Seeking Optimal, Integrated Pediatric Medical and Social Care: A Qualitative, Peer Researcher-Driven Study

Abstract

Objective:

To generate qualitative insights with patients, families, and community partners to catalyze nimble, aligned medical-social care responses.

Methods:

This study employed qualitative and co-design methods. We partnered with 4 peer researchers who interviewed individuals living in Greater Cincinnati with recent experience as pediatric patients or caregivers of pediatric patients. Interviews assessed ways in which health care, human services, patients, families, and communities do (or do not) collaborate to provide medical-social care. Interview transcripts were independently reviewed by an analytic team, inclusive of peer researchers, co-design experts, and pediatric clinicians and researchers. Findings were validated during community discussions, facilitating identification of themes and opportunity areas for intervention.

Results:

Peer researchers conducted 19 interviews (14 English and 5 Spanish). Interviewees included individuals ranging from young adults (recent patients) to older adults with lived experience as caregivers of pediatric patients. Most identified as minority race and ethnicity and lived in socioeconomically disadvantaged Cincinnati neighborhoods. Themes related to structural barriers included 1) services are difficult to navigate; 2) medical and social care are often reactive (or nonexistent) when they could be proactive; and 3) medical and social care could be more closely integrated. Themes related to human factors included 4) medical and social service institutions are often untrustworthy; 5) diversified care teams with shared lived experiences could improve care delivery; and 6) optimal care requires empathy, clear communication, and partnership.

Conclusions:

Patients, families, and community members identified themes and opportunity areas for improving medical and social care delivery. Next steps include the implementation and evaluation of prototype interventions.

Health inequities begin early in life and affect a child’s health and well-being into and throughout adulthood.^1,2 Children from socioeconomically disadvantaged communities face worse health outcomes than those living in more affluent communities.³ For instance, children in low-opportunity neighborhoods are hospitalized for ambulatory-care sensitive conditions twice as often as those in high-opportunity areas.⁴ Given links between socioeconomic disadvantage, opportunity, and structural racism, racial/ethnic inequities follow similar patterns.⁵

Care that addresses both medical and social needs (eg, food, housing, and transportation) could improve outcomes and narrow (or eliminate) equity gaps. Increasingly, social care is being incorporated into medical care plans,⁶ and partnerships between medical and social care systems have shown promise in improving child health outcomes.^7–10 Some health systems have implemented medical-social care integration innovations.¹¹ And yet, logistical, cultural, and financial challenges remain, precluding meaningful progress, particularly for marginalized, socioeconomically disadvantaged populations.¹⁰

We have an opportunity to build better, more integrated care systems and do so with patients, families, and community partners who are too often at the periphery of systems insufficiently aware of and inconsistently responsive to their needs. Co-design, a specific methodological approach, has proven effective for the development of meaningful potential interventions^12–14 that are acceptable, accessible, and equitable.¹⁵ We see such a method as optimally matched to our vision for better, more connected, more equitable medical-social care systems. We, therefore, sought to use such methods to generate qualitative insights with patients, families, and community partners to move toward nimble, aligned medical-social care responses.

Methods

Study Design

This study was part of the Responding to Identified Sociomedical risks with Effective Unified Purpose Project, which was approved by the Cincinnati Children’s Institutional Review Board. Our qualitative study utilized iterative co-design, a method amplifying the importance and relevance of lived experience,^16,17 to move toward prototypes capable of improving medical-social care delivery. We used a phased process: 1) problem framing; 2) discovery; 3) synthesis; 4) ideation; and 5) prototyping. Here, we report qualitative insights emergent from problem framing through early ideation phases (2023–2024). Subsequent phases, including continued ideation and intervention prototyping (planned for 2025–2026), will be discussed in future publications. We report our qualitative co-design approach following the Consolidated Criteria for Reporting Qualitative Research checklist.¹⁸

Research Team and Reflexivity

Our team included pediatric clinicians and researchers (M.J., C.H., M.S., E.Q., L.L., A.H., N.U., A.B.); co-design methodologists (ie, professional designers who provided methodological expertise; J.O., D.V.), and peer researchers (ie, individuals who directed and conducted research alongside academic partners; M.A., M.M., R.P., P.W.). We sought peer researchers who lived or worked in communities at risk for health inequities, recruiting from the All Children Thrive (ACT) learning network. ACT includes dozens of caregivers (eg, parents, grandparents) of children from socioeconomically disadvantaged Greater Cincinnati neighborhoods.¹⁹ Physical and virtual recruitment flyers were distributed to all ACT members; 4 peer researchers volunteered. Three were identified as Black/African American and 1 as Hispanic/Latina. Each had experience interacting with both medical and social care organizations as either patients or caregivers. The co-design methodologists trained peer researchers in peer interviewing techniques and analysis of qualitative data. We compensated all non-Cincinnati Children’s employees for their time.

