“When You Look at This Chart,That Is Not My Whole Life”: Caregiver Perspectives to Inform Improved Primary Care Practice and Outcomes

Abstract

Objective:

Worsening rates of infant and maternal mortality in the United States serve as an urgent call for multi-modal intervention. Infant Well Child Visits (WCVs) provide an opportunity for prevention, however not all infants receive the recommended schedule of visits, with infants of low-income and Black families missing a higher portion of WCVs. Due to diverse experiences and needs of under-resourced communities throughout the United States, caregiver voice is essential when designing improvement efforts.

Methods:

Purposeful sampling and interviewing of 10 caregivers in Cincinnati, OH was performed by community peer researchers. Interview transcripts were evaluated by the research team, with identification of several important themes.

Results:

Nine out of 10 caregivers self-identified as Black. All young children of the interviewed caregivers had Medicaid as their insurance provider. All interviews highlighted rich perspectives on caregiver hopes for their child, family, and selves. Establishing trust through empathy, shared decision making, and the nurturing of interpersonal patient-practitioner relationships is crucial for fostering a positive healthcare experience. Levels of mistrust was perceptibly high across several interviews, with lack of racial concordance between medical provider and family exacerbating the issue for some caregivers. Caregivers voiced a tendency to rely on family and community members for when to seek out health care for their children, and additionally cited racism and perceptions of being rushed or judged as barriers to seeking further care.

Conclusion:

This study emphasizes the importance of being community-informed when considering interventions. Prior research on the topic of missed WCV’s often focused on material resource availability and limitations. While that was commented on by caregivers in this study as well, equal—if not more—attention was directed toward interpersonal relationship formation, the presence or absence of trust between practitioner and caregiver, and the importance of social-emotional support for caregivers. We highlight several opportunities for systemic improvements as well as future directions for research.

Introduction

Across the globe and in the US, efforts to improve population health are focusing increasingly on maternal and infant health and well-being as essential targets.^1,2 As with other key health indicators, the US is performing poorly in comparison to similar nations, with rates of infant and maternal mortality higher than in any other high-income country. ³ The numbers themselves are disturbing, with 5.4 infant deaths per 1000 live births (compared to 0.7 deaths/1000 live births in Australia and New Zealand) and 32.9 maternal deaths per 100 000 live births (compared to an average of 12/100 000 live births in other high income countries).^{4 -7} When disaggregated, the data further reveals stark and unjust inequities that highlight women and infants of Black and American Indian backgrounds, as well as those with lower socioeconomic status, are burdened disproportionately.^8,9

Improving maternal-infant outcomes and eliminating existing inequities are urgent and essential aims. Causes for adverse and inequitable maternal-infant health outcomes are multifactorial, thus a multi-pronged intervention approach is necessary. The primary pediatric clinic represents 1 potentially powerful place of intervention, with well childcare visits (WCVs) as a broadly recognized place to positively influence newborn health within the healthcare system, particularly as it relates to primary disease prevention (intervention before a health effect occurs).^{10 -12} To that end, the American Academy of Pediatrics (AAP) recommends 8 preventive health care visits within the first year of life alone. ¹³ Many families, however, do not complete all recommended visits within their child’s first year, with Black families and families of low-income households disproportionately not completing all visits.^{14 -16} Possible reasons include structural disinvestment and resource limitations within racially marginalized and low income communities, medical mistrust rooted in negative past experiences including perceived racism (individually and societally), and health-related concerns such as fear of infectious exposure to COVID-19 during the height of the pandemic.^{17 -20} All proposed reasons have the effect of negatively impacting the relationship between patient family and provider. A relationship which, when rich, has been proven to increase patient activation in preventive practices.^{21 -23}

We sought to learn about the hopes, needs, and experiences of parents and caregivers who either currently are or recently have cared for a newborn in order to identify opportunities for relationship building with pediatric primary care practices. A multidisciplinary family-community-academic team, co-led by researchers from Cincinnati Children’s Hospital Medical Center (CCHMC) and Design Impact (DI—a 501(c)(3) social innovation consulting firm), created the Newborn Project to learn together about the hopes and challenges of families with newborns. More specifically, we aimed to learn from families about their aspirations for themselves and their newborn children, as well as learn about how they envision their primary care practice supporting them. We plan to have the findings of this work inform future strategies to improve the WCV experience, and inspire subsequent improvement work to be co-led by family and community partners with the goal of reducing missed WCVs in our patient population.

