would fit with our top 3 question on the early days. I also feel if we can get them right, or work our where we’re going wrong, we have a better chance of wider change.
Petra: I’ve got a much clearer sense of who you are, what general areas you would like to focus on, and what you’d hope to see happen as a result of undertaking any research.
Building on that, can you tell me what are the most important things you want to get from doing your research? (Some of you have mentioned influencing parliament or increasing bf, but there might be other goals like getting published or changing policy).
Who do you want to influence/reach – and why?
Some of you have already mentioned this in other threads but I find it really helps to note these issues alongside thinking about potential research topics as they will undoubtedly influence what you end up doing.
PSG L: More awareness of breastfeeding barriers in a bottle / formula centric world, and more empowerment to give and get support from HCPS???
PSG D: Getting published would be a plus in my book – it’s easy to be dismissed if you’re not.
Petra: That’s an interesting point. Who do you think would dismiss you if you weren’t published? And why?
PSG C: doesn’t being published mean your research has been peer reviewed? or semi peer reviewed??
PSG D: HCPs – if it’s published in an academic journal then it’s definitely evidence based. If we wrote a book of interviews and did some analysis then got Pinter&Martin on board it gives mothers voices legitimacy in a way social media can’t.
Petra: it does, but you can have work peer reviewed without it being published (for example getting input from a steering group throughout a study). And there are other ways of getting the work taken seriously – having a clear, focused question that’s based on a thorough review of the literature, that answers something important, has clear outcomes, and is useful 😉
PSG D: As for why because people don’t like being challenged or told they aren’t doing as well as they could. It’s a sort of ad hominem attack.
Petra: that’s a good point. Although we all know HCPs aren’t doing a good job now – in some cases they’re doing a very bad job. Given how much is published in academic journals, you’d assume they’d be doing a fabulous job? 😉 Being published doesn’t necessarily equate to evidence based, and HCPs (as you may know personally or professionally) aren’t always evidence based. So your challenge – and it’s an exciting one – is to think if you’re wanting to influence HCPs or change their behaviour how best to reach them? Publishing in a journal is one option, but it’s not the only one. Might other ways be more effective?
PSG D: IMO there’s a communication mismatch between journals and people on the ground. It’s not that science in the journals is irrelevant but it’s not reaching HCP in the format they need. They need a 3 point summary of why and how this research impacts their practice. Then if they’re interested they can wade through the whole paper. But the paper is the irrefutable constant.
Petra: this is really important! You’re speaking their language.
It’s interesting there’s so much pressure to publish in peer reviewed journals, as if this makes research ‘better’ or ‘more real’. It has a place, yes, but it isn’t always the best place – or the first port of call in a project. In your research it might be, but it might not. Your idea, for example, of this summary that HCPs want – and picking up on your point of them not feeling it’s an ad hom attack – sounds far more likely to be effective than a journal article I suspect (from bitter experience) most will not read.
I’ll give you an example, I ran a project a few years ago asking partners about pregnancy loss. They told us their stories and we made an information booklet, films, cartoons and testimonies for a charity – all of which was shared in a national media campaign. It got endorsement from several public health organisations, and led onto me writing a self help book and now a global project on improving miscarriage care. There is data to write a paper, and I have retrospective ethics to write it. But I’ve not submitted it yet because all this other work has brought change that I know the paper won’t.
If you’re an academic being evaluated on publication rates, peer reviewed papers make sense. If you’re not, then other options may be much more useful to you and your target audience. No pressure to pick now, but it’s lovely to know what your possibilities are.
PSG D: It’s interesting that the automatic aussmption is publish = journal 😉 I count an information booklet as published information even if ‘only’ published by a charity, and a self help book definitely counts.
I feel that when mothers go to HCPs with a printed leaflet or some kind of hard copy it’s taken more seriously than a webpage saying the same thing.
Petra: that makes a lot of sense. So one of the things you could all be thinking about in terms of outputs is what formats would work – and what audiences are you reaching. Although you’ve primarily talked about HCPs, if you want breastfeeders to get information/have backup then you may want more than one format. Things like websites, downloadable reports, apps, anything you can show on a phone, videos, infographics – all of these things are possible. Being creative is a powerful thing – you might reach more people with a striking image or a cartoon 😉
Rebecca Brueton: That’s really good food for thought! How best to get the data to the people we want to influence?