Problem Framing

We began with a landscape analysis (February–July 2023). This included a literature review and a discussion about medical and social care with ~75 clinicians, parents, and community partners convened during an ACT meeting in May 2023. We used summary points from this community discussion and literature review to frame the project and develop open-ended semistructured questions and follow-up prompts for the peer interviews (Appendix). Specifically, we looked for existing approaches to integrating medical and social care that placed patients, families, and communities at the center of efforts—not the periphery. Questions focused on sociodemographic characteristics; positive and negative experiences with medical care organizations; positive and negative experiences with social care organizations (eg, community agencies, nonprofits); and opportunities for coordination between organizations and care providers.

Discovery

Peer researchers used the interview guide (Appendix) to conduct 19 interviews (September–October 2023) via a virtual platform, assessing ways in which health care, human services, patients, families, and communities do (or do not) collaborate to provide medical-social care. Each peer researcher conducted ≥4 interviews. Interviews were conducted in English or Spanish, lasted 30 to 60 minutes, were recorded, and were transcribed verbatim. Transcripts of Spanish interviews were translated into English for analysis. Peer researchers recruited individuals ≥18 years living in Greater Cincinnati with recent experience (ie, past 1–2 years) as pediatric patients or caregivers of pediatric patients receiving care across any Cincinnati Children’s department. They focused on individuals living in socioeconomically disadvantaged neighborhoods. Peer researchers used purposeful and snowball sampling strategies²⁰; they first contacted known ACT members via phone or email; then, they encouraged participants to recruit others, connecting to those who may not normally participate, methods routinely used in ACT.^15,19 Interview participants were compensated with grocery gift cards. The Institutional Review Board granted a waiver of documentation of informed consent; participants granted verbal consent before beginning interviews.

Synthesis

We next used qualitative analytic methods (in a thematic analysis^20,21 theoretical framework) to generate themes, and within them, opportunity areas amenable to development of prototype change concepts or interventions. Data from discovery-phase interviews were deidentified and names anonymized. We reviewed transcripts for completeness and accuracy. Each transcript was reviewed independently and coded by 1 of 2 co-design methodologists. They then reviewed all codes and defined themes. Coders used an inductive approach, allowing codes and themes to emerge organically; none were predetermined. Coders ensured saturation²⁰ was achieved in the final themes, with each corresponding to codes and quotes from at least 4 to 5 participants’ quotes. The methodologists used Mural (https://www.mural.co/) to manage qualitative data and organize themes. The entire team, including peer researchers, had the opportunity to review results at multiple stages during synthesis.

Early Ideation

The co-design methodologists then identified inherent tensions and motivations in codes and themes; they used problems, emotions, or beliefs that were particularly surprising or remarkable from the data to develop opportunity areas for intervention, change, or innovation. We then held 3 community discussions (May 2024) to validate themes emerging from synthesis, while also providing space for community members to ideate potential interventions to fill identified opportunity areas. The first convening of ~50 individuals was conducted virtually and primarily included health care providers. The second, attended by ~75 individuals, was conducted in person during an ACT learning session. Participants included health care providers, caregivers, and community partners. The third focused entirely on ideation and was held virtually with 6 caregivers and community partners. During each convening, team members shared preliminary themes and opportunity areas with attendees, who helped to refine, affirm, and validate themes and provide additional opportunity areas.

Results

Peer researchers contacted 19 potential participants who all completed a one-on-one interview—14 in English and 5 in Spanish. Interviewees ranged from young adults who were recently Cincinnati Children’s patients (n = 2) to older adults with lived experience as caregivers (eg, parents and grandparents; n = 17). Most identified as a member of a minoritized race and ethnicity and lived in socioeconomically disadvantaged Cincinnati neighborhoods (Table 1).

Table 1.