Methods

This study was co-created by a multidisciplinary CCHMC research team, community-based research partners from DI, and 3 community peer researchers who are also mothers. The collaborative research team together developed the interview guides, set sampling criteria, conducted the interviews, and analyzed the data. The interview guide was co-created by the multidisciplinary research team, which included academic partners, community organization partners, and peer researchers, through a series of iterations across several sessions. Each interview was led by one of the peer researchers, with a community-based partner from DI supporting them. The peer researchers were additionally responsible for recruitment, targeting caregivers of children between the ages of 2 weeks to 2 years old. Recruitment methods included flyers as well as live recruitment at community-based groups connected with the target population. Timing of interviews was arranged based on the needs of the interviewees. All participants lived within the city of Cincinnati, OH, and were either uninsured or had Medicaid public health insurance. The peer researchers conducted a combination of individual and group interviews, with a total of 10 caregivers. This study was submitted through the CCHMC IRB and determined to be exempt.

Interviews were conducted via video-call, using a semi-structured interview guide (see Supplemental Appendix). They were recorded and then transcribed using an automated service and reviewed by a clinical research coordinator for accuracy. All names and identifiable information were removed from transcripts to ensure anonymity, and caregivers were assigned a number/letter sequence for referencing purposes. Transcripts were reviewed by 4 researchers at CCHMC and coded using content analysis techniques. A fifth impartial researcher also affiliated with CCHMC then reviewed all codes and, using thematic analysis methods, extracted themes and subthemes with representative quotes (see Table 1). The 4 researchers who performed initial coding were asked to review themes to ensure accuracy and objectivity.

Table 1.

Caregiver Hopes for Their Child and Family.

Code	Quote
As it relates to health
To be healthy	That I can continue on helping him stay healthy, grow up to be smart. Mainly healthy. COVID-free. Little things like that. A huge hope for her is that, you know, this is, that she’ll be healthy and well educated. No, I mean, he has to have the proper care so he can be a healthy adult. It starts right now.
To be strong	One of my biggest hope was to like breastfeed, and for her to be strong, and for her to just grow, you know. For her to be strong spiritually, mentally, physically. So that’s like my hope for her, you know that she has a strong foundation, and that she carries that with her through the world.
To meet their milestones and grow	That they would meet all the you know, milestones and the development, just to eat healthy, you know, or to just be who they are. Any questions or concerns that I have as far as growth, you know physical growth and mental growth.
As it relates to happiness
To be without struggle	Um, well, I guess the hopes for my family will be for one not to struggle, you know, and not have to deal with like, everything that comes with that, like struggle loving, thinking that that’s the norm. And I hope for my children to realize and be prosperous. I hope for really just happiness is like, the biggest thing for me and my family. We’re working toward, like, love and happiness and positivity. [. . .] I hope she has fun and enjoys her life and does all of those great things and has lots of experiences.
To be safe	Ah, pretty much just to be safe in life. That’s the number one goal. That she’ll live in a more sane world than it is now that. [. . .]. So yeah, yeah, I want her to be safe. And one out of four girls are being molested in America, that’s a problem. It’s a huge problem. One of the four and so watching her like a hawk. It would be more of like this, me and my grandkids, just living a carefree life, you know, just making sure that we’d be away from certain things, certain people, certain energy, things like that.
To be able to be themselves	[. . .] How you feel about yourself matter more than that. And I think that’s like the basis of like suffering for real, about how you feel about yourselves. And if there ain’t no enemy within, the enemy outside can do you no harm. So you got to figure yourself out and be cool with who you are and know what you got and how to use it. And, you know, we all come with our own matrix of skills and abilities. And making our house or our home, whatever that looks like, a place where people can feel this same luxury to like, see themselves, communicate, feel free, feel open, you know, feel natural, be like their most authentic version of who they are. I hope that she has an opportunity to explore herself, explore her environment, explore the world, and see things from so many different perspectives and have experiences that are positive and not toxic and traumatic. Yeah, for them to have the right to be who they are.
To be prepared in the event of negative life events	So I’m just keeping those things in order for her to kind of keep her on that path, hoping that she’ll never have to endure those things.
As it relates to the family unit
To have financial security	Oh, for all my kids to have their own business before they get out of high school; probably even before they get into high school they have their own business. [. . .] Understand how to manage their own money and how to be a person in this world. [. . .] I think by telling our teenagers to have their own business going and once they financially stable, I ain’t really got to worry about them no more.
To be connected	So I really didn’t have nobody to talk to. So I feel like I would just want them to come to me, you know, if they have any problems. But I also want her to feel like she could trust me. Where she could tell me things whether, you know, we might not approve of it being parents, but still for her to build that trust with me. One just being very connected to each other, and tapped into each other, regardless of our, like, physical position in the world, you know, so that’s, that’s me, that’s what my family would probably be our hopes.

Results

Participants ranged in age from 22-55 years. Of the 10 caregivers, 9 self-identified as Black, with 1 self-identifying as white. When evaluating caregiver type, single mothers, mothers in 2-parent households, 2 grandmothers, and 1 father were interviewed. When all interviews were reviewed in summation, most of the conversation took a strengths-based lens and focus. Although several caregivers remarked on negative past experiences both in- and outside of the medical system, they continually expressed hope for themselves, their children, and a future medical home that they might partner with. Each of these themes are discussed separately in the following section, with representative quotes. Quote tables for each section can be found in the Supplemental Appendix.