My background is marketing, this feels a lot like marketing, selling an idea not a product.
If we want our data to reach a certain group of people, well, what’s the best way to reach that group? Petra, you’re saying it might not be a journal in the first instance. Interesting! …
The formula companies, for example, are influencing HCPs by other means aren’t they. Not that I’m suggesting we run a bunch of ads to publicise our data! But if our aim is to influence, then it’s worth spending some time on thinking what’s the most effective route to influencing people.
I’ll do a little research into social marketing techniques.
Petra: Absolutely. Because we’re encouraged to see ‘evidence’ and ‘published’ = ‘peer reviewed journals’ we don’t necessarily consider wider ways to disseminate messages. And within this area there are loads of fantastic examples you could copy. Or organisations you might partner up with (for example here’s what Medical Aid Films have done for breastfeeding – Understanding breastfeeding – Medical Aid Films
PSG D: Breastfeeding has a marketing problem. There are people kicking back and trends which are normalizing it but we’re up against decades of ‘scientific’ marketing of formula to parents and HCPs and societal marketing of breasts as a product in themselves. I’d be really interested in anything that comes out from your social marketing techniques Rebecca Brueton.
Breastfeeders can very often get the information but they’re then undermined by the more effective marketing of HCPs as experts, or formula, or boobs.
PSG E: Yes this ^^ there was loads of information I now know which I wished I could have found in the early days.
PSG C: Very good point, formula companies have the money to sponsor everything – training, meetings, one to one teaching, adverts in journals, pens! pens FFS, every HCP needs a black pen!
Petra: so thinking about wanting information – where did you go to get it? Perhaps you didn’t know so didn’t look. Or maybe you did look but couldn’t find what you needed – if you can identify places you could share/advertise your findings that could be invaluable.
PSG D: Now I’m on a roll… another huge marketing issue is the mistrust some HCP have of mother to mother support organisations. Now I totally recognise that some Facebook groups in particular are horrible and dangerous places, and there is sometimes an over-reaction to giving formula to the extent of babies who do actual need it because breastfeeding is not effective and supply has been impacted (and no it won’t be solved by akin to skin) not getting complementary feeds but that is not on a par with a recognised breastfeeding support organisation
Sophia Collins: I think if publishing in peer-reviewed journals would solve everything, then we wouldn’t need to be having this conversation. But we know perfectly well that some GPs are telling people that “there’s no benefit to bf past six months”, etc, which is clearly at odds with published research.
PSG E: I was a first time mum and I had a tongue tie nightmare and looked everywhere for the information we needed we got books off amazon (typed in breastfeeding and went with ones with ok reviews). We had a good leaflet from the hospital with different latches but it wasn’t enough. I google latching videos on you tube but they all just seemed to pop on. I have since found sources that would have really helped me then like Jack Newman’s videos and also info on different blogs that I just come across. This kind of info in one place like the ISIS website for infant sleep would be fantastic.
PSG E: Although formula companies use very blatant expensive ways to advertise. I think they also use many more subtle ways eg I see so many blogs of mothers who have bad breastfeeding experience, switch to formula and are not going to feel guilty for it and receive so much support as many mothers can emphasise. So I think what I am trying to say is publishing stories and experiences or some of the other ways Petra mentioned that people can connect/identify with (eg my baby does these things it’s good to know its normal /I didn’t know it wasn’t supposed to be painful maybe I need help with my latch like that woman) can reach a wider base than facts and figures or a write up of evidence.
PSG C: Do you think that individuals who have had both breast and formula feeding experience are more likely to be listened to? I find that as an only breastfeeding mum – if I post anything I instantly get defensive responses insinuating I don’t understand (despite having an awful start with feeding) I had an absolutely horrific experience on an ex colleagues facebook recently – with many defensive responses from other ex colleagues (all HCPs). It made me incredibly sad that the evidence was irrelevant in their eyes…
PSG M: PSG C: I’d like to say yes, but my experience as someone who did both (due to me being ill), it seems like it gets used as a reason to dismiss me even more, as I did neither “properly”
PSG C: 🙁 that’s ridiculous!
PSG M: It’s such an emotive subject, people will always find a way to dismiss people who haven’t done/said exactly the same as them. It’s why the research is so important, so that those whose voices they listen to (e.g. HCPs )
PSG C: Personally I would like to influence professional colleges and stop them accepting formula company sponsorship – but having the RCM/RCN on board etc
PSG C: and then pre-registration courses
PSG B: Yes yes yes definitely!!!!