Participant Demographics

Total = 19	N (%)/Mean
What is your race?
Black or African American	13 (68)
Hispanic	4 (21)
Latina	1 (5)
“I consider myself biracial. Half African American and half Caucasian.”	1 (5)
What is your ethnicity?
Hispanic	5 (26)
Non-Hispanic	3 (16)
Black or African American	6 (32)
American	2 (11)
Other	3 (16)
“I don’t know what that means”
“Isn’t that the same thing [as race]?”
“None”
What is your gender identity?
Female	18 (95)
Male	1 (5)
Insurance
Public	15 (79)
Private	3 (16)
Unsure of insurance provider	1 (5)
Mean age (in years) of participant	36
Mean age (in years) of children (if applicable)	13
Presence of chronic disease(s) in children (if applicable)	11 (58)

Demographic questions were asked during participant interviews. Questions were asked in an open-ended manner, as listed below, without providing multiple choices. Thus, some of the answers below represent verbatim responses from participants.

We identified 6 major themes (ie, results of synthesis, reflecting analysis of participant interviews) and associated opportunity areas (ie, results of early ideation, representing ideas from team members that were inspired by synthesis-phase themes and validated during community discussions). Themes relating to structural barriers to medical-social care included 1) medical and social services are difficult to navigate; 2) medical and social care are often reactive (or nonexistent) when they could be proactive; and 3) medical and social care could be more closely integrated. Themes relating to human factors affecting care delivery included 4) medical and social service institutions are often untrustworthy; 5) diversified care teams with shared lived experiences could improve care delivery; and 6) optimal care requires empathy, clear communication, and partnership. Themes and corresponding opportunity areas, with illustrative quotations, are shown in Tables 2 and 3.

Table 2.

Themes, Verbatim Quotations, and Opportunity Areas Tied to Structural Barriers

Theme	Quotations	Opportunity Areas
Medical and social services are difficult to navigate	“When you choose the option for Spanish, they leave you waiting until they find an interpreter…Sometimes I go with my niece, I tell her, ‘Make my appointments for me, but in English, because they help you quicker.’” [ID#10, Spanish] “Do not send me to a community partner where the waitlist is 2 years long, and you knew that before you gave me the information. I need real resources who are gonna…act now.” [ID#17, English] “To be able to access [care] as a new patient, I have to be, I think it’s every month, a certain day, trying to call to see if anyone canceled or there is space to be able to add him again as a patient.” [ID#6, Spanish]	• Proactively include community health workers or community navigators in care processes • Transportation shuttlers or rideshare/taxicab vouchers to access medical or social services • Ensure resource and contact lists are routinely, regularly updated • Provide educational tools like an interactive video series or a training module for parents and caregivers who are new to navigating the health care system
Medical and social care are often reactive (or nonexistent) when they could be proactive	“We were only briefly engaged with one community partner…And I wish we had been engaged with more…But I didn’t know what was out there. I don’t feel like I was ever referred to, you know, what was out there…except for the one program.” [ID#4, English] “[A] bad experience I had with health care…flat out, just not…being accessible to the things that I needed, you know, just kinda being pushed off to the side, and nobody act like they even cared. And it was like, I’m calling. I’m doing my due diligence on my end, and it just felt like to me at that time, nobody cared, you know.” [ID#5, English] “[Medical and social care should improve by] working on follow-ups and just checking in on the services that the families request for and checking to see…have their needs been met? Is there anything more that could be done? Do they still need help?” [ID#14, English]	• Liaison in the hospital that works with social service organizations to connect patients • Make sure information and resources are available in multiple languages • Before providing a referral, ensure the patient has transportation and the ability to contact the service or provider • Periodic check-in calls with patients and families with significant barriers to care
Medical and social care could be more closely integrated	“If I could get everything that I needed help with, with just going to Children’s for that medical [need] and get everything that I need there, I would be comfortable. Or if I went to one of the community partners and I needed help with food, but I also now need help with medical, and I need help with transportation, and they were able to provide everything that I needed there under that one roof.” [ID#11, English] “If I go to the hospital, and I’m there, my child has an appointment, but I also needing help with food, clothing, if I mention this, they can have someone come in and talk to us about that.” [ID#13, English]	• Invite volunteers from social and community organizations to set up a table or visit waiting rooms to share resources and information with families • Community meeting spaces in the clinical setting; pop-up clinics in community settings • “Opt out” policies that destigmatize using social care benefits by acknowledging that everyone has needs and stands to benefit from services such as mental health support, peer support, or food support

Table 3.

