Racial and ethnic and socioeconomic differences in patient experience are prevalent and can negatively impact health outcomes. Our objective was to examine differences in family experience of care in the pediatric ambulatory setting.
We conducted interviews with parents of patients from different demographic groups who had received care at 1 of 3 clinics at a quaternary children’s hospital. Multidisciplinary team conducted inductive and deductive thematic analysis of transcribed interviews. Sentiments and recurring themes were compared within and between racial and ethnic groups, insurance status, and language.
Eighty parents were interviewed. Three primary themes were identified: (1) mitigation of system issues: parents’ mixed experiences with staff or clinicians mitigating system issues impacted their overall perceptions of care; (2) pivotal role of personal interactions: clinicians’ interactions positively influenced family-clinician relationships and offset negative experiences; (3) effective explanations: clinicians’ clear and thorough explanations were crucial in enhancing parent confidence in care. As an overarching theme, discrimination and disrespect by staff undermined trust in care, affecting all aspects of experience. With the exception of explanations, a higher proportion of publicly-insured parents reported negative experiences across all themes compared to those with private insurance. Asian parents with public insurance had the highest proportion of interviews that were mainly negative in sentiment.
Our findings offer nuanced insights into differences in the experience of ambulatory care. Insurance status emerged as an important marker of differential perceptions of care. Our study points to areas for improvement and highlights family-clinician interactions as vital to overall positive experience.
What’s Known on This Subject:
Racial and ethnic and socioeconomic differences in patient experience are prevalent and can negatively impact therapeutic relationships and health outcomes. However, the complex causes of these differences in the pediatric ambulatory clinic setting remain underexplored.
What This Study Adds:
Discrimination and disrespect impacted all aspects of parents’ perceptions of their child’s care. Public insurance status was an important marker for worse care experiences. Our study highlights family-clinician interactions as essential to positive experience and points to improvement opportunities.
Patient and family experience of care is an essential element of health care quality. As a pillar of the “quadruple aim” for health care system optimization, positive patient experience has been associated with improved adherence to treatment plans, reduced health care use, and better safety and clinical outcomes.1–5 Positive experiences with provider communication in particular are linked to improved outcomes.6,7
However, persistent sociodemographic disparities exist in patient experience with regard to race and ethnicity, primary language, and insurance status.8–20 Factors associated with disparities in both adult and pediatric populations include patients not feeling understood, clinicians not communicating well nor spending enough time, and clinicians’ lack of culturally effective care.13–15,21,22 Racism and clinicians’ implicit biases may also play a central role in affecting patient experience.22–24
Most studies of experience focus on quantitative data from patient experience surveys that provide only a glimpse into the patient’s perspective. Additionally, patient experience studies to date have not typically taken into account the intersectionality of patients’ identities that may affect experiences of care. Recent work has emphasized the importance of using intersectionality as a framework in health care research to ensure health equity.25–27
This large qualitative study aims to better understand how different families experience pediatric outpatient care. We explore the perspectives of families on the basis of multiple facets of identity to capture nuances of experience. Findings from this study may inform the implementation of well-targeted and effective quality improvement initiatives to ensure equitable care.
Methods
Semi-structured interviews were conducted in-person in a designated area with parents or guardians of patients who recently received care at 1 of 3 outpatient clinics (primary care, medical subspecialty, and surgical subspecialty) at a quaternary freestanding children’s hospital. Eighty interviews were conducted from July 2018 to January 2019, ranging in length from 40 to 60 minutes. Parents were recruited from different racial and ethnic groups, insurance status, and language. Numbers of interviews across our primary characteristics of interest were designed to achieve meaningful dimensions of thematic saturation28 and reviewed as the study progressed.
To ensure equal representation of diverse participants, we used purposive sampling to recruit 19 Asian (A), 18 Black/African American (B), 13 Hispanic and English-speaking (LE), 12 Hispanic and Spanish-speaking (LS), and 18 white (W) parents, with balanced representation across the 3 clinics and among insurance status [public (PI) and commercial insurance (CI)]. Parents of patients age 17 or younger were eligible if the patient had visited 1 of the clinics in the previous 3 months, and had at least 1 additional visit to the hospital system in the previous year. Exclusion criteria were as follows: parent <18 years old; did not speak English or Spanish; was currently or formerly employed at a hospital or in a health-related field; their child died; or their child was a ward of the state.