PSG L: That’ll be Amaze-boobs!
PSG B: Most important thing to me is to keep BF on the health agenda – it was getting somewhere prior to the coalition govt as there was a national BF network funded by govt. this was immediately discontinued and so began what I see as a regressive policy approach to such an important an public health topic peole power seems to be the best way forward Atm!!
Sophia Collins: I think persuading whoever we would need to persuade, that GPs should get more training on bf would be a massive win. HVs seem to vary in their helpfulness, but at least they’re is training available for HVs on bf. But GPs are often the first port of call for many patients (and possibly seen by patients as ‘outranking’ the HV or midwife), and yet they get one lecture on lactation and bf in their whole training.
PSG N: Improving bf knowledge/awareness for HCP’s? Especially HV, GP and paediatricians.
PSG D: Changes to pre-registration courses (and revalidation) would be in my top goals. Even are 18/19/20 people have very set ideas on BF and they’re not getting the facts to challenge that early enough.
PSG C: Also my work agenda is to get ALL HCPs that come into contact with children and mothers to know something about lactation and infant feeding – not just GPs/HVs/Maternity but particularly in secondary emergency/urgent care settings. I have heard so many anecdotes about mums being told to stop breastfeeding and just give oral rehydration solution – for example, Ive even heard someone was told to stop by a nurse who told them that their sick child shouldn’t be having “dairy”!!astounding!
PSG L: Or at least confidently signpost to an infant feeding lead.
PSG N: Yes professionals being able to confidently say I don’t have knowledge let me refer to/let me refer you to xyz
PSG N: societal norms have swayed so much towards formula that there isn’t a general level of knowledge around breastfeeding
PSG A: That on every shift there is someone in the hospital who a doctor could call on, if they have any questions / doubts / queries about breastfeeding – so they can have instant answers / support.
PSG A: I’m not sure how realistic it is to want every doctor to know everything – but they should have access to support.
PSG L: Totally; signposting is key!
PSG C: yes or on call at least! and that infant feeding coordinators should cover and provide teaching to all departments (where they are employed!)
Sophia Collins: I know what you are saying. And gps def can’t know everything! But I worry that at the moment a lot of them don’t know that they don’t know. So they don’t know they should be referring elsewhere, etc.
But you are maybe right that it’s unfeasible to have them all have bf training.
PSG A: So perhaps it would need to be run alongside awareness raising campaigns for GPs / hospital doctors.
PSG L: Sophia that’s the issue really – they don’t know what they don’t know, and the voice of industry determined to undermine breastfeeding is louder in their ears, than the needs of breastfeeding dyads.
PSG A: It would be amazing to see even 30 mins of training put into their regular (annual?) ‘mandatory’ training, so they began to see what they don’t understand, and then support offered to them at point of need.
PSG I: I would love to see a wrap around service for mums who want to bf –
Provided by staff who are passionate as well as knowledgeable about breastfeeding. Similar to the Dutch system of postnatal support of 8hrs a day for up to 8 days or longer if mum had caesarean. A sort of mothering the mother service, or like a lie in month that is still a feature of some cultures that support the breastfeeding mother.
PSG A: That would be amazing, but expensive.
PSG L: What’s the 8 hours a day about, please?
PSG I: It’s called Kraamzorg
PSG B: Peer support schemes try to do this but have proved to be an administrative nightmare in my experience.
PSG L: Why? If you don’t mind me asking.
PSG B: The peers were moved from one organisation to another with DBS checks and ID arrangements seemng to dominate their agenda
PSG I: Expensive maybe, but good value if mum is fully supported to give baby a good start. Health economics might be able to justify this cost?
PSG I: Lizzie were the peer supporters paid or were they volunteers?
PSG F: Some clear interventions which are easily recreated across the uk evidenced to help increase bf rates/familes reach their bf goals etc.
PSG C: actually this reminds me in the APPG minutes I just read before this session started – they discussed the results of financially incentivising breastfeeding and about other local authorities taking
Rebecca Brueton: That study though – they didn’t just get money, they also attended a BFing group. Was it the cash or the group that helped?
PSG C: I think they got both cash and access to support, and it did help it would seem
PSG O: Mary Renfrew and her team did detailed breakdowns of the variables, pretty sure there was one showing the money itself had an increase in duration.