Themes, Verbatim Quotations, and Opportunity Areas Tied to Human Factors

Theme	Quotations	Opportunity Areas
Medical and social service institutions are often untrustworthy	“One time…I was at my [primary care] doctor for a physical. And I asked him, could we also do my annual STI testing, and he kinda had like an attitude about it like he didn’t even wanna do it. And his questions were like very judgmental. He didn’t even thoroughly go over everything. And when I got the results like he didn’t even explain it to me so kind of just felt kind of like a waste of time, almost like I could have just gone back to the [walk-in] clinic.” [ID#2, English] “It’s a lot of information we’re not given as African Americans, that our other counterparts are given, and they just expect us to know it. Medical experts expect us to know this information without teaching us, not paying attention to the fact that we were held back for 400 years.” [ID#16, English] “[If you had a negative] experience at this hospital, who’s to say that’s not going to be your experience at any of these other hospitals? So, it never even really crosses your mind to go somewhere else for care…That leads to people neglecting their health, which can sometimes be generational.” [ID#1, English]	• Normalize receipt of help by changing language on social needs screening questionnaires and/or training clinical team members • Ensure adequate information available on local resources that provide services to children • Certify a person or a team of people who can explain and clarify the rights of the caregiver during clinical visits
Diversified care teams with shared lived experiences could improve care delivery	“Sometimes the interpretation is different than what you want to say. Well, I understand a bit of English, not 100%, but I do understand, and many times it’s happened to me that I’m saying one thing to the interpreter, and he’s saying something else.” [ID#9, Spanish] “Bringing in this extra person [i.e., community health worker] who brings an element of diversity and who has knowledge about these things that the family might be struggling in, it gives them the sense of hope. Like, oh, okay, somebody sees me. Somebody cares.” [ID#1, English] “[What would] make a good visit…I think just like being welcoming overall…It’s also nice to see diversity as well, too.” [ID#3, English]	• Give patients the option to state their preference for care extenders (eg, community health workers) who understand and share aspects of their identity, including race, gender, culture, etc. • Have cohort of care extenders who are bilingual • Diversification of care teams and patient-family advisory boards • More consistent use of interpreters in scheduling and completing visits • Career pathway programs for those underrepresented in medicine
Optimal care requires empathy, clear communication, and partnership	“When you go to an appointment and you get good service. I mean, if you understand me, that they understand you, that you can communicate well with them.” [ID#7, Spanish] “[There should] be easier access to make appointments in Spanish for the Hispanic community because, so far, in my experience, it has been easier to make them in English than in Spanish.” [ID#8, Spanish] “[A good experience] means that I’m getting treated like a human and not a number…or a statistic. I am treated like a human, like I matter, like my experience matters, my voice matters and I’m not just a needy person with my hand out.” [ID#16, English]	• Capacity-building pushing clinical team members to unpack biases and reflect on how they are coming across to patients, talking with patients and families, and listening to their concerns and questions • Have patient-family advocates available to join clinical encounters if desired by patients or families

Medical and Social Services are Difficult to Navigate

Participants shared that, as patients and caregivers, they often are forced to spend hours navigating call systems, arranging transportation, and sitting in waiting rooms to access needed medical and social services. One described, “[I’ve been] trying to figure out how to get a medical card, trying to figure out how to get vouchers, having to go through all of these steps in order to help myself” [ID#18, English]. Participants felt the quality of a medical or social service appointment should be at least equivalent to the sacrifice made to attend appointments. They felt an opportunity cost to receiving care—time and energy spent navigating services. They suggested that medical and social service providers have an opportunity, and responsibility, to streamline care processes to give time back to patients and families. Corresponding opportunity areas included strategies to ease navigation between medical and social services (eg, increasing community health worker [CHW] presence, transportation from medical to social care services).

“Don’t Make Me Ask.” Medical and Social Care Are Often Reactive (or Nonexistent) When They Could Be Proactive

Participants repeatedly highlighted how current medical and social care systems are reactive at best; they are reliant on patients/clients to self-advocate and to know how such systems operate. Reactivity could be replaced with proactivity; care providers could acknowledge that many may not know about existing resources. Moreover, patients may come into visits for one “chief complaint,” but the provider may be able to identify additional opportunities for support during the visit. One participant explained, “I’ve been like running into a lot of resources that I didn’t know existed… I know it’s other people that probably didn’t know this stuff exist” [ID#19, English]. Another suggested that providers could ask about needed supports: “The doctor [should say] like ‘hey, is there anything that you may need in regards to XYZ?’” [ID#3, English]. An example of when a provider did this well: “She asked me… ‘Now that you’ve gotten your electricity turned back on…do you need help coming up with a plan to keep it on?’… Every step of the way she really called and made sure that I knew what was going on. I was included” [ID#1, English]. An opportunity area based was to establish clinic-based liaisons to social service organizations to more proactively support patients.

