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Table 3 Key insights, supporting quotes and opportunities from the Inspiration Phase

From: Using human centered design to identify opportunities for reducing inequities in perinatal care

Insight Themes & Supporting Quotes Design Opportunities
1. Marginalized people are not welcomed as equal, trusted partners in their care Unequal power dynamics breed lack of trust
“My care was ‘sporadically informative’. They fed me information only when they wanted. I got only information when I pressed for it … I always felt they knew something that I didn’t.” - Pregnant person
Providers make (often incorrect) assumptions about what pregnant persons want to know
“I just tell the mom that the baby is perfect. Because the value of reassurance to the woman is so much greater …”– Obstetrician
Experience with racist stereotypes can make pregnant persons scared to advocate for themselves
“[Pregnant persons] often times are just seen as the angry black women who are vocal and argumentative … they learn to be quiet.” – Midwife
(a) (Identify ways to) proactively shift power dynamics between pregnant persons and their providers to foster trust and partnership
(b) Help healthcare team members to recognize and undo their own biases
2. Every touchpoint is essential, and one bad interaction can change the course of care Disrespect is communicated in many different ways, and adds up
“Clinic is busy, but does that mean you can’t give eye contact? Does that mean you leave [the pregnant person] in the hallway?” - Pregnant person
“Something like being scheduled for the wrong time in your clinic appointment, little things that nobody likes. However, in the context of someone who’s lived a life where they’ve been a victim of the spectrum of racism, those things add up in a big way.” – Community Activist
If pregnant persons can’t trust that they’ll be treated well, they’re less likely to engage
“If I feel as though I’m not worth your time, I’m not gonna come back.” - Pregnant person
Lack of trust is dangerous
“There was a patient from Haiti and this was her 2nd baby. She had a routine c-section. An hour after surgery, she arrested, & they couldn’t bring her back. Later found out that someone had told her not to get pregnant again. She intentionally didn’t tell anyone about that. To me, there wasn’t trust there somehow for her to disclose that.” –Family Medicine provider
(a) Approach every interaction as an opportunity to earn trust
3. The system stigmatizes lived experiences, and then requires people to re-tell their stories multiple times History stigmatizes one’s care
“People see mental health problems and they just stiff arm them.” - Pregnant person
Repeating a traumatic history breeds shame.
“A lot of people feel that they were being judged for their story. The more they told their story, the more chances they have of being judged.”– Midwife
(a) Create less burdensome mechanisms for pregnant persons to communicate their stories across care transitions
4. Racism affects how people show up, and then negatively impacts their care The burden of structural and interpersonal racism impacts how people show up
“It is the hardest thing for me when a woman comes in and so much has already happened to them that the option to rapport build is just not there at all” – Midwife
“Women who are vulnerable don’t feel like they can speak.” –Midwife
The system punishes pregnant persons who are impacted by care barriers caused by systemic racism
“At [care institution], I was turned away if I was late.” –Community advocate
(a) Structure each visit around what the individual says they need that day, and create mechanisms for them to easily communicate this with providers
5. Barriers to care are significant Being “compliant” with care isn’t as easy as it sounds
“For someone who’s at risk for hypertension and pre-eclampsia who needs to have her blood pressure checked, no one thinks to ask what that involves – childcare for three kids, buses, time off work. We [providers] just say cavalierly that they need to get their blood pressure checked and not think about maybe teaching them about how to take their blood pressure, the implications this may have on their lives and what it means for their lives.” -Midwife
It’s hard to focus on pregnancy when you’re focusing on survival.
“I didn’t know the due date, but I knew I’d get 3 days with a hot shower.”– Homeless Pregnant person
Those who need the most resources have the least around them
In Noe Valley there is all kinds of stuff; I don’t want to have to take a bus just because I don’t have that in my community. -- Pregnant person living in Public Housing (Potrero Hill)
(a) Make care and services more valuable and easier to access, especially for those who face the worst outcomes and the most barriers to care
6. Lived experience (social, medical, or cultural) makes pregnant persons “experienced” and in a position to help others History makes the expert with lessons to share.
“[Women with lived experience:] They’re experts, consultants, partners.” – Community Health Worker
Pregnancy is a vulnerable time, and having support is essential
“To have other camaraderie with women who are in the same situations as you are, to see a light at the end of the tunnel. It’s hopeful, inspiring…nice.” - Pregnant person
“I feel like coming into motherhood I’m not equipped, not adequate. I’m going to mess her up.” -Pregnant person
(a) Incorporate people with lived experience as valued members of the healthcare team who can help others
7. Pregnancy is treated like a disease, rather than a life-changing event for pregnant people and their families Over-focus on the pregnancy and not the pregnant person is de-humanizing.
“In the process I got weak. I got lost. Because no one cared for me.” --Pregnant person
Pregnant people want the celebration, the proverbial baby shower.
“You want everyone more excited than you are....It’s supposed to be the best time of your life –I didn’t have that opportunity.” – Homeless Pregnant person
Community is as important as medical care for healthy outcomes
“Ultimately for me, it’s support and community. We can get a lot of things from doctors, we can get information up the wazoo. But it is supporting what we believe and what we want for the future of our child that is important to me.”
(a) Use resources to provide more community support, rather than more medical care, during pregnancy