Why is it so important to involve people with lived experience in research?

In this video, Sophia talks about finding out from a parent that there was almost no scientific research about something which pretty much every parent has wondered – how to deal with tantrums!

Are there questions about depression you think science should have tried to answer?  We’re inviting people with lived experience of depression, or working with people with depression, to look for the gaps in mental health research, quiz researchers and design their own experiment.

If that’s you and you’d like to get involved, please go to this link to read our participant information sheet and answer a few questions about yourself. We’ll then invite you to a private Facebook group where the project is taking place.

Podcasts from Parenting Science Gang

Today we’ve got something for your ears! As part of Sophia’s previous citizen science project Parenting Science Gang, the team produced a series of three podcasts – they looked at why the project got started, the results it produced and the experiences people had participating. Today we’d like to share the second in the series, which was recorded at the Results Fair. Hannah Bestwick chatted to some of the parents and researchers who took part, about what they chose to study and the new and interesting things they found out.

PSG Podcast #2: Final Event Results Fair

You can find the other two episodes here, or under ‘Parenting Science Gang’ on your podcast app.

If you like what you hear, and think you would like to participate in a similar project looking at depression research, please join our mailing list here. We’ll be signing people up very soon, and are looking for anyone who’s experienced depression in the past, or has worked or volunteered with people  with depression.

What is radical citizen science and what can it do?

Before Parenting Science Gang, Sophia ran Nappy Science Gang, another radical citizen science project, which worked with over 600 parents who used reusable nappies on their children, and had questions they wanted to answer with science. They ranged from people with one science GCSE, to research scientists with PhDs in various areas.

This article by Andrew Maynard asks “Can citizen science empower disenfranchised communities?”. It talks about both Nappy Science Gang and a very different project, the Flint Water Study, which looked at lead levels in tap water in Flint, Michigan. Although these projects studied very different things, they shared an idea: partnering members of a community with experts to study the questions they want answered.

Andrew Maynard – Can Citizen Science Empower Disenfranchised Communities?

Depression Detectives will do the same kind of work with people who have either experienced depression in the past, or worked with people who have. If you think you might like to get involved, please join our mailing list here and we’ll let you know when the project launches and we’re signing people up.

Healthcare experiences of high BMI mums – results from Parenting Science Gang

Still wondering what this is all about and if you want to get involved? Today we’re sharing some more results from previous user-led citizen science project Parenting Science Gang.

Big Birthas was a group within the project who looked at how being a larger mum affects your pregnancy and labour. Members of the group felt that they had been treated differently or negatively by health care professionals due to their weight, and wanted to find out about the experiences of other high BMI people during pregnancy and birth.

You can read more about Depression Detectives here, and if you’re interested in taking part please sign up to our mailing list here so we can let you know when we’re starting – we’ll be launching very soon.

Big Birthas research findings

How does being a larger mum affect your pregnancy and labour? The members of Big Birthas Parenting Science Gang know that there can be higher risks for mums with a high BMI, but what about the many larger mothers who have perfectly normal, uncomplicated and healthy pregnancies? Does their weight affect their experiences of pregnancy in other ways?

Conversations within the group revealed that many of us felt that we were given no choices during pregnancy and labour – that our high BMI led to health care professionals failing to offer choices normally available to pregnant mothers, and that often, there was no medical evidence to suggest that these choices weren’t perfectly reasonable. How did that affect us? Unfortunately, many of us had very negative experiences, even where our pregnancies were uncomplicated.

We decided to look into the way that choice was presented to mothers-to-be with a high BMI and how that affected their experiences. We invited volunteers to be interviewed by email and were surprised at what an enthusiastic response we received. Almost immediately, over 60 women replied to our advert. We didn’t have the time to analyse this many interviews, so in the end we conducted 20 interviews and looked at the responses using thematic analysis methods.

None of our findings were a great surprise to us – they confirmed that the conversations that we had had in our group were pretty typical. Although we did hear some lovely stories about knowledgeable health care professionals who treated mothers with dignity, we also found clear themes of unsatisfactory treatment. Several reported that they saw an immediate change of tone when they were first weighed:

“When I’d been weighed and measured she immediately started saying things like “Oh, there will be a problem because of your weight” but wouldn’t explain what the problem was. She wasn’t as friendly then and wouldn’t explain things to me”

Language changed, and some mothers felt lectured and patronised. There were almost constant warnings about potential problems (most of which never transpired), repeated tests for conditions (many of which never developed), with some health care professionals resorting to “persuading” mothers using guilt tactics.

“I was told ‘Well you must have known the risks when you decided to get pregnant, being the weight you are.’”

In most cases, where mothers were pregnant for the first time, they went along with the recommendations of health care professionals without question. It was only after the birth that many realised that they should have had a choice about the decisions made, and these decisions may have made due to an assumption of problems emerging, rather than a careful consideration of the individual mother’s situation.

“I didn’t realise you could refuse induction”

And some mothers felt that they had been actively ignored if they had challenged recommendations.

“I was given all the interventions including an epidural that I had refused”

Most worrying, many mothers found a great discrepancy between health care professionals, in terms of knowledge and subsequent behaviour. Some mothers found that their weight was blamed for everything, even where other heath care professionals didn’t agree.

“The first sonographer very harshly said that the reason she had trouble was because I was quite fat so it was harder to get a good picture. During other scans I was told that weight doesn’t necessarily come into it and it really does depend on the competency of the sonographer and the position of the baby/womb/placenta”

Many mothers received different messages about risk and their options from different health care professionals, which was both confusing and upsetting and didn’t inspire confidence in the system to provide personalised care for their own situation and needs.