Medical and Social Care Are Poorly Integrated

Even when families know about medical and social resources, participants felt access can feel unattainable or like it is being withheld. Participants described that information about resources and services is often poorly communicated or outdated. One offered an idea for medical-social care integration: “I would be super excited to see [social service] organizations at the hospital either just there to share information or trying to share their services they provide to people” [ID#15, English]. Another suggested, “Start passing out more brochures and stuff and seeing how they can help more with the issues that’s going on in the community” [ID#13, English]. Participants recommended marketing with signs, billboards, or posters so people can remember and learn what services exist. Many suggested developing “resource rooms” within clinical settings, modified, more useful waiting rooms where patients could access information about social services.²² Resource rooms could also provide access to public computers, online resource repositories with up-to-date information, and personnel to facilitate connections.

“Is This a Trap?” Medical and Social Service Institutions Are Often Untrustworthy

Participants repeatedly shared that medical and social service institutions have proven themselves to be untrustworthy. Participants shared that families of color know from lived experience and the experiences of friends and community members that such institutions are often not safe spaces. Black caregivers shared that they put themselves at risk when honestly sharing what they need with their disproportionately White providers. One explained, “People don’t know about the help cause they ain’t asking for it. They hit [on intake questionnaire], ‘Yes, I got food to last until next month,’ when they really probably don’t. Cause they probably think they gonna take the kids or something when they really just trying to help” [ID#19, English]. Participants felt that families are more likely to access supports when they feel safe and confident that disclosure of a risk or need will not result in harm to their family. Participants encouraged clear explanations regarding why social needs questionnaires are used, suggesting that language could be modified to ensure families know that resources such as food pantry items are available in clinics and that the purpose of such screeners is supportive, not punitive.

Diversified Care Teams With Shared Lived Experiences Could Improve Care Delivery

Participants noted that providers in most medical and social care settings do not share the same lived experiences as those seeking care. This lack of congruence (in social identities such as age, race and ethnicity, language, culture, gender, socioeconomic status) can prompt mistrust or strain the provider-patient/client relationship. Families of color see a diverse care team as being better able to address and understand their interests and needs. One participant noted, “It’s important…to have a diverse group of people who are very well-versed in all of these different struggles to be able to provide the care…people need, whether that be like somebody who is very familiar with [specific community organizations], [or] whether that be somebody who speaks a different language” [ID#1, English].

Spanish-speaking participants highlighted the importance of language congruence. Several shared prior negative experiences with medical interpreters, making them more cautious in trusting interpreters to communicate their exact words to providers: “Sometimes, I get an interpreter, and I say one thing, and…he is telling the doctor something else” [ID#6, Spanish]. This participant suggested a solution: “I would like… to find a provider that spoke my same language because it would be easier to be able to explain what’s going on with my son.”

“Don’t Treat Me Like a Number.” Optimal Care Requires Empathy, Clear Communication, and Partnership

Participants were acutely aware of the power medical professionals hold. To diffuse imbalances in power dynamics, participants recommended that medical teams build trust by practicing empathy—taking time to listen to concerns, explain findings and recommendations in detail, and make sure patients’ needs are met. Compassion, empathy, and clarity help patients feel more comfortable as self-advocates. A participant shared a positive experience with an empathetic provider: “They were patient with us, and they were willing to explain things…They took every moment to give me that space to be everything that I needed to be. They let me be emotional… When I wanted information, they were informative” [ID#12, English]. An identified opportunity area included capability- and capacity-building activities where medical and social care providers could gain skills in empathy.