PSG F: But is it realistic though that local authorities will spend the money. I wonder if they costed the impact. For every £5 spent on bf there is an overall £10 savings for the nhs etc.
PSG E: I agree that general breastfeeding knowledge (and problems) is low in society. Depending on what we research we do I would want to get breastfeeding knowledge out to mothers to empower them to make it easier for them to spot themselves when things weren’t right and what they can do/who would be best to talk to.
PSG L: Perhaps a PSG group invited to HCP conferences to amplify breastfeeders voices in relation to HCP interactions with them.
PSG D: Yes!
PSG C: that is such a great idea!
Sophia Collins: Glad to see you are all on board with my secret plan for PSG to take over the world:-)
PSG P Oh my gosh so we get t-shirts if we do?
Actually… Can we just print some t-shirts?
Sophia Collins: Yes! Although I feel it might take us a long time to agree the colour and design…
Petra: Being a very geeky person I could happily talk about research methods all night. Fortunately for you I will not be doing this 😉 I’ve got a couple more questions to ask of you and then I’ll wrap up with some suggestions for taking this further.
I’m really excited about all the energy and insights you’re bringing to this – and whatever you end up doing you can be confident it’s going to be interesting and useful!
Thinking about yourselves let’s take a moment to think about what your role in this potential project. You’ll be doing research, but you’re also parents, and some of you have past or current roles in health, including in some cases focusing on breastfeeding. Which identities will you draw on for this work?
This isn’t a trick question, it’s appropriate and very useful to have personal experience(s) guiding your work. But it will influence what you want to ask and how you go about it. Can you reflect for a moment about your place within this work?
PSG L: I’d like to be part of collecting breastfeeders’ HCPs experiences, to tease out common themes in relation to the final research question.
Petra: I like that idea – if you were doing that would you be operating as a parent, as a researcher, or in another professional capacity (or all the above)? How would someone you wanted to research see you?
PSG L: As a breastfeeder with mixed experience with HCPS, one that almost cost me my first breastfeeding journey.
Petra: that’s lovely – too often we take for granted really vital insights we have. You might have a researcher working in this area who’s got an interest in it, but that isn’t quite the same as the interest + lived experiences you have.
Rebecca Brueton: I’m a BFing mother and part of the project team. My role is to facilitate.
I enjoyed the brief discussion we had about thinking how best to get our ideas across and maybe I can use some of my previous marketing experience to help support that.
PSG L: Ethical marketing!
PSG A: I’d be participating as a mum and as a ‘communications’ person, aiming to find ways to communicate clearly what we find out.
Petra: see my comment to Rebecca Brueton above – but you’re spot on with this – you need great comms to make this work. For some studies it doesn’t matter as they don’t have much in the way of social importance. But this one does – and we know it’s also an issue that can cause a lot of distress for new parents (and babies). It’s a valuable area to be working on.
PSG C: I know my participation is biased by HCP experiences with colleagues, however I am still a breastfeeding mother. Im not sure tbh I think I can disseminate information directly or at least find out where my colleagues get their info from :-/
Petra: All of this is really good – sometimes working from places that are difficult and frustrating gives us crucial insights.
One thing you all may want to note, however, depending on the topic you finally pick, is this might well be emotionally difficult. You may find yourselves going back over negative experiences or be hearing them from others. You could end up feeling angry, sad, judged etc. So having a plan in place for that (depending on what you end up studying) is a good idea and we can talk about that more in a future chat.
PSG N: I’m not entirely sure
As a HCP I am aware of pressures and restrictions, but change has to happen to improve women’s bf journey and increase bf rates. As a bf mum I’m very passionate about improving both experiences around bf. And around normalising bf in society
Petra: that dual role is in itself fascinating!
PSG Q: I’m not entirely sure either. I think my identity as a breastfeeding mother is the key one here. I’ve not really had too much bad hcp advice so while I am passionate about making sure people get decent advice I also like to highlight the good and the people who helped me a lot with my journey.
Petra: that’s helpful and one thing all of you can ask yourself is when you do this research “who can I bring in? who might I leave out? who can I help? who might I hurt?” You all have particular insights and perspectives about feeding which is going to make your work relevant and meaningful, but it has the potential to invite in some groups of mums or HCPs more than others. Asking yourself who you want to reach and how, and how your own experiences will shape this, is a good idea all the way through.