Caregiver Hopes for Their Child and Family

Individual interpretations and responses to what caregivers hope for their child and family were diverse, spanning from hopes about health (to be healthy, to be strong, to meet their milestones) to hopes for happiness (including freedom to be themselves and explore their world, self-actualization, to be safe, and to be without struggle). A salient point mentioned by a few, but not the majority, of caregivers included the hope for security without naivety, “experiencing enough trauma that they know how to maneuver in bad situations. Especially being a Black woman in society.” (FG, CG3).

When speaking about the family unit, the most discussed wish was for connectedness. The second most common desire was financial security—particularly as it related to preparedness for unknown future events. In speaking of connectedness, their words reference the hope that open communication would always exist amongst their family, with the inherent respect of individual differences (of choices, opinions, lifestyles) that that comes with.

“Just being tapped into what’s going on in each other’s life, tapped into each other’s feelings. Having an open honest communicative relationship, being kind of on the same wavelength with what’s going on. And you know, just being in tune with what each other, each other’s needs, wants, desires, my hopes for my family might not be the same hope that my child has 10 years from now for herself, or might not be the same hopes that my partner has tomorrow.” (FG, CG3).

When speaking about hopes and wishes for their child and family, a desire to pay learnings forward to future generations could be heard, “Well, I always say I want to be a better caregiver for my grandkids than I was as a parent, because I knew I was absolutely not the best parent.” (0915_3T).

Caregiver Hopes for Themselves

Caregivers were also asked about their hopes and aspirations for themselves. Commonly addressed topics included concrete needs (eg, social-emotional support, financial aid and security, and disaster preparedness) as well as abstract goals related to self-improvement, fulfilling their purpose, and being happy or at peace. Although commentary on concrete goals often included financial stability or security, only 1 caregiver specifically mentioned employment as a desire. This was surprising because the interviews were held during the early part of the COVID-19 pandemic, which significantly impacted both the job market as well as resources available to families in need.

Participants also frequently touched on hopes for themselves specifically in their role as a caregiver, showing how they value this role. Their discourse included hopes of being a good role model, a good caregiver, and teaching those in their care the realities of the world, even when it’s not positive. “My hope was to give them the truth about life [. . .] as far as I knew it, you know, like, it’s enough with the fairy tales, and everything, give them real meaning behind things.” (0818_2M) (Table 2).

Table 2.

Caregiver Hopes for Themselves.

Code	Quote
As it relates to concrete needs
Social-emotional support	To have somebody to help with the baby like you know, like the postpartum, they be acting tough about it, but they might be emotional and they be needing somebody to talk to sometimes. I didn’t really know anybody else that had those same goals. Just different things but really, they have been a huge support as far as motherhood [. . .] other moms to just like listen to you talk about your kid when you might not feel like you want to be that one mom talking about your kid all the time, you know. So there’s just so many elements, so many benefits to having a group of likeminded women around you, or just with other women around you. So that was a really beautiful experience and gift that I’ve had, for me personally, has been being in like, a mom support group. And then you know, sometimes we still have the, as they will call baby blues back then, but it’s postpartum depression and trying to deal with multiple children and the newborn baby and then you know, you got this going on with yourself. It can be overwhelming and that’s when things can take a turn for the worse. So [organization name] came about and I work with [names]. And so it was just kind of designed to give the parents the tools and information that they needed to help them cope.
Financial aid and security	That I find a job real soon I always said that I want to be like, financially stable enough that I can look off into the distance when I pump my gas. And that was a joke, and nobody laughed [. . .] No, I’ve always, that’s one thing that I always thought was like, I made it, if I cannot have to, like, watch the little thing when I’m pumping my gas. Like, okay, I made it, you know. But like, if we’re talking about, like, physically, for myself, a big part of my goal is, I guess, remaining like, financially secure or like just being in a position monetarily, that if somebody in my family needs me, or if I, for whatever reason, have an emergency that I can, you know, care for, care for myself care for my family, and never burden anybody with my. . .whatever, spiritually, emotionally monetarily, like making sure that all of those things are aligned and in place.
Disaster preparedness	I’m a huge preparer like, I’m always like, trying to stay ready, so I don’t have to get ready. And that’s just kind of part of my way of being, I don’t, I’ve always kind of been like that. And I feel like that is a big part of my M.O, like, that is just a huge hope for myself a huge hope for, you know, I guess it just kind of entangles with my hope for my family is that I’m in a position where I’m prepared for, you know, things that happen in my life. Just being sure that there’s a plan that we know what’s going to happen, and they’re not just, you know, out here, you know, just trying to figure things out, like me and my sister had to. Those are my biggest hopes for my family.
As it relates to abstract goals
Self-improvement	And it was basically teaching you how to read to your kids and help other people learn how to read. So it’s kind of helped me build confidence in myself to help other people. That I’m that I will stop letting fear or my past rule my future. That’s one of my biggest things in it, it’s just not a hope it is reality.
Fulfilling their purpose	So I guess that is, for me, my biggest hope would be to be aligned with God, aligned with my Creator, and walk into the path that I’m supposed to be walking to, you know, fulfill my purpose, because if I’m not good for me that I feel like I can’t really be good for the people in my life or for anybody else. I guess, um, for the most part, my biggest hopes for my family are pretty similar to the things that I hope individually for myself. Um, I would say just having consistency, stability, balance. Also just like living authentically, as like, close as we could be, to like our most natural selves.
To be healthy	But also to maintain good health. Cause, you know, as African Americans, as they say, but I say I’m Black and human, we don’t tend to see doctors, so mainly just good health. And plus I just decided, you know, I didn’t want to be carrying all that weight. And so I started to be more active in my own care. And what I was gonna put in my body, you know? And so we just always had to be conscious about nobody really care for you more than yourself.
To be at peace	I just really wanted to, again, be healthy and at peace. You know, I really like peace.
As a caregiver
To be a good role model	Just being a mother that I didn’t know and just saying that I can receive help, and actually take in help. And so, when I got pregnant, and I had my son, one of my biggest one was just that I could do it, even if it was on my own. My mom died when I was young, and there was really just no plan for what would happen to me and my sister. And I’ve always just been, like, hyper vigilant about having everything in order, like, as soon as I was pregnant with my twins I think my hopes is to better myself. Like the better so my kids like should be able to see like, no matter what you can further yourself in school. And you could do what you put your mind to.
To be a good caregiver	I was a breastfeeding mom, that was really difficult, really, and it was really for hope for healthier outcomes for my child. I want to be the best caregiver I can be. I know I want to become more patient with kids just because you know, you have to have patience with kids.
To teach their children	I try to empower them with knowledge. I mean, it’s actually, as a mom probably been my biggest kind of obstacle to overcome is just kind of dealing with some of the trauma of that, and the grief of that. And I try not to project that onto her. But it is a major thing for me is just making sure that, you know, she has a healthy vision for what just kind of a mature outlook on what life is in case I might not be here tomorrow.