Eligible patients were identified via the electronic data warehouse or through the clinic. Parents were sent a letter describing the study. One week later, a research assistant contacted the parent by phone or E-mail to assess interest and conduct preliminary screening using a standard protocol. Parents were also recruited by research assistants during clinic visits. Before the interview, participants completed a form with questions about their child’s sociodemographic background including race and ethnicity, insurance status, and child’s health. All participants gave written informed consent.
A semi-structured interview guide was developed on the basis of previous literature and patient experience survey data to explore experiences of care and assess parent preferences for and expectations of care.29–32 The interview guide was not formally pilot tested but was reviewed and edited by members of the research team and iterated in the field. Parents were invited to reflect on their experience during the specific visit as well as their general and typical encounters with the hospital system. Interview questions covered accessing care, multiple dimensions of the clinical encounter, and overall perceptions of experience and care received.
Interviews were conducted in-person by 7 members of the study team (E.Y., P.W., R.P., P.H., S.B., E.G., E.M.). Interviews with Spanish-speaking parents were led by team members who are native Spanish speakers (E.G., E.M.). Interviews were audio-recorded and transcribed verbatim. All Spanish interviews were translated into English by a professional translation service.
Parents received $50 compensation for their participation and a complementary parking or subway pass.
An inductive and deductive thematic analysis approach was used to analyze the interview data.33,34 Inductive analysis allowed for the emergence of novel themes, whereas deductive analysis explored themes drawn from existing literature. This “hybrid” approach led to both the contextualization and expansion of themes from previous research.35 NVivo 12 software aided data management.36
Analysis was undertaken by a multidisciplinary team including clinicians, a qualitative researcher, and research assistants. First, open coding of transcripts was performed by 3 team members (P.W., P.H., G.Y.) to identify initial codes. A priori topics from the interview guide informed code development, and new codes were added inductively. A preliminary codebook was developed, with a detailed description of each code (P.W., P.H., G.Y., D.L., S.T.).37–40 After over 2 subsequent rounds of coding, the analysis team refined the codebook until consensus was reached that codes captured all salient ideas in the data. All interviews were then coded independently by 2 team members and compared to ensure consistency. Coding differences were discussed with the study team to achieve consensus.
In the interpretation phase, codes were categorized into emergent themes.41,42 Mapping and interpretation across these emergent themes led to the identification of final, higher-level themes. Themes were refined among the entire research team and, lastly, reviewed against the original transcript data to ensure we had achieved thematic saturation.
As a final stage of analysis, data comments were coded for sentiment (positive or negative). Each interview transcript was also analyzed for overall positive or negative sentiment. The distribution of themes and sentiment across different racial and ethnic groups and insurance status were noted.
This study was approved by the hospital’s institutional review board.
Results
Eighty parents participated in interviews; participant demographics are shown in Table 1. Thematic analysis of the interview data identified 3 primary themes that were mediated by an overarching theme of “discrimination and disrespect” which impacts every stage of the care journey (Fig 1). Themes are described below, with additional illustrative quotes presented in Table 2. All quotes are identified by: race, ethnicity, and language (A/B/LE/LS/W), insurance status (PI/CI), and unique participant identification number.
Themes contributing to perceptions of care experience. This figure illustrates the way in which themes contribute to the patient or family care journey. Experiences navigating the care system before the visit, when considered in combination with personal interactions and explanation during the visit, result in the overall patient or family perception of care. Respect and discrimination is an overarching theme that affects all aspects of the care journey, setting expectations on the basis of previous experiences which are reinforced or ameliorated during subsequent experience. (Key: blue rectangle = theme identified from interviews; gray circle = other factor; green triangle = resulting perception of care).
Themes contributing to perceptions of care experience. This figure illustrates the way in which themes contribute to the patient or family care journey. Experiences navigating the care system before the visit, when considered in combination with personal interactions and explanation during the visit, result in the overall patient or family perception of care. Respect and discrimination is an overarching theme that affects all aspects of the care journey, setting expectations on the basis of previous experiences which are reinforced or ameliorated during subsequent experience. (Key: blue rectangle = theme identified from interviews; gray circle = other factor; green triangle = resulting perception of care).