Sophia Collins: As a mum bfing a 4yo (much to my own surprise) and as an argumentative arsey woman who’s not very good with hearing the word ‘no’.
Petra: Arsey is an underrated research skill 😉
Sophia Collins: That’s handy. I think we probably have a good supply of arsiness in the group:-)
PSG D: Most likely as someone who specialises in translating and mediating between two parties – in my day job that’s civil servants/departments/legislation/policies and childcarers. So identifying the potential issues in communication between HCPs and parents, and where HCPs get their info and HCPs. And being a very persistent devils advocate.
Also I’m not an ideas person, but I do processes!
PSG I: I would like to build on previous research i undertook into women’s use of the internet for breastfeeding support. The gaps in real life support are fairly obvious when you read through posts in online forums. I would like to work with a group of mothers and hcps who are keen to change the system, so that new mothers have a better breastfeeding experience.
PSG R: I’m a bf mum who’s had some incredibly negative early-days experiences, but mostly some ambivalent/positive ones from a later experience. I’d like to use my experiences to bring about positive change to help women at the crucial early stages, because without ‘younger’ breastfeeding there wouldn’t be any ‘older’ breastfeeding.
PSG P: I’m a tandem bf mother who likes info but also trusts women. I have my head struggle between data and to hell with it, do what your instinct tells you – the thing is, I find women /parents aren’t used to listening to their instinct because of social media/advertising and that’s where the data is useful to remind parents of their choices.
Petra: I’ve worked you really hard this evening, but I hope you’ve found it useful. Before we end I’ll post a final thread noting what you’ve told me and options for moving forward.
But before we do let’s talk some practicalities. For example things like ownership, authorship, ethics, outcomes etc. Is there anything about these issues that you feel uncertain about or would like more information?
Also, I’ve been firing questions at you, but is there anything you’d like to ask me that I can help with in shaping your work?
Right at the start of tonight’s chat, this was asked
This may sounds like a silly question but what I was interested in finding out about, is when we want to start research do we have to find an academic to be involved so it can go before an ethics committee, or can we approach an institution direct??
It’s not a silly question at all! You don’t need an academic per se to apply for ethics approval. It would depend on where you were doing the research – so if it was more community based you might apply to an NHS research ethics committee. If you partnered with a university then you could go via their ethics committee.
Depending on what/who you want to study will affect what kind of approvals you need. For example if you wanted to observe HCPs giving bf advice, or interview HCPs or parents you’d need full ethics approval. If you were to look at how people discuss bf experiences on a forum like Mumsnet you may need no approval at all or maybe chair’s action (the ethics committee chair says it’s okay to proceed without a full application needed).
For those of you who’re interested in research in the future but have no academic link, you can also do research without ethics committee approval if there is no ethics committee open to you – in such cases you’d use existing ethics guidance. For example like these ones from the SRA
PSG L: It’s brilliant to dream big in terms of desired outcomes. How do we stay grounded and realistic about immediate and remote outcomes, given the culture we’re operating within?
Petra: I’ve found often when people are either taught about research or encouraged to do it within a health context they’re forced to come up with a question very quickly and then rush off to collect data. This means they either start of dreaming big (but also being unrealistic), or they never get to do the dreaming big part.
Dreaming big is, as you say, really important. But so is being pragmatic. You have the answer to this in what you’ve all done tonight – if over the weekend or early next week you read back over all these threads you’ll see that you’ve had great ideas. But you’ve got a lot of different ones, and based on your skills/time/support it’s not likely you’ll be able to do them to the level you’d want. Which brings us on to the best skill you can have – keep things small, simple, focused. It might feel disappointing after I’ve tempted you with all your wish list ideas – but it will be more likely to help you reach your goals.
PSG L: Petra “Small, simple, focused” – very helpful! Thanks very much!
Petra: I know this because I did not follow my own advice and it did not go well 😉
PSG L: Petra it’s a brilliant one to have for the research road, for sure.
Rome wasn’t built in a day; step by step, little by little seems the logical way to go in changing things in favour of breastfeeding, in this bottle / formula centric world.
PSG N: Something about being mindful of HCP’s perspective not alienating them, not feeling like they’re under fire. We want them to work with us to be able to make changes happen not alienate them/them just being defensive
Petra: Yes, I think that’s going to be crucial. If you want them to change then probably honey is better than vinegar 😉 Perhaps you could also think of ways to bring them in – noting they’re busy and find it difficult to find information or reach mums – so you’ll help them do that. Give them confidence, save them time etc.