Factors Influencing Caregivers to Seek Medical Care

One of the goals of this community research was to ascertain community members’ (specifically caregivers’) impressions of medical care for their young children, including factors influencing families to present to care. Caregivers noted that they trusted and listened to advice of other family members (including caregiving partners) on taking care of their children, including recommendations for when to see a medical provider. Additional motivators to seek care for their child were if a caregiver had a specific concern about the child, obtaining vaccinations, as well as ensuring their child was growing appropriately and meeting developmental milestones. When the conversation turned toward barriers in care, historical racism and its impact on present-day medical practice was discussed by half of the people interviewed. Trust, or the lack thereof, was frequently highlighted as reason for (in the setting of high levels of trust) or against (in the setting of distrust) seeking care,

“I feel safer for her sake, when it is a doctor of color. Because we’re dying in the care of these doctors, black women are dying, their babies are dying. And it could be prevented. And so I have trust issues when I see a white face. [. . .]I don’t know you and I don’t think that you care.” (0917_1R).

Racial concordance and its positive impact on perceptions of healthcare provider trustworthiness was a common topic for many caregivers. Separately, representation as it relates to positive role modeling was highlighted as crucial, with 1 caregiver noting that increased representation was needed. Additionally, within the context of conversations on the need for racial concordance and representation, multiple comments were made by caregivers that people from African American communities do not routinely see the doctor, “But most of the African American community don’t go to the doctors. They don’t.” (0915_3T) (Table 3).

Table 3.

Factors Influencing Caregivers to Seek Medical Care.

Code	Quote
Motivating factors
Advice and encouragement from trusted friends and family	I mean, they always made sure I went to my doctor’s appointment. There wasn’t a time that I didn’t go to the group that they didn’t be like [0915_2R], did you go to your doctor’s appointment? [0915_2R], do you have a doctor’s appointment coming up? Like they were always into it, like there was making sure that I was going and handling what I needed to with her when I was pregnant with her. My mom really just tell me what’s best. What’s best for him. And I’ll like, you know, sometimes I agree, sometimes I won’t. But when I know she’s right, then that’s when you know, she influenced me to, to do better for him. And tell me what’s right, what’s wrong, really. Yeah, I hear [partner name]. I get his input. Yeah, he’ll throw out his concerns. I’m not gonna lie. We make decisions together as far as [child name] health.
If having a specific concern	I call my pediatrician, just like, listen to this. And [. . .] she gave me this list of things that I should be looking out for, if I’m having some sort of concerns about like, his, like, his neuro health, you know, and, and he’s fine, he doesn’t have any of those. He’s fine. But, you know, she sat there and listened. Like, we had a whole meeting even during Corona. You know, she was like, well bring him in. And, you know, we put a blanket on the floor and watched him crawl to stuff. Well I know calling in for a doctor for emergency reason. I had called in before and I was just basically just kind of asking her what can I do? You know, for because at first I had cut my daughter nails, but then I had clipped her, her, her skin with it. So it was bleeding. And I just wanted to know what I should do.
Ensuring growth	And I hope that they take inventory on his growth. I want them to pay close attention to his progress, take note of where he needs to be at what age.
Obtaining vaccines	Some of them I didn’t I didn’t give him some his vaccination shots I gave a lot of them. But to just make that time, if, you know, nobody wants to get a shot, I know I don’t, and least of all babies, you know, just to keep them as comfortable and happy as possible throughout their whole visit.
Barriers
Historical racism and representation	They just trying to make some money and they using poverty to make more money because black people really got like, they get on that Medicaid. And they go down there and doctors be giving them all them pills and so like is they just susceptible. Question them, definitely question them. Like you know, we got history where your doctors mess up, you know what I’m saying? They do things wrong on purpose and all type of stuff. So question them, like there’s a bad history there, so. We have to have a black doctor, like we’re not okay with not having a black doctor or a doctor that is not a, you know, a champion and cheerleader for black lives. Like, if that is not something that is in your resume, we are not going to see that doctor. Oh, and also a face that she can relate to. Um, she’s a baby girl of color. And so I feel like there needs to be more representation. There’s an issue with racism within the health care system across this country.
Trust (or the lack of it)	She needs to feel comfortable with whoever she’s going to the doctor with. Because I remember being young, like 10, 11, and I feel sick, but I’m not telling the doctor how I feel, so I want her to be comfortable with whoever she’s with, to be able to tell them how she actually feels. I just have really strong beliefs about it. Because I’ve experienced that being in the Avondale community. I’ve actually experienced younger women who were in their early, might be in their late teens, early 20s and they’re scared to ask their pediatrician for help. And I be like, you could ask them, and they’ll have you watch a movie for a pack-n-play, somewhere for your baby to sleep. But they’re so scared that 241 KIDS getting involved, that we really need to reach out to them and let them know that 241 KIDS ain’t got to be called. They’re just here trying to help you.
Negative past experiences	Because I know just about everybody that I interacted with her, pretty much don’t even go to the doctor anymore. So like I said, it just be it could be the doctor could be one bad experience. When that’s all it takes them some time is one thing, you know? What I can, for prime example for myself, um, it’s scary is number one.
System issues	And then you know, with insurance, it’s hard to find a doctor and stuff like that. So people just say well, if I’m walking and talking then I’m okay. Like, not to be. I understand, and I don’t know how true it is, I understand with certain insurance that patients have, their doctors are only limited to like 10 or 15 minutes with the patient. Well, you know, most, I guess most doctors go in to it like trying to change the world want to be a good person, you know, they can’t really change the policies.

What Caregivers Desire in a Medical Home

As conversation turned to medical homes, a distinct trend was observed in which primary care practices and their providers were discussed as separate entities. Regarding primary care offices, common characteristics expressed by caregivers as desirable included flexibility, supports available within the clinic, to be treated equally, as well as the importance of establishing and maintaining trust. There was significant variation when discussing the desire for flexibility, with some caregivers hoping for scheduling flexibility in terms of appointment availability, having continuity with providers, as well as being able to schedule multiple family members together. Others desired flexibility in terms of telehealth and home visitation programs. An equal amount of variation amongst caregivers was noted when talking about ancillary supports for families in clinic. Most commonly, caregivers spoke of in-office screening services (ie, child development and parental postpartum screening) and the provision of anticipatory guidance. Other supports discussed included financial assistance (including public nutrition benefits programs, gas cards, and taxi credits), childcare for non-patient children during visits, and having a non-physician support person in waiting rooms who could be an advocate for parents experiencing struggle. This last suggestion was in the context of caregiver reluctance to disclose social and material needs for their child that they are having difficulty meeting, with 1 caregiver specifically giving the example of fearing child protective services being called.

“They’re so scared that 241-KIDS [Child Protective Services] is gonna step in, we need to figure out how we can have someone to be able to talk. And for these people to be able to trust them with telling their pediatrician if they need help. [. . .] I think they need an advocate like someone that they feel that they can feel comfortable to tell.” (0915_2R).

In alignment with previously discussed commentary on racism and distrust, caregivers are additionally seeking a medical practice that proves trustworthiness through shared decision making with caregivers, avoiding paternalistic medical approaches, and treating all children equally regardless of background or demographic, “And then I had to do a check with friends, other mama friends. And most of them my white peers are like, no. Like, there was no pediatrician ever, ever suggested that [fluoride varnish] to my, to my baby.” (0917_1R) (Table 4).

Table 4.

What Caregivers Desire in a Medical Home.

Code	Quote
Flexibility	They recently just told me that they have some type of video call thing we can call in. I’m like finally, finally. Finally, finally, because where was this at when she was born in 2017? Instead of coming in I could just talk to them over the phone. Um, well, even if, you know, I didn’t have insurance for him, at least, you know, they’ll be understanding. You just tell me to bring it next time, but they will they will have to bill me for that visit. But you know, my insurance will be covering that visit. Years and years ago, centuries, decades, they used to have doctors do visits and come to the home. So that would be nice. If they could, you know, probably not even bring it in the home. But maybe choosers could get, I know the clinic is so accessible. It got longer hours and things like that. Or maybe they could come up with a system and they can get chores together, we can pull all these kids at the same time in and getting on one doctor’s appointment.
Clinic supports	If parents can have, you know, get little groups where they could get to meet each other. And then if you got to go to the doctor, and I could watch your five kids while you go. Or you could watch my three kids or something like that, just to make it easier for the parents, then you’ll have more kids come to the doctor. [. . .]they can maybe always call it, you know, the parent pool. Right. I think that’s the other thing, like, um, I had a really good experience [. . .] they did the postpartum depression test on me. So, so for me, it was like a big, because when my other kids, I never experienced that. [. . .] So for them to do that test. I feel like that’s a step up in their game. So I just hope something like that or a better transportation system, because I know they do. I’m not sure if Children’s still do, but I know they used to get cabs, but I know cabs aren’t in service no more. So I still believe they do Uber and Lyft. And that’s why I say we have to communicate we have to ask some middle people because you know, it’s always gonna go, ‘we the doctor, we know what’s best’. So you got the doctor up here, and you got the patients here, we need the advocates here and we do have advocates but we need them to be not so much for the doctor and pretty much not for the patient but they do their own research so that they can get the doctors to see that these people is not just a chart. I had postpartum depression. I had it so bad to where I’ve tried to commit suicide three times. People don’t understand to the full extent so maybe we need advocates in there who can sit down and talk to them, and understand their story. Because a lot of people they might just need someone to talk to.
To be treated equally	I would like for every caregiver to provide that for every child, not just him. For every child. When they see that baby for me, they need to give that baby that same kind of attention that they would give [baby’s name]. Not to have favorites to treat everyone just as I see it. That’s what I want. Like, oh, yeah, okay. Just Just checking to see how I’m being treated compared to how you would have been treated.
Practice shared decision making	Now I’m trying to communicate, and I guess I feel like I’m gonna have to start going in with all the printouts in the future [. . .] Insulting my intelligence, and my ability to, to read, and to do some research, and not caring about the well-being of my child. But I need the doctor to not only understand a holistic approach to something before reverting the standard medical treatment, intervention, but also to listen. And do the research. If a parent shows up and says, I’ve done the research for them to actually pay attention to that research. You didn’t ask me you didn’t consult me you didn’t include me. And I don’t feel like any patient should have that poor of care where they just take it upon themselves to do whatever and don’t do whatever. I don’t like I don’t like it one bit.
Establishing and maintaining trust	They’re trusting you, with their mom, with their dad, with their daughter, with their son. If I can trust the doctor then she will be able to feel comfortable and trust her doctor and that it will be a doctor that she can grow with. And not only that, the family is expecting you to provide that quality care for their loved one.

What Caregivers Desire in Medical Providers

There was rich discussion about what caregivers are looking for in their physician. Across all topics, this had the most congruency between those interviewed. Participants desired an interpersonal relationship with their provider the most, where personal investment and familiarity could be tangibly felt, “She remember his name, wow!” (0818_1G); “They can get the doctors to see that these people is not just a chart. This chart in this paper is just that’s not me. I’m a human being I’m a living breathing human being.” (0915_3T). Similarly, having medical providers who demonstrate empathy, compassion, and warmth was frequently discussed and sought after. However, interpersonal skills weren’t the only traits caregivers desired. A provider who is knowledgeable, up to date on current medical recommendations, and prepared for each visit was mentioned by multiple caregivers. Further discussion revealed multiple caregivers had past experiences where their medical provider was rushing, resulting in a negative impact, “And they’re just you know, like you said everything is so rushed. You know a lot. ‘I’m so busy’. Yeah, whatever. I’m not trying to hear it. I’m busy too.” (0909_1B). One final common theme was the desire to be listened to without perceived judgment, most notably in the context of caregivers discussing home research or hesitancies around suggested treatments (ie, vaccines).

“And my pediatrician [. . .] is always kind of here to listen, even when I, I truly feel like I’m buggin. But, you know, she never makes me feel like what I’m saying isn’t valid,” (FG, CG1); “when someone shows with some information from doing a lot of research, that they don’t, that they’re not dismissive.” (0917_1R).

Less common, but no less important, hopes for a primary provider include finding one who has a clear passion for their job, as well as somebody who is transparent and direct in their communication (Table 5).

Table 5.

What Caregivers Desire in Medical Providers.

Code	Quote
Continuity	Well, because, um, [other child] was the only one that had this, like, he had the same doctor until he was three. Now it’s like, he sees other doctors, but [baby] has always seen, she’s always seen different doctors. And I asked, and they said that’s their new protocol, I don’t know, like protocol or something that, you know, they just switch doctors, not every doctor can see the same child. And I was wondering why [. . .] I just really want somebody that can be on call, you know, and I can have that really, relationship with. I feel like if you switch doctors, because I was really big on this when I was pregnant with her, not everybody know what your body’s going through. So if you’re stuck with one doctor and that doctor has been with you through other kids, you know what I’m saying, other pregnancies, you know what I’m saying, to the newborn. You don’t want to switch up because that doctor don’t know that baby as well as the other doctor. That it will be a doctor that she can grow with who will not to be her pediatrician. But will can be her doctor as she goes into adulthood.
An interpersonal relationship	Like these little doctors actually care, like, you know what I’m saying. They take the time to talk to them. They play with them. They notice how they act. They noticed that, Oh, she’s feisty. Oh, she’s busy. She’s just inquisitive [. . .] I love that. I love that. I really do. I love that. [. . .]I don’t want them to just come and take his temperature and listen to his heart and send us home, basically. They’re really putting effort to get to know [baby’s name]. They’ve taken that time. They remember them. We’ve had like a wonderful experience with [clinic name] and have felt a very great like connection with our doctors. [. . .] And like we’ve had personal relationships already there. But it wasn’t always a personal relationships there because when she was a newborn baby, of course, this would have developed over time through well child checkups inside. So when you look at this chart, this is not my whole life. Asking what I want for her, you know, like, especially in the beginning, when establishing the relationship and asking what kind of care I want for my child. What are my expectations? Check in with me ask me what my expectations are. Um, I would just like for them to treat the baby like it’s yours. Um, it’s real simple. It doesn’t have to be rocket science. Just treat the baby like it’s yours. You know?
Empathy, compassion, and warmth	I hope that they’re friendly, and they are loving and they’re caring. I just feel like every doctor should be a nurse before so they can get that bedside manner down to a science and then when they become a doctor they won’t just brush their patient under a rug and diagnose them and that’s it. Okay, you know, a lot of people, they don’t have compassion, like you said, they, they’re lacking that empathy. And when you’re in the healthcare business, you can’t, you can’t be that person. If they view him as someone that they love and care about, they’re going to take that extra minute. Where as if he is viewed as a number, he will be overlooked. Because I’m a caregiver as well. And I know the time and attention and the patience that goes into every person that you come across [. . .] But all I ask is that you do your best. Do your best to find out, make someone feel as though you care. So you want to find a doctor that’s kind of in between that can relate to things you might be going through maybe they never experienced it but they got empathy for you.
Up-to-date knowledge	So I just I want doctors who are smart, up to date on their information, have compassion, and know how to tap into the proper resources to help a mother achieve what she wants to achieve for her family. If they see something that doesn’t look right, something that I may have missed, I want them to pick up on it and let me know. . .I would like for them to pick up on that as early as possible. Any detection of anything that’s not going right. It is a major priority in our family, like I had you know, health conditions, so does my partner, we want to make sure that we have a doctor that is very mindful of us our, you know, our background. Or that the doctor can, I hope that the doctor will keep me you know up to date with what’s going on with the toddlers and the top of the world make sure that I can keep him healthy.
Not rushed	I’m not asking for a half an hour or hour with you, but I really want you to hear my concerns, really take it in, you know, and like, do something about it. Not when I take the babies to the doctor. I don’t have that anxiety, that feeling of being rushed [compared to when they take their parent to the doctor].
A provider who listens without judgment	I didn’t give a couple [of vaccines] but I wish they just stop making me feel bad about it. . .I just don’t like feeling bad that I chose, you know that I choose not to give my son certain vaccinations and I wish that will change. And she’s like, I’m, I’m not concerned, but I hear you. [. . .] Yeah. Exactly. Cause I’m sure in her head, she’s like, this baby is fine. But she saw that I wasn’t fine. Foundation, because if you can have your support group and your pediatric care, like on the same page or like, no judgment and to really listen to me, and to not just think, oh, every baby does that or every child goes to that but, but I don’t have 5 million kids, you know? I just got this one. So um just really the foundation and the listening and the no judgement is really, really one that I love.
Passionate	They have some doctors I can tell you that are, you know, that’s what they love to do. They’re not just in there to say, Oh, well, this is this and this is normal, and all that. And also have a heart, like weed out the ones who are in it for the money and find the ones who care.
Transparent and direct communication	You know I want her to be straight and narrow with me like, “No, it doesn’t” or “Yeah it does. Continue on doing what you’re going.” And so I think if we just really have open discussions with people - and not on the professional level because most people don’t like to do professional level. So if you have open conversations with people that’s not on the professional level, sometimes you can get to people like that. More likely then you know, you bringing in a professional said well, this means you need to go see a doctor and. . .just my thoughts. Well, again, I like for them to tell me exactly what is wrong. You know, sometimes doctors tend to tell you, you know, I ain’t gonna say I don’t know every big word that they talking about. But some people just need things simplified. So I’m like when you will go see a doctor, that they will explain you in layman’s terms well this is what’s wrong. This is what we gonna do. This is when we can have it done. Things like that, versus well we gonna throw our list out here. And we’re going to see, and then you walk out of there you feel worse than you did when you came in. But that’s all, I just really want them to just give me a final answer or say it could be a number of these things. That’s it.

Discussion

By eliciting the views of caregivers in our community, as well as elevating their voices as vital to any improvement effort, we hope to build on existent literature regarding maternal and infant health. Specifically, the caregivers in this study reveal rich hopes and desires for their infants, their families, and themselves while highlighting opportunities for strengthening and enriching the primary care relationship between families and practices. This study is not the first to identify mistrust as a leading barrier between racially marginalized patient families and the medical field. However, caregivers in our study offered suggestions to combat such mistrust through empathy, fostering familiarity and interpersonal relationships between provider and patient, as well as reducing instances of perceived judgment when caregivers bring up questions or concerns. The caregivers interviewed were primarily from under-resourced communities, and this impact could be seen across all parts of the interview—from hoping or needing financial security for themselves and their families, to desiring concrete support services from the medical practice they attend. The types of concrete supports desired were variable by interview, highlighting again the need for medical settings to be familiar with the resource barriers of their patients and families specifically, as well as the needs of the surrounding communities more broadly.

The attention to maternal and infant health outcomes in the US continues to grow in academic, clinical, and community spaces, as well as the intersections of these spaces. This study highlights that caregiver voices provide a unique perspective in needs assessments, and improvement efforts. Caregivers tell a story that other data cannot adequately represent. Our findings closely correlate with a recent 2022 Commonwealth report which gave voice to pregnant person’s desires regarding their prenatal care. ²⁴ Although both studies are small in sample size, the congruency between various interviewees is important, particularly when considering policy change and impact. Potential changes to current care provisions and health policy cannot occur in isolation from patient community needs. Families and clinicians ultimately have the same goal for the children in their care: healthy and thriving babies, and by extension their families. Figuring out how to align expectations and cultural differences, while validating both caregiver and provider expertise, is crucial to facilitating a trusting patient-physician relationship that fosters healthy outcomes. Solutions will require a multidimensional approach, including potential collaboration with insurance groups to change reimbursement infrastructure to allow more time spent with each patient, building representation within community-embedded clinics, partnering with community organizations working to address social determinants of health, and providing additional training to health care providers on cultural attentiveness and empathic response. It cannot be understated that any proposed solution must include community feedback and partnership.

While illuminating, this study does have several limitations. First, our sample size was 10 caregivers within the Cincinnati, OH community. This sample size limits the ability to make aggregate statements regarding the desires and needs of entire communities within a city of this size, even if limiting the scope to certain neighborhoods which are structurally and economically disadvantaged. The generalizability to other communities across the United States is equally limited. These limitations reinforce that centering community voices in improvement efforts should be iterative and individualized to the community in question. Second, interviews were conducted during the peak of the COVID-19 pandemic, which stressed communities inequitably and added additional layers of socioeconomic as well as psychological hardship to people. Ongoing community conversations to identify evolving community needs and priorities as we adjust to the impact of COVID-19 are needed.

Conclusion

Our study centers community voices in primary care—family partnerships, demonstrates rich results with under-utilized research methods via inclusion of community researchers, and highlights problems and potential avenues for solution within the field of maternal and infant health care. We will use the results herein to drive improvement efforts within the Cincinnati Children’s Newborn Collaborative and across clinics affiliated with our work.

Supplemental Material

sj-pdf-1-jpc-10.1177_21501319241253524 – Supplemental material for “When You Look at This Chart, That Is Not My Whole Life”: Caregiver Perspectives to Inform Improved Primary Care Practice and Outcomes

Supplemental material, sj-pdf-1-jpc-10.1177_21501319241253524 for “When You Look at This Chart, That Is Not My Whole Life”: Caregiver Perspectives to Inform Improved Primary Care Practice and Outcomes by Monique Quinn, Allison Parsons, Chidiogo Anyigbo, Alexandra M. S. Corley, Lauren Lipps, Jamaica Gilliam, Julietta O. Ladipo, Caitlin Jee Hae Behle, Desiré Bennett and Carley Riley in Journal of Primary Care & Community Health