“I felt that people knew best, but when professionals are literally disagreeing about the well-being of your unborn baby, it’s a bit disheartening.”

This lack of consistency, coupled with feeling judged and unsupported by health care professionals had a great effect on mothers, many of whom reported that pregnancy had been an extremely stressful time for them.

“I found it scary and confusing during my first pregnancy.”

“I left some midwife appointments afraid that I might die in labour!”

Second Pregnancy

Not unexpectedly, mothers prepared for subsequent pregnancies with care. No one mentioned losing weight, but many mothers talked about being much better informed – reading up on guidelines and risks and being much more confident in asserting their views.

“I had the confidence (or some might say bad attitude) to say, I’m not having all of those scans – they aren’t necessary and are a waste of my time.”

Many approached health care professionals deliberately, either making an effort to form supportive and respectful relationships from the start, or by actively avoiding certain individuals, and in some cases paying for independent midwives or doulas to support and advocate for them. Sadly, in several cases, mothers reported avoiding health care professionals as much as possible – engaging as little as possible and refusing appointments. This is clearly a very worrying result – it cannot be positive for any mother, irrespective of their medical needs, to be making an effort to avoid the health service.

From our Q&As with experts, we know that many of the risks that arise from high BMI are delivered in terms which make them sound excessively alarming. For example, where a risk changes in likelihood from 0.1% to 0.3%, for higher BMI mums it is often represented as “THREE TIMES THE RISK” in big, bold letters, which makes the difference seem very alarming, when it is actually still very low risk. But until the NHS is able to provide larger mums with a respectful and compassionate experience of labour and ensure that mothers feel in control of their own labour, then we imagine that many mothers will suffer from unnecessary and unhelpful levels of stress during pregnancy and some will avoid health care professionals altogether, potentially putting themselves at even greater risk.

You can read our full findings here: Big Birthas’ Findings

What can you expect from this project?

Not sure if Depression Detectives is something you want to take part in, or what exactly it could involve? To give you an idea of what it might be like, we’re sharing the story of one of the participants in Sophia’s previous user-led citizen science project, Parenting Science Gang.

Janene joined the project because her son was an extremely picky eater, and she found there was very little evidence based advice or information available about his problem. She and other parents of very selective eaters wanted to change that, and through Parenting Science Gang they created a study, together with two university researchers, looking at the characteristics of children who are very selective about their eating.

Depression Detectives will be launching very soon, and we’re looking for people to take part who have experienced depression in the past (with or without a diagnosis) or who work or volunteer with people with depression. No research background needed! If you think that could be you, please sign up to our mailing list here and we’ll let you know as soon as we’re open to participants.

Janene’s story – What we now know about sensory sensitivities and eating issues

“George always hated sand – he just refused to touch it,” says Janene, of her son, aged 5. “He would also not walk on wet grass (he screamed if he had to), hated getting his hands wet or dirty, and would never get involved in messy play. He didn’t like wearing sweatshirts and jackets and still complains about clothes being ‘scratchy’”.

But more challenging for Janene was George’s difficulty with eating. “He refused food right from when I first started trying to feed him at six months old. He had lots of anxiety around eating”.

Janene joined Mealtime Hostage, a Facebook support group for parents of children who are extremely selective eaters, and discovered that her family was not alone – that there were many parents in the same position and many of them were not finding good quality information about their children’s condition. There is a newly defined name for the condition – Avoidant/Restrictive Food Intake Disorder (ARFID), but it is not well understood and many health care professionals aren’t able to give evidence-based advice.

So we, the Mealtime Hostage parents, decided to do something about the lack of research in the area, and do it ourselves. We joined Parenting Science Gang, a Wellcome-funded, user-led citizen science project that helps parents design and run their own research. We teamed up with Dr Terry Dovey of Brunel University and Professor Jackie Blissett of Aston University and put together a study to look at the characteristics of children who are very selective about their eating. (You can read more about how we did this here.) How typical were George’s behaviours?

The results are interesting. It is still early in the analysis of the data that we gathered, and Terry and Jackie will be looking into it in close detail over the coming months, however it was noticeable that the many of the children with issues with eating also had “sensory issues” – they were sensitive to sight, sound, taste, smell or touch, and disliked experiences such as touching wet grass or itchy clothing. Looking across all the data, as food fussiness increased, so did sensory sensitivity, with children who had ARFID and Autism Spectrum Disorder (ASD) having the greatest sensory issues.

When we looked more closely, we saw that the children with ARFID tended to be sensitive to textures that they felt and to lights, but not to loud noises. They didn’t tend to have issues with things that they heard. This is interesting as many children are sensitive across all their senses. Could ARFID therefore be linked to touch and sight more strongly than the other senses? To answer that question, more research will need to be done.

However children with eating issues didn’t tend to have social difficulties. Looking at the whole group, they are socially more like typically developing children with no eating issues – they can get along with different people, make friends and generally interact well.

We were also interested, but not surprised, to find that there seemed to be a link between children who suffered from reflux and those with ARFID. These groups showed similar scores for sensory sensitivity. This made sense to us, for as Terry says “I think that if you find eating food painful you are going to start distrusting your world.”

Over the coming months, Terry and Jackie will be digging deeper into the data and trying to build a more complete picture of how sensory sensitivities are linked with ARFID and other selective eating conditions. We hope that by better understanding these conditions, health care professionals will be able to put together more effective interventions to help children like ours.

You can read more about the background to the Mealtime Hostage Parenting Science Gang research here: http://parentingsciencegang.org.uk/groups/mealtime-hostage/mealtime-hostage-parenting-science-gang-the-story-so-far/ and explore our other findings here:  http://parentingsciencegang.org.uk/experiments/first-findings-of-the-mealtime-hostage-research/