PSG C: Petra: oh yes, we have to present this to the “ordinary” HCP like we are doing them a favour and saving their time…that will be a sure winner!!
Petra: so you might also need private places to vent as there will be frustrations you’ll want to share that don’t upset HCPs but also let you think about your own feelings.
PSG C: I have a fear that some research designs and results are not very user friendly – in terms of statistics things like standard deviation and sample size – I know these things potentially have to be looked up dependant on methodologies but I really feel they put people off engaging too much!
Petra: They absolutely do. Good news! Lots of research doesn’t need this to be useful, meaningful or effective. Plus policy makers and many practitioners don’t have a clue what they mean so you can do all the fancy number work or amazing qualitative analysis and they’ll switch off – or run away.
PSG C: phew!!!
PSG A: How do we embrace the differing opinions in the group – both over what we should research and over the key messages we put out (people will inevitably disagree)
Petra: For now I’d be glad of them.
While it might feel there’s a lot of different stuff going on, in general you’re interested in similar things. Yes, you’ll need to discipline yourself to pick one, and there might be disappointment that people don’t get their choice. Although as there are lots of you there are options on trying a few things out in sub groups that together answer a bigger issue. It might sound tedious but having ground rules and agreements is good.
So once you know what you’re going to study it’s agreed at the start (and reviewed throughout) who is going to lead/work on what, having regular opportunities to reflect on things going well/badly, preparing to troubleshoot problems, noting how much work is needed and checking nobody feels aggrieved because they’re doing too much/too little. It’s a conversation. But being mindful it can be derailed or lose focus is important. As is a growing/shifting group where you begin something then new people turn up and want to change it. Once you get going you’ll need to stick with it!
Sophia Collins: The perceived problem is so big, and one we’ve clearly all thought about a lot. How do we narrow ourselves down to one question? How do we decide what interesting avenues to ignore?
PSG I: Yes it might be good to focus on one positive achievable task
PSG C: every day at work I think about creating new audits of things I would like to look at
Petra: I’ll suggest some ideas shortly, but primarily it’s about noting you cannot do everything, you can’t change the world, and you all have brilliant insights so even if you can’t do all this you certainly could work with other groups such as James Lind Alliance or other funding bodies to suggest what NEEDS doing that you either don’t have the time or skills to deal with. As a group you may want to decide if you want to work collectively on one larger project, or a project theme answered by a number of smaller, interconnected streams of work.
Sophia Collins: Who says we can’t change the world?
But yes, sorry, agree with the rest of what you’ve said:-)
Petra: well you can still change the world, but you need to be focused otherwise everyone gets cross, you fail to clean your children, cats run amok and your grand plans end up being coloured in and taken into school – well that’s my case anyway 😉
Sophia Collins: Petra: You just described my life:-)
PSG D: I’ve found my people!
PSG K: Two comments really stood out to me – one about supporting those who are already choosing to breastfeed to ensure that they succeed (because that then raises breastfeeding rates and they influence those around them in normalizing it), & that without successful breastfeeding of younger babies anyway then you’re never going to get people continuing on to feeding older children too.
So if we want to raise breastfeeding rates and normalise breastfeeding, are we best to first address the lack of support & misinformation/bad advice that causes many who start to quickly stop. Where I grew up most of my friends did try to breastfeed their first…but almost all had given up within 5 days. Then by the time they had their 2nd child some went straight to formula & were very defensive & easily offended by any suggestion of breastfeeding… I’d rather go straight in to addressing the cultural mindset and challenging those who don’t value breastfeeding at all…but maybe there’s more ultimate value in supporting the mums who are initially open to try and don’t need convincing (just help), as then if they succeed then they’ll be helping us achieve that ultimate cultural-norm goal by influencing their own circles……
Petra: While you’ve all been talking I’ve been scribbling notes and here’s the main things I’ve taken from your conversations tonight.
You’re all very motivated and have some great ideas. That’s a fantastic start as it’s far better to have good ideas you can whittle down than trying to find something to talk about!
While this group is Parenting Science Gang, right now the main topic you all seem to want to explore is around aspects of breastfeeding.
Within this there is a desire to look at HCPs – that might include where and why bad advice is being given; how to improve training; validation and registration issues. HCPs seem to be the main people you want to reach, although they may not be the main group you want to study.