Participant Demographics (N = 80)
| Public Insurance | Private Insurance | Total | |
|---|---|---|---|
| Asian | 8 | 11 | 19 |
| Black/African American | 14 | 4 | 18 |
| Hispanic/Latino (English-speaking) | 5 | 8 | 13 |
| Hispanic/Latino (Spanish-speaking) | 10 | 2 | 12 |
| White | 9 | 9 | 18 |
| Total | 46 | 34 | 80 |
| Public Insurance | Private Insurance | Total | |
|---|---|---|---|
| Asian | 8 | 11 | 19 |
| Black/African American | 14 | 4 | 18 |
| Hispanic/Latino (English-speaking) | 5 | 8 | 13 |
| Hispanic/Latino (Spanish-speaking) | 10 | 2 | 12 |
| White | 9 | 9 | 18 |
| Total | 46 | 34 | 80 |
Themes and Subthemes With Sample Illustrative Quotes
| Theme | Subtheme | Illustrative Quotes: Positive Sentiment | Illustrative Quotes: Negative Sentiment |
|---|---|---|---|
| A. Discrimination and disrespect | None | “The staff there, they are different just like we are. So we look at the faces of the staff, they have different backgrounds and diversities. So I feel like, you never get that feeling that you know, you’re being treated differently because you may not be the same as the person who’s treating you.” [B/CI/410] “[The physician] was very patient, and she was very nonjudgmental, you know. And like I said, she answered all of our questions. And then she, you know, takes the cultural aspect into consideration as well, you know, discussed like different cultural preference.…So it was good.” [A/CI/5788] “[The physician] was great and she said, “Everyone is working really hard to address you correctly.…She even said, “Please forgive me if I say she,” or she is like, “Because that is how I’ve known you.” And [the patient] was like, “I know. I get it.” She was like, “My mom does it all the time. I’m totally cool.” [W/PI/469, with reference to her child’s change in preferred pronouns.] | “Like when I say I don’t speak English, and I try to explain it in Spanish, I see like an angry face. One time I even saw the secretary throw some papers.” [LS/PI/165] “One time, when [the patient] was small, it was his doctor. I gave my daughter a sip of coffee. [The physician] goes to me you’re a bad mother; I’m like excuse you, in my culture we drink coffee [starting as children.]” [LE/PI/765] “[The nurse] asked, “Do you need–What language do you need for immunization” and I say, “Oh, Vietnamese.” And my daughter asked me why are they asking me that. And I said, “Because sometimes because they are American, sometimes you have [an] accent or you look different and they think you [don’t] speak English.” That happened, but I’m not upset at [the nurse]. But sometimes she needs to be patient with my daughter.… I believe my daughter is [a] patient here, [the nurse] already knows where she comes from, what language she is speaking. She [doesn’t] have to ask me or her like that when my daughter took [her] time to answer to her. She attacked me, hurt my feelings.” [A/PI/1943] |
| B. Mitigation of system issues | System issues Workarounds Effectiveness of communication Outside clinic visits Value analysis of care | “It’s always easy. I can either–for example, the last visit, I can make the appointment. Or if I didn’t make it, one of the members of the team will email me, say, “Hey, the next one is coming and we haven’t seen an appointment scheduled for [the patient] now. Would you like to know when you would like to come to see us?” [A/CI/5152] “Everything was blocked off. Traffic was gridlocked. [The patient] is screaming and crying in the background. And I called here and I said, “Look, my appointment’s at one o’clock, which it is one o’clock, but there is something going on and the streets are blocked off.” And the person who I spoke to on the phone, wonderful. He says, “You know what? Don’t worry about it.” He says, “We will work you into the schedule when you get here. Just get here safely.” I’m like, “Okay.” I appreciated that. [B/PI/1806] “I mean, quite frankly, I can’t get over how responsive doctors in this facility are to email. And I email doctors regularly because it’s easy to figure out the pattern, and I often hear back within an hour from the doctors themselves.” [W/CI/1460] “Even though the wait time was long and it got on my nerves, [the clinician] made up for it because she was caring.... You know, you put all of that stuff to the back and go, ‘My doctor’s here,’ so that didn’t matter.” [B/PI/2482] | ”And it’s been difficult, like since the doctor was a specialist I had to wait sometimes about six months before I could get an appointment…It gets very difficult.” [A/PI/1392] “They just send you a paper that says referral on it and it’s in the bottom it says 8/21 at 8:40 early in the morning. Like I wish they would’ve called me or asked me, hey, what time works best for you?” [LE/PI/765] “I think the hardest part about it, actually, was if there was a problem, I had a really hard time getting a hold of her assistant.…It was really hard to get a call back from her… it seemed sometimes like alchemy to try and get connected to her.” [W/CI/171] “Maybe that’s what’s the $500-dollar visit for, a measure and weigh. Now is that of value?... Or why don’t we just go and save our money and not get billed?” [A/PI/1502] |
