Birth Matters: A Collaborative Research Project Exploring Birth Trauma

trauma; traumatic

Editor’s note: Since our original publication of this piece on November 29th, we’ve received a lot of feedback about survey participants only being eligible if they’re six months postpartum or less. We know that often trauma and a diagnosis of PTSD come long after the six month mark, however we have to limit our eligibility criteria. The information collected from this survey will give us the evidence to do more work with more moms – and expand our criteria in the future. The deadline to participate is January 31, 2017.

The most humbling part of being a staff member at Postpartum Progress is meeting moms and hearing their stories. Whether a mom is newly diagnosed, or is recovered from a perinatal mood and anxiety disorder there is something special about being entrusted with her story.

The more I listen the more I notice common themes; many women tell me about events during pregnancy or birth they consider to be traumatic. These often contribute to their later diagnosis of postpartum depression, anxiety or another mental health concern.

One of most common issues that comes up is birth trauma. So many of our moms experience something traumatic that leaves them feeling scared and alone. And trauma doesn’t look the same for everyone.

Trauma can occur if your wants and needs are ignored and you are treated without respect. Poor communication from your doctor that leaves you uncertain about your health or that of your baby can be traumatic. Protracted labor, poor pain management, medical interventions, emergency c-section, a baby in distress, a stay in the NICU; any of these can be traumatic and each of us responds differently.

Because responses to childbirth can vary from very positive to negative and traumatic, Postpartum Progress is teaming up with Dr. Sharon Dekel from Harvard Medical School/Massachusetts General Hospital to collect information about emotional responses to childbirth. We want to learn about different reactions to childbirth, why they happen, and what their long-term impacts to mom and baby are.

We want to survey as many women as possible, with all kinds of childbirth experiences – to find out what is the emotional impact of childbirth on women.  Our goal is to know how we can help women overcome their negative experiences and improve positive ones. This information can help to develop assessment and prevention tools for traumatic childbirth reactions.

No matter your birth experience, if you are at least 18 years old and have had a baby in the past six months can take our survey. It is completely anonymous and will take about 20 minutes to finish.

Together we can start to better understand and treat traumatic birth experiences.  Click here to find out more about the survey and to participate!  The deadline to participate is January 31, 2017.

Postpartum Progress Receives $15,000 as Part of the PCORI Pipeline to Proposal Program

Postpartum Progress Receives $15,000 as Part of the PCORI Pipeline to Proposal Program
We are excited to announce to our Warrior Mom community and all of our partners, friends and supporters that Postpartum Progress has received a Pipeline to Proposal funding contract from the Patient Centered Outcomes Research Institute! This contract will help us build stronger relationships with researchers and other stakeholders, all in the pursuit of conducting our own research about technology, peer support and maternal mental health.

This is a big deal. The Patient Centered Outcomes Research Institute, or PCORI for short, is a nonprofit, nongovernmental organization that is authorized by Congress. Since 2010, they’ve provided over $1 billion dollars in funding to projects that are committed to involving patients in all aspects of the research process. Their mandate is to increase the quality and quantity of information available to patients and the public when making important decisions about their health care. Patients and their desired treatment options, outcomes and the impact of these factors on their families and communities are just some of the guiding principles of PCORI’s work. PCORI calls it “research done differently.”

So where does Postpartum Progress fit into all this? We’ve received $15,000 as part of the PCORI Pipeline to Proposal program. This tiered program gives organizations like ours the money necessary to start important conversations with researchers about issues that matter to us. Things like, “we know peer support is really important for moms recovering from PPD, so how can we improve access to it?” And, “what innovative ways can we use social media and other technology to build community for Warrior Moms – and then generate evidence that it works?!”

Here’s the best part. Not only are we connecting with researchers, we’re also involving our Warrior Moms. In fact, you’re the biggest part of our upcoming project! There is going to be an opportunity to not just participate, but to help guide the process and work alongside researchers, other Warrior Moms and staff at Postpartum Progress.  

Once we meet our project goals and have demonstrated success with our initial contract, there are more funding opportunities that will help us to continue building partnerships and engaging our moms. The goal is to create a formal research proposal that evaluates important aspects of peer support and our online community that YOU think are important and matter most. The research proposal will then be submitted to PCORI for review – and hopefully funding!