You have a range of goals, but within those increasing bf rates; improving bf education and support; influencing policy and local and national government level; challenging myths and misconceptions. You noted within this cuts to services and the need to work sensitively and accessibly with HCPs and parents.
As mentioned already, I’d like you to read back over all the posts, perhaps noting some additional thoughts that occur to you as you read them. While you are doing this can I ask you to pretend to be a reviewer or a funder. Of course tonight all we’ve done is talked very broadly about possible ideas, and where you fit within them, but if you imagine yourself as a funder/reviewer you might spot how you’ve got unique insights and fantastic ideas. But on a practical level, do you have the research skills and time to enact them?
My view would be you don’t. And that isn’t because you’re lacking in any way. You’ve got amazing insights as parents, you’re also busy looking after your kids! You’ve often got professional insights/overlaps here too. But few of you have done research before – and the kind of research you want to do would require long-term, highly funded, large scale, experienced teams working full time.
The good news is you can match your ideas and your goals without taking on projects you cannot feasibly run. Here’s one way you might move that forward. There’s a big group of you and you all have unique insights. Indeed if I wanted to study a group as unique as yours I’d have quite the job to find you! Yet here you all are 😉 What if you were to collect all your stories, all the things you experienced from HCPs about feeding – the good and the bad. Accompanied by your observations as practitioners (if appropriate). A sub group of you could analyse that data – what themes come out? More of you could review the literature to look at what HCPs do/don’t know. Others could look at what training is already there. What HCPs should know, where are the gaps. And from this you could make information sheets, films, cartoons – whatever – we can discuss publicity later.
Feel free to ignore, but see if that fits you. We can firm this up in our next conversation – what you do/don’t want to do. Noting that this should be small, focused – a pilot study if you will. The other stuff isn’t going anywhere, but you can do a lot of good with the unique collective you have here.
PSG L: Thanks, what a bird’s eye view. Thanks for sharing your observations; very helpful.
Petra: You’re welcome. Sometimes it helps to have a mirror of your ideas, either to show where you want to go next, or to highlight what things are key. If you read all your conversations back it’ll hopefully give you a far stronger sense of the skills you all have – and those seem far more based on insights, storytelling and raising awareness. You’ve got experiences HCPs need to hear about!
PSG L: Petra: Thanks so much. Very insightful time with you. Worth all the juggling to make it happen. Looking forward to the next Q & A with you.
PSG P: It’s been fascinating and now what I really would like is a step by step breakdown of ‘how to do a study’, what are the steps within it. I think I’ve got the following
- Decide question
- Decide how to get info
- Review by group (in person , Skype, individuals?)
- Decide on bits to share
- Write results by article/poster etc
But what of the details, you know the ‘plug the kettle in, turn on socket’ part of turn on the kettle for making a cup of tea 🙂
Petra: My plan for our next Q&A is having had this conversation you’ll all have a better sense of what is feasible and realistic, matching your possible questions with overall goals. You still don’t need a specific research question but a clearer idea means we can think about methods, who you’ll study (if not yourself) and how to go about that. Plus the fun stuff around dissemination.
PSG B: I’ve really enjoyed taking part in this group chat, thank you so much Petra and of course Sophia & Rebecca et al for hosting such an informed, informative, thought provoking discussion. So much to think about!
Petra: I’m feeling slightly guilty I said we wouldn’t stay up all night discussing research methods – and I clearly lied! 😉
Sophia Collins: OMG, please don’t feel guilty Petra! You’ve helped us so much. Can we have a round of applause for Petra: , who I said we would only take up one hour of her time, and who has been typing like a demon for 2.5 hours!
Petra: I forgot the promised showing off bit 😉
So the two projects I mostly work on at the moment are:
This is where I try and give people help to make research as pain free as possible
And this is where I’ve been trying to archive research on advice giving (and at some point I’ll archive all my problems and answers)
Both need a tidy, like my house ;-0 And thank you for hosting me, I find all this really interesting!
I hope, despite exhaustion and perhaps crying children in your homes, you’re feeling inspired by this. I promise when you read all this back you’ll be really pleased with how much you already know and what skills you’ve individually got to bring to make this project work!
Are you a member of Breastfeeding & Health Care Experiences? If so, join us for the second instalment of this Q&A, this Thurs March 1st.