| C. Pivotal role of personal interactions | Interpersonal skills Professionalism Personalization Engagement with child Shared decision-making Valuing parental expertise Perception of stress Depth of bond with clinician | “Even the desk people at check-in don’t necessarily know [the patient] by name, although I think they really do. But they’re warm and inviting, and especially talking with doctors that you know are like world renowned doctors and surgeons who are sitting there with just their legs crossed chatting with you, not in any way sending the message that they’re in a rush. That just feels good and is sort of comforting.” [W/CI/1460] “When [the doctor] arrived, I think she already had some information about why we were there, I think that she tried to be kind, she treated the child, she spoke to him, she began to examine him, and also to the interpreter to see if there was an interpreter, and she began to check my child. And I think she was very specific with all the things she told me, and she examined him and asked the child many things and checked everything. I think she was very good at checking my child.” [LS/PI/184] “She’s always very interested in how [the patient] is doing at school, what subject he likes, what he wants to be when he grows up. She makes us feel special and explores how she can help us more. She investigates if everything is fine at home, if we have food, if we need some help from the government, for something, and everything. She investigates and explores everything” [LS/PI/5030]. “[The clinician] is just very engaging, and [the patient] is the type of kid that asks a million and one questions, again because she is interested in medicine, and so all of her doctors sort of entertain that and go with it and have been really engaging, not to say, “[Patient] shut up” or “I’m not going to answer your questions.” They have always just embraced her curiosity.” [LE/CI/1969] “I think we’re all in agreement. I don’t want to say I make the decision because I’m not the doctor. And I don’t want to say they made the decision because they’re not her parents. So I think we all come into agreement. I mean she makes her suggestion and she says that she strongly thinks that we should do it. Okay. Yes, let’s do it. I’m not going to say, “Oh, no,” unless if I really feel like I don’t want to do it.” [B/PI/1228] “[The doctor] really believed in mother’s intuition, so whenever I was concerned about something and he knew I was always on point, so if I wanted like for her to have an x-ray, if he didn’t feel something was right he would be like, “Alright, because you feel that way we’ll kind of justify whateve, and then he will go with what I say.” [LE/CI/442] N/A “I’m amazed because I’ve never seen a doctor like that, who encourages the child to keep dreaming…, [the doctor] helps me so much. He tells me, he motivates me to keep going with the children because he tells me I’m going to help you, I’m going to be there with you, I’m going to support you he says, so that you can keep going…He tells me, don’t lose heart, keep going in life. I know, I have to fight for the children, they need me. And he’s always encouraging me, telling me not to lose heart.” [LS/PI/801] | “I think his approach was just kind of very harsh. And at that time it was just a very, very sensitive time and emotional time for me, and so what he was saying didn’t make me feel very, very comfortable.... So I think that just who he is and how, maybe just the field that he works in is just kind of that way, cutthroat.” [B/PI/969] “So the doctor came in, asked again why we were there. What was, again, off-putting is that it’s like the didn’t know. I kind of feel, and I don’t know if it’s realistic to sort of have the doctors have an idea of why, if it’s just a regular physical or if it’s a follow-up to something. Just not the details, but sort of an idea of who they’re going to see that day.” [LE/CI/2351] “If they don’t look to ask background questions, like has [the patient] been to camp or blah, blah, you don’t look to find out general about the person, anything particular about the person then I’m not looking to talk to you, because if you don’t look to get to know about [the patient] and her life…how do you know what she is doing and what affects her health if you don’t know about her.” [LE/CI/442] “I would like for her [the patient] to be more involved, because she does pay attention and she does take an interest in this. Maybe involve her a little bit more, ask her what she is experiencing, what it looks like, because I’m not in the bathroom with her all the time, so when it comes to toileting ask the person who is doing it.” [W/PI/1373] “There are other clinics where I feel like we are the final decision makers, but not in a positive way, kind of like, “Well, so what do you want to do?” But I didn’t go to med school, so like I like the partnership of, “Does that work for you? What do you think?” And I think it’s appropriate in certain acute situations for the doctor to be like, “This is the plan” or for a parent to say, “I can’t do that. What else could we do?” But a lot of the time I feel like we’re left with the, “Well what do you think about that?” Well, I think I don’t want her to be sick.” [W/PI/1316] “If I tell you as mother, that this doesn’t sound right, that what you’re telling me is not satisfactory, then try to rethink it…because I’m his mom. You’re seeing him today for five or ten minutes and you’re looking at him as part of a large population, but I’m telling you that I know him and that what you’re telling me doesn’t make sense because his behavior is not following those lines.” [LS/CI/632] “Some [staff members] are usually more like overwhelmed. Do you know what I mean? Like, how, how would you say fluster[ed]? They lose that touch.…They lose ‘that let’s not rush, let’s take time to actually know what’s going on.’ They lose that. It’s their environment.” [LE/PI/765] “For 26–27 years, having a relationship with the doctor, and then he’s gone. And you don’t have another doctor like that. It’s hard to find it. So it’s a lot.” [LE/PI/1025] |
| D. Effective explanations | None | “I think as a parent you want to feel like they’re not sort of holding anything back. And I, for the most part, have that sense. I’m a parent that wants to know sort of more than not…And I think they’re pretty good about it. They all explain the tests…Which for me was very helpful.” [LE/CI/2351] “She definitely answered everything and wanted to make sure that I was comfortable with what was being prescribed for him before we left with it.” [B/PI/969] | “There was 1 doctor that we switched out of because he was not using, actually he was one that wasn’t using like easy terms for us to know and very quick…it was horrible and I felt like I didn’t know what was going on when I left the office and I felt frustrated because here’s my little baby and I’m supposed to like go and get all these tests and I didn’t even know what the heck he was talking about.” [B/CI/359] “[The] doctor told me…“You don’t need it [a test].” But I don’t know why… explain [to] me why I don’t need it. That would be better.” [A/CI/1310] |
| Theme | Subtheme | Illustrative Quotes: Positive Sentiment | Illustrative Quotes: Negative Sentiment |
|---|---|---|---|
| A. Discrimination and disrespect | None | “The staff there, they are different just like we are. So we look at the faces of the staff, they have different backgrounds and diversities. So I feel like, you never get that feeling that you know, you’re being treated differently because you may not be the same as the person who’s treating you.” [B/CI/410] “[The physician] was very patient, and she was very nonjudgmental, you know. And like I said, she answered all of our questions. And then she, you know, takes the cultural aspect into consideration as well, you know, discussed like different cultural preference.…So it was good.” [A/CI/5788] “[The physician] was great and she said, “Everyone is working really hard to address you correctly.…She even said, “Please forgive me if I say she,” or she is like, “Because that is how I’ve known you.” And [the patient] was like, “I know. I get it.” She was like, “My mom does it all the time. I’m totally cool.” [W/PI/469, with reference to her child’s change in preferred pronouns.] | “Like when I say I don’t speak English, and I try to explain it in Spanish, I see like an angry face. One time I even saw the secretary throw some papers.” [LS/PI/165] “One time, when [the patient] was small, it was his doctor. I gave my daughter a sip of coffee. [The physician] goes to me you’re a bad mother; I’m like excuse you, in my culture we drink coffee [starting as children.]” [LE/PI/765] “[The nurse] asked, “Do you need–What language do you need for immunization” and I say, “Oh, Vietnamese.” And my daughter asked me why are they asking me that. And I said, “Because sometimes because they are American, sometimes you have [an] accent or you look different and they think you [don’t] speak English.” That happened, but I’m not upset at [the nurse]. But sometimes she needs to be patient with my daughter.… I believe my daughter is [a] patient here, [the nurse] already knows where she comes from, what language she is speaking. She [doesn’t] have to ask me or her like that when my daughter took [her] time to answer to her. She attacked me, hurt my feelings.” [A/PI/1943] |
| B. Mitigation of system issues | System issues Workarounds Effectiveness of communication Outside clinic visits Value analysis of care | “It’s always easy. I can either–for example, the last visit, I can make the appointment. Or if I didn’t make it, one of the members of the team will email me, say, “Hey, the next one is coming and we haven’t seen an appointment scheduled for [the patient] now. Would you like to know when you would like to come to see us?” [A/CI/5152] “Everything was blocked off. Traffic was gridlocked. [The patient] is screaming and crying in the background. And I called here and I said, “Look, my appointment’s at one o’clock, which it is one o’clock, but there is something going on and the streets are blocked off.” And the person who I spoke to on the phone, wonderful. He says, “You know what? Don’t worry about it.” He says, “We will work you into the schedule when you get here. Just get here safely.” I’m like, “Okay.” I appreciated that. [B/PI/1806] “I mean, quite frankly, I can’t get over how responsive doctors in this facility are to email. And I email doctors regularly because it’s easy to figure out the pattern, and I often hear back within an hour from the doctors themselves.” [W/CI/1460] “Even though the wait time was long and it got on my nerves, [the clinician] made up for it because she was caring.... You know, you put all of that stuff to the back and go, ‘My doctor’s here,’ so that didn’t matter.” [B/PI/2482] | ”And it’s been difficult, like since the doctor was a specialist I had to wait sometimes about six months before I could get an appointment…It gets very difficult.” [A/PI/1392] “They just send you a paper that says referral on it and it’s in the bottom it says 8/21 at 8:40 early in the morning. Like I wish they would’ve called me or asked me, hey, what time works best for you?” [LE/PI/765] “I think the hardest part about it, actually, was if there was a problem, I had a really hard time getting a hold of her assistant.…It was really hard to get a call back from her… it seemed sometimes like alchemy to try and get connected to her.” [W/CI/171] “Maybe that’s what’s the $500-dollar visit for, a measure and weigh. Now is that of value?... Or why don’t we just go and save our money and not get billed?” [A/PI/1502] |
| C. Pivotal role of personal interactions | Interpersonal skills Professionalism Personalization Engagement with child Shared decision-making Valuing parental expertise Perception of stress Depth of bond with clinician | “Even the desk people at check-in don’t necessarily know [the patient] by name, although I think they really do. But they’re warm and inviting, and especially talking with doctors that you know are like world renowned doctors and surgeons who are sitting there with just their legs crossed chatting with you, not in any way sending the message that they’re in a rush. That just feels good and is sort of comforting.” [W/CI/1460] “When [the doctor] arrived, I think she already had some information about why we were there, I think that she tried to be kind, she treated the child, she spoke to him, she began to examine him, and also to the interpreter to see if there was an interpreter, and she began to check my child. And I think she was very specific with all the things she told me, and she examined him and asked the child many things and checked everything. I think she was very good at checking my child.” [LS/PI/184] “She’s always very interested in how [the patient] is doing at school, what subject he likes, what he wants to be when he grows up. She makes us feel special and explores how she can help us more. She investigates if everything is fine at home, if we have food, if we need some help from the government, for something, and everything. She investigates and explores everything” [LS/PI/5030]. “[The clinician] is just very engaging, and [the patient] is the type of kid that asks a million and one questions, again because she is interested in medicine, and so all of her doctors sort of entertain that and go with it and have been really engaging, not to say, “[Patient] shut up” or “I’m not going to answer your questions.” They have always just embraced her curiosity.” [LE/CI/1969] “I think we’re all in agreement. I don’t want to say I make the decision because I’m not the doctor. And I don’t want to say they made the decision because they’re not her parents. So I think we all come into agreement. I mean she makes her suggestion and she says that she strongly thinks that we should do it. Okay. Yes, let’s do it. I’m not going to say, “Oh, no,” unless if I really feel like I don’t want to do it.” [B/PI/1228] “[The doctor] really believed in mother’s intuition, so whenever I was concerned about something and he knew I was always on point, so if I wanted like for her to have an x-ray, if he didn’t feel something was right he would be like, “Alright, because you feel that way we’ll kind of justify whateve, and then he will go with what I say.” [LE/CI/442] N/A “I’m amazed because I’ve never seen a doctor like that, who encourages the child to keep dreaming…, [the doctor] helps me so much. He tells me, he motivates me to keep going with the children because he tells me I’m going to help you, I’m going to be there with you, I’m going to support you he says, so that you can keep going…He tells me, don’t lose heart, keep going in life. I know, I have to fight for the children, they need me. And he’s always encouraging me, telling me not to lose heart.” [LS/PI/801] | “I think his approach was just kind of very harsh. And at that time it was just a very, very sensitive time and emotional time for me, and so what he was saying didn’t make me feel very, very comfortable.... So I think that just who he is and how, maybe just the field that he works in is just kind of that way, cutthroat.” [B/PI/969] “So the doctor came in, asked again why we were there. What was, again, off-putting is that it’s like the didn’t know. I kind of feel, and I don’t know if it’s realistic to sort of have the doctors have an idea of why, if it’s just a regular physical or if it’s a follow-up to something. Just not the details, but sort of an idea of who they’re going to see that day.” [LE/CI/2351] “If they don’t look to ask background questions, like has [the patient] been to camp or blah, blah, you don’t look to find out general about the person, anything particular about the person then I’m not looking to talk to you, because if you don’t look to get to know about [the patient] and her life…how do you know what she is doing and what affects her health if you don’t know about her.” [LE/CI/442] “I would like for her [the patient] to be more involved, because she does pay attention and she does take an interest in this. Maybe involve her a little bit more, ask her what she is experiencing, what it looks like, because I’m not in the bathroom with her all the time, so when it comes to toileting ask the person who is doing it.” [W/PI/1373] “There are other clinics where I feel like we are the final decision makers, but not in a positive way, kind of like, “Well, so what do you want to do?” But I didn’t go to med school, so like I like the partnership of, “Does that work for you? What do you think?” And I think it’s appropriate in certain acute situations for the doctor to be like, “This is the plan” or for a parent to say, “I can’t do that. What else could we do?” But a lot of the time I feel like we’re left with the, “Well what do you think about that?” Well, I think I don’t want her to be sick.” [W/PI/1316] “If I tell you as mother, that this doesn’t sound right, that what you’re telling me is not satisfactory, then try to rethink it…because I’m his mom. You’re seeing him today for five or ten minutes and you’re looking at him as part of a large population, but I’m telling you that I know him and that what you’re telling me doesn’t make sense because his behavior is not following those lines.” [LS/CI/632] “Some [staff members] are usually more like overwhelmed. Do you know what I mean? Like, how, how would you say fluster[ed]? They lose that touch.…They lose ‘that let’s not rush, let’s take time to actually know what’s going on.’ They lose that. It’s their environment.” [LE/PI/765] “For 26–27 years, having a relationship with the doctor, and then he’s gone. And you don’t have another doctor like that. It’s hard to find it. So it’s a lot.” [LE/PI/1025] |
| D. Effective explanations | None | “I think as a parent you want to feel like they’re not sort of holding anything back. And I, for the most part, have that sense. I’m a parent that wants to know sort of more than not…And I think they’re pretty good about it. They all explain the tests…Which for me was very helpful.” [LE/CI/2351] “She definitely answered everything and wanted to make sure that I was comfortable with what was being prescribed for him before we left with it.” [B/PI/969] | “There was 1 doctor that we switched out of because he was not using, actually he was one that wasn’t using like easy terms for us to know and very quick…it was horrible and I felt like I didn’t know what was going on when I left the office and I felt frustrated because here’s my little baby and I’m supposed to like go and get all these tests and I didn’t even know what the heck he was talking about.” [B/CI/359] “[The] doctor told me…“You don’t need it [a test].” But I don’t know why… explain [to] me why I don’t need it. That would be better.” [A/CI/1310] |
A, Asian parent; B, Black/African American parent; CI, commercial (private) insurance; LE, Hispanic/Latino and English-speaking parent; LS, Hispanic/Latino and Spanish-speaking parent; PI, public insurance; W, white parent.
Overarching Theme: Discrimination and Disrespect
At all stages of the care journey, disrespect and judgment by staff and clinicians affected perceptions of care. Clinicians’ attentiveness to and respect for families’ preferences were crucial. Negative expectations and previous experiences were reinforced by disrespect or discrimination, undermining trust in care. Many parents recalled detailed incidents of disrespect from past visits. This included perceived assumptions regarding families’ culture, financial status, or background. A Black/African American mother noted:
“My daughter was crying and [the nurse] came in [and stated:]’ It’s tough being a single mom. Huh?’.…I am not a single mom. Why would you assume that I’m a single mom? My husband is on his way to pick me up.” [B/PI/1576]
Such assumptions resulted in parents feeling targeted by clinicians or staff because of their culture or background. For example, when a nurse offered informational materials in Vietnamese, a parent felt that biased assumptions were made about her family’s ability to speak English (Table 2). This sentiment was echoed in relation to socioeconomic status:
“I hate when they bring up vouchers, especially if they know I’m a single mom. Like, I have a good job. I can’t even qualify for vouchers, but it seems offensive to me to kind of throw that [out] as an option. If you have a poster or something in the waiting room, or even …put a card out at check-in, that allows people to kind of discreetly address that versus having that kind of tossed in their face.” [B/PI/8972]
Additional comments included perceived disrespect toward parents and lack of trust:
