Have Your Say On Our Top 4 Mom-Powered Research Priorities
When MMHRC officially launched back in August we talked a lot about mom-powered research.
We want to create a platform for women with lived experience to get involved in research and make it relevant. Our priority was and is for moms to feel that their thoughts and opinions matter. That someone is listening to them about their wants and needs.
As patients and users of the health care system, we know how hard it can be to find the right information and resources when you’re really sick. When you’re dealing with a mental illness, the last thing you need is uncertainty about treatment options. Or trying to find credible information about your symptoms or diagnosis. For those of us who are further along in our recovery or who are now managing chronic mental illness, we have some pretty strong opinions and ideas about what would help and make a difference.
Now that we’ve had more time to talk to moms, listen to feedback and grow our community we’ve got a clear idea of what your priorities are and where we as an organization need to focus our efforts. Where we need to hone our research questions, develop projects with our partners and start knocking on doors to seek out the funding to make this become a reality. But first we need your help to prioritize our priorities.
We’ve developed four project ideas that are based entirely on feedback from moms and we’re launching a survey to get your input about where we should focus first. The survey should take you less than two minutes to complete and if you provide your email address you’ll be entered to win one of two $25 dollar gift cards to Amazon.com or Amazon.ca. Read more about each project below and then have your say by clicking here.
1. Validate the New Mom Checklist
The New Mom Checklist is a tool created by patients-for-patients and is used by moms, advocates and health care providers. It takes the clinical diagnostic criteria for postpartum depression and turns it into regular, easy to understand English. While it’s become popular and heavily used, it hasn’t been validated. What this means is that the tool hasn’t been assessed in a clinical setting for accuracy and it’s ability to consistently predict or identify the signs and symptoms of postpartum depression. We want to change this and get the New Mom Checklist into the hands of moms and providers with the assurance that it’s backed by evidence.
2. Systematic Review and Knowledge Translation of Medication Information
One of the most difficult decisions any mom makes is whether or not to take medication. Stigma, fear and lack of information make this really murky water to try and wade through. We’re not suggesting that medication is the only answer or single way to treat mental illness, but we do know that it is incredibly helpful for some. A lot of women suffer for a lot longer than necessary because of the conflicting and anxiety inducing information they get. There are big questions about medication safety, efficacy, side effects and possible effects to our babies. Through this project we’ll review the research and create patient education materials that can be shared with moms and health care providers alike.
3. Birth Trauma and Post-Traumatic Stress Disorder
When speaking with moms who have struggled with moderate to severe postpartum depression and other mental illnesses, there is often a common theme of traumatic experiences during pregnancy, birth and postpartum that leave them feeling hyper vigilant. Their experience may trigger memories or flashbacks from a previous trauma. In other cases moms may experience events that are traumatic like unmanaged pain, various interventions like emergency C-sections or their baby may be in distress and require a NICU stay. While there is increasing recognition of birth trauma being a cause of long term post-traumatic stress disorder, there is still need for more evidence to support women’s lived experiences. Through this project we’ll work to collect primary data to support larger scale studies of birth trauma.
4. Hormones, Diet and Nutrition
It’s commonly accepted and understood that women’s hormones shift wildly during pregnancy and the postpartum period. What’s less well known is that many women experience new, or worsening symptoms of mental illness as their body tries to return to equilibrium. Often physical symptoms of hormonal imbalance are ignored by doctors and many moms turn to the internet to do their own research. Until hormone health is addressed, full recovery from a maternal mental illness can be difficult. Closely connected to hormone health is diet and overall nutrition, but little information is made available to postpartum women. Through this project we’ll identify key research questions, find the right researchers already working in this field and work to develop education materials that make sense for moms.
Making It Happen
This is a lot of work but we’re the group to get it done. With each project, we will:
- Identify the right stakeholders to bring to the table to talk about our plans and develop a proposal and budget
- Seek funding through traditional sources (government, private foundations), private partners and fundraising (Crowdrise, maybe even Kickstarter!)
- Follow through with the project proposal and conduct the work in partnership with researchers
- Publish the results and present our findings at conferences
- Create a communications plan in partnership with our stakeholders to get the results from our research spread to as many moms, health care providers, researchers, public sector institutions and insurance, health and tech companies – virtually anyone that has a stake in maternal mental health
To help us decide where we start take a few minutes to complete our survey by clicking here. Your feedback is invaluable as we plan for 2018 and beyond.