So many of us are left feeling isolated and alone during our PPD journey. We question our experience and wonder about our self-worth, our abilities as a mom and any impacts to our children. This funding is recognition that our lived experience matters. That our mental health matters. And that we can make a difference when it comes to improved treatment options.

Stay tuned for more information about our upcoming project and how you can get involved.

PPD ACT Off to a Great Start with 10,000 Women Enrolled in PPD Study

One month ago we announced the launch of PPD ACT in partnership with UNC School of Medicine, Dr. Samantha Meltzer-Brody, MD, MPH, director of the Perinatal Psychiatry Program at the UNC Center for Women’s Mood Disorders, and Patrick Sullivan, MD, director of the UNC Center for Psychiatric Genomics, UNC Health Care, and UNC School of Medicine Center for Innovation, the Queensland Brain Institute in Australia, the National Centre for Mental Health at Cardiff University in the United Kingdom, the National Institute of Mental Health and, of course, Apple. As of today, 10,000 women have enrolled in the largest ever genetic study of postpartum depression via the iPhone app.

PPD ACT Off to a Great Start with 10,000 Women Enrolled in PPD Study -postpartumprogress.com

TEN THOUSAND.

You Warrior Moms really know how to bring it, don’t you?

Of those 10,000 enrollees, 5,000 are eligible to submit their DNA via the spit kit that will be mailed to them, free of charge.

These numbers are encouraging and speak to both the amazing ways technology has and will continue to shape our lives and our understanding of mental health as well as to the willingness of those who have experienced postpartum mood and anxiety disorders to make a difference for moms. Signing up via PPD ACT was an easy process for those with an iPhone. The fact that we can also collect DNA so easily in this day in age kind of paints a “we now live in the future” type of scene. This is the future, Warrior Moms, and we’re making a difference. We’re doing it!

The two lead doctors had things to say on the topic of mobile use and willingness to help other moms as well.

“The initial response to the study and mobile app has been incredibly encouraging,” Dr. Meltzer-Brody said. “This is a testament to the need for more research, acceptance and support for women who suffer from PPD and similar mood disorders. But our work is far from over.”

“This is a completely new way of recruiting study participants for genetic studies and is proving to be a highly effective way to recruit women for study participation in order to reach the large sample sizes necessary for psychiatric genetic studies,” Dr. Sullivan said. “The large sample size estimates are based on work I’ve conducted with the Psychiatric Genomic Consortium (PGC) on other psychiatric disorders.”

The study would like to see a total of 50,000 women, so we still have time and space for more moms to download the iPhone app and join the study. Which means you still have time to tell other moms about the app. We know you’ve been active on social media sharing it on your Facebook, Twitter, Instagram, and every which place you live online.

We’d also like to encourage you to actively speak to those in your daily, off-computer life. That moms group you go to? With statistics showing one in seven moms experiences a postpartum mood and anxiety disorder, you’re not the only mom showing up every week fighting postpartum depression. Bring it up. Have you talked to your mom about it? It might broach a conversation the two of you need to have about what happened back then—and what’s changed since. What about your sister-in-law? Your cousins? Your best friend from high school and college? The women in your running group. Your co-workers—even male ones. Because not only do men experience postpartum depression, but maybe their wives fought it or are still struggling.

We have this great chance to not only gather this information and be part of research that will change things for the future, but to initiate conversations and thus destigmatize mental illness all over the place right now. Part of the mission of Postpartum Progress is to fight stigma, and we know that every single time you have one of these conversations, whether online or in person, you’re doing just that. You’re making it okay for another mom to say, “Me too.”

So, thank you, Warrior Moms. Thank you for jumping in on this amazing research project. Thank you for sharing it in your circles. We now ask you to continue sharing. Here’s what Katherine Stone, Postpartum Progress’ founder and CEO, had to say about the work you’ve been doing.

“Our ever-growing network of Warrior Moms is working diligently to increase awareness among women who have suffered from PPD and related mood disorders in the past,” said Katherine Stone, founder of Postpartum Progress. “We want to ensure that women understand that their participation in this study is a significant contribution toward treating – and eventually preventing – perinatal mood and anxiety disorders.”

Katherine believes in you. I believe in you. The whole team at Postpartum Progress believes in you. And we believe in this research. We believe it will give us the information we need to best help moms as we continue forward in our mission.

If you haven’t downloaded the free iPhone app yet, you can download it from the App Store. You can also share the link with those moms in your life: https://itunes.apple.com/app/id1048185979. If you have more questions about PPD ACT, we have answers. You can also reach out to us if you have further questions. We’re here for you; you are never alone.

Take Your Health into Your Hands: Join the BFD Study with Iodine’s Start App

Take Your Health into Your Hands  -postpartumprogress.com

Iodine’s Start App and BFD Study

Postpartum Progress is excited to be continuing its partnership with Iodine, the creators of an app for your iOS smartphone called Start that helps you track your progress when starting a new anti-depressant. We believe that when your health information is given to you in an easy to understand way, you’ve got the power to act on it and make better decisions. Better decisions can mean a quicker recovery and that you’ll start feeling like yourself again.

Start is used when you first try an antidepressant and is also really valuable when you make a change to the dose of your current medication. The app is a quick download to your phone and set up will take a few minutes as the app guides you through a nine question depression screening test and asks for details about your medication. Start helps to get rid of some of the confusion about your new medication by:

  • Sending you a push notification when it’s time to take your dose
  • Providing encouraging tips and check-ins throughout the day
  • Tracking your mood and depression symptoms along with any changes
  • Asking about possible side effects of your medication
  • Providing alternative strategies for managing your depression like exercise, sleep, and eating habits

Every two weeks Start will provide you with a report that you can then take with you to your doctor to discuss your progress. You’ll be able to talk about changes in your mood and other symptoms with more confidence and work with your doctor as you decide next steps in your treatment.

Samantha, one our moms who has used the app writes, “I am just at the month marker of taking my new meds and by the way I’m feeling, I know they are working and when I meet with my doctor I don’t have to try and remember that the meds make me tired, or not sleep enough, or I didn’t want to eat the first week I started. I wish this app was around all the times I started new meds for my depression/anxiety in the past. Sometimes it’s hard to rely on memory and with something this important I didn’t want to forget a thing.”

And Meaghan shared, “I found it helpful. Especially when it would say things like “you seem like you’re still anxious, but it’s okay because your medicine still needs time to work.” It gave me clarity to see that things were improving as time went on, and also helped my doctor and I decide to increase my dose by 10mg.”

Based on feedback from our Warrior Mom community and discussion with Iodine, we’re going to be piloting several new features including:

  • Push notifications from the Postpartum Progress team that offer encouragement, tips and suggestions as you progress through your treatment.
  • A private community forum hosted by Iodine where you can connect with other Warrior Moms who are also using the app. The community will be supported by the Postpartum Progress team and you’ll be able to ask questions and provide feedback.

The BFD Study

Start Study: Enter bfds

Using the Start app, Iodine wants to increase the amount of data available to study depression and medication. The Better, Faster Depression Study will be used researchers to find out what treatments work better, faster, and with fewer side effects. This is not only good news for you right now, but also for other mamas down the road.

Participating is easy. All you need to do is download the Start app and enter the referral code bfds to have your data included in the study. No information is personally identifiable and there is no extra time on your part. Just use Start like you normally would for four weeks.

Your participation in the study also means Iodine will donate $20 to Postpartum Progress. Once you download and launch the app, BE SURE to enter the referral code bfds and select Postpartum Progress as the charity to receive the $20 donation from Iodine.

Note: While the landing page instructs you to use it in upper case, please type bfds in lower case at this time.

App Development Feedback

Iodine is also interested in getting your feedback about Start and working together to make it better! This is an incredible opportunity for Warrior Moms and Postpartum Progress to use our voice and the power of our community to influence the design of tools and programs that can help in recovery from PPD.

What kind of information do you want it to collect and provide feedback on? Are there technical issues that make it hard to use? Is the interface user friendly? What information is valuable to mamas? How can the app connect you closer to peer support? What additional treatments would you like to see included in the app? Therapy? An exercise log? Sleep tracking? Additional integration with apps you already use?

Leave your feedback in the App Store, on our Facebook page, or here on the blog. And Android users, we haven’t forgotten about you. Iodine is busy working on a version of Start for your phones that will launch in the next few months. We’ll be sure to let you know when it’s available.