Discussion

In this study, patients, families, and community partners lent their expertise and voice to intervention building blocks that could improve coordinated medical-social care delivery.^15,23,24 Themes focused on structural barriers to, and human factors affecting, medical-social care delivery. Opportunity areas were driven by the recognition that, to equitably improve child health outcomes, it is crucial to directly address racism, enhance our understanding of health equity, and develop concrete actions to address social determinants of health. Moreover, our findings suggest that interventions will be most likely to succeed if co-designed with families and community partners.¹⁵

Patients and families experienced difficulties navigating medical and social services. They spend hours on hold, on transportation to and from appointments, and in waiting rooms. Participants consistently expressed the desire to feel that the quality of appointments was equivalent to the sacrifices they made to attend. Many highlighted mental cost-benefit calculations, comparing the time and energy necessary to navigate services with the potential impact of services when accessed. Providers can honor the sacrifices of patients (and clients), but doing so will require an assessment of the current state, one pursued with patients and families.^15,24 Quality improvement and lean methods may be well-suited to determine where there is value and where there is waste.^19,23 Waiting rooms need not be “wasting rooms”; rather, they can facilitate navigation to the right resource at the right time and place.²²

Many felt valued when current (and future) needs were considered and anticipated by the medical team, when care extended to meet needs beyond a single “chief complaint.” By incorporating social care into medical care plans—a practice known as “social prescribing”—we may be able to more effectively address the breadth of patients’ needs during and after medical visits.^9,10,25,26 This could include both reactive and proactive connections to supports such as medical-legal partnerships, public benefit purveyors, or early childhood educational settings. This could also include connections to resources addressing acute health-relevant social needs, such as provision of food, books, or a ride home. Studies have shown that such medical-social care connections can have positive effects, mitigating social needs and improving health outcomes ranging from child development to acute hospitalizations.^8,9,25,27,28

However, ways to make such connections are not always so clear. History is rife with examples of overt and covert racism and discrimination perpetrated by medical and social service institutions, resulting in mistrust. From Tuskegee to Henrietta Lacks, many have good reason to view offers of help with guarded skepticism,^29–32 especially with continued presence of racism and discrimination in such institutions.^33,34 Black participants felt they put themselves at risk when honestly sharing their needs with clinicians who were disproportionately White. Many alluded to the lasting impact of historical traumas affecting their decisions about accessing care.^29,35 Many also described their perception that the very services intended to help could instead result in being stigmatized, feeling judged, or having a child taken away.³⁶ This prompted many to disengage, or at least not fully engage, with medical care, social care, or both. Many saw prevailing power dynamics as impediments to building and maintaining the trust that was deemed so critical.³⁷ Thus, care delivery improvements will need to be developed in a context aware of historical abuses and aim to address warranted mistrust head-on.

Participants expressed that the highest quality interactions they had with the medical system emerged from meaningful, bidirectional conversations. Many highlighted that medical culture does not always enable these conversations, nor does it ease links to aligned providers in the social sector. Moreover, the discordance of lived experience between patient and provider often hindered such conversations. Concordance between patient and provider has been linked to better health outcomes and higher value care.³⁸ Several participants saw CHWs as approachable health care figures, more capable of inspiring trust and empathy, and more effective at linking to social services.^39,40 Several studies—across populations and regions—suggest that deployment of CHWs as care extenders positively affects population health, experience and cost of care, and health equity.^11,41–43 Still, we have much to learn about how to best leverage unique skillsets of CHWs and how to recreate those skillsets in other members of the care team.^37,44,45

Effective interventions are likely to emerge from co-design methods and consistent inclusion of peer researchers.^15,24 Such an approach builds empathy, considers divergent possibilities, and prompts learning through action, leading to deeper insights and better, more sustainable solutions to complex problems.^16,17 For example, when co-design was utilized to construct interventions with a rural perinatal population, perceived racism and discrimination in the health care system were identified as common barriers to accessing care. Community members identified integrating peer support networks into health care teams and co-locating services as interventions to improve access.¹² A similarly constructed study pursued with Black patients with lupus found that discrimination and poorly coordinated care delayed diagnosis and hindered treatment adherence.¹³

Co-design methods acknowledge that those who experience the system as patients, families, and frontline care providers may have the best solutions to the problems we seek to solve. Co-design accelerates a move from traditional qualitative analysis to prototype interventions. Indeed, while many of our thematic findings are consistent with prior literature, we identified novel opportunity areas (eg, standardization of social care provision, innovative roles for CHWs). We did so by blending the creativity of designers and scientific rigor of academic pediatricians with the lived experience of peer researchers and study participants. Innovations in care delivery emerging from co-design could improve patient outcomes, yet effective implementation and sustainability will require financial investments, potentially enabled by advocacy and reforms in reimbursement models (eg, reliable funding for CHWs,⁴⁶ move toward value-based financing^47,48).

This project had limitations. First, we conducted this study in a single metropolitan area served by a single children’s hospital. Our findings may not be transferable to other cities or regions. Second, sessions were only conducted in English and Spanish. We are missing important perspectives from those who prefer different languages. Third, qualitative findings, by their very nature, are hypothesis generating and not conclusive; our findings may have been influenced by biases held by members of the research team. Also, most of our findings reflect the perspectives of patients and caregivers; future efforts will incorporate the perspectives of frontline medical and social care providers.

Next steps include completion of ideation and a move toward prototyping; both of these phases are underway and anticipated to be completed in 2026. Through further community discussions, opportunity areas will be prioritized based on potential for impact and feasibility. Prototypes will be tested within institutional and cross-community learning networks focused on achievement of excellent, equitable outcomes for Cincinnati youth.^19,49

Conclusion

Achievement of optimal child health outcomes will require bridges between medical and social care systems. To build such bridges, we must address structural barriers and human factors standing in our way. We must also approach the building of those bridges in partnership with those who lead from lived experience.

What’s New.

Medical and social care are often pursued in isolated, unbalanced ways, perpetuating inequitable health outcomes. With peer researchers, we generated themes and opportunity areas for interventions poised to move us toward a better, more connected, and equitable medical-social care system.

Appendix: Interview Question Guide

Demographic Information

1. What is your race?

2. What is your ethnicity?

3. What is your gender identity?

4. What is your zip code?

5. Which neighborhood do you live in?

6. What is your age?

7. Are you a parent or guardian?

8. If you have children (or are the primary caregiver of children), what is their age (or their ages)?

9. Do any of your children have a chronic disease (like asthma, diabetes, sickle cell disease, or depression)? If so which one(s)?

10. If you currently have insurance, who is your current health care insurance provider?

Community Conversation

Please note that all of these questions are based on your personal experiences and opinions. We will not ask you to speak on behalf of anyone else or the community.

Supporting Script (if/when helpful): I will start by asking a few questions about your experience with community partners here in Cincinnati. When I say “health care,” I mean hospitals, medical clinics, or something else. When I say “community partners,” I mean agencies or organizations that provide any type of service, help or assistance to you or your family, or to other families in your community. This could look like support with food, housing, health care, education, or something else.

A more specific example of a health care organization would be Cincinnati Children’s. A more specific example of a community partner in Cincinnati would be Legal Aid Society or Freestore Foodbank.

1. In your opinion, what community partners or organizations in your community are providing the best or most trusted services and resources to families?

   1. Which ones are you most engaged with?

2. What resources or services are provided by these community partners to help your family thrive? How are they helping your community to thrive?

3. What has working with them been like? How do you think they could work with families more effectively in the future? Do you know if any of them work with health care organizations?

   Supporting Script (if/when helpful): I know that the way community partners are organized and the way that they work together with one another and with health care organizations can be both helpful and frustrating. I am going to ask a few questions to better understand your experiences with accessing or trying to access support for yourself or your family.

4. What does a good experience with the health care system mean for you? Can you share a story about a positive experience that you had?

5. What does a good experience with a community partner mean for you? Can you share a story about a positive experience that you had?

6. What is difficult or obnoxious about accessing and receiving health care? For example, what feels like a waste of time? Can you share a story about this type of experience?

7. What is difficult or obnoxious about navigating and receiving services from a community partner? For example, what feels like a waste of time? Can you share a story about this type of experience?

8. As a patient or caregiver, when you think about accessing and receiving health care, what things make for a good experience or “visit”?

   Supporting Script (if/when helpful): Earlier in our conversation I shared that one of the goals of this project is to better understand how improved coordination between health care providers and community-based service providers would impact the lives of families. The next few questions will be related to this project goal.

9. What role would you like health care providers such as hospitals or doctors to have in connecting you to community partners for nonmedical services like support with food, housing, employment, transportation?

10. How might connecting with community partners from a health care setting be something you’d like? How might it be something you wouldn’t like?

11. What would it look like for your family to have all of its needs met? How might Cincinnati Children’s play a role alongside community partners in helping your family get there?

12. Is there anything else or would you like to share or anything else you think is important related to your personal experience with navigating health care and community resources systems to try and get the best services for your family?

These are all of my questions! Thank you so much for your time today.

Would you like to attend future community conversations as this work moves forward? Would you like to be involved in this work, volunteer, or support these efforts? Do you know others in your community who may be interested in participating in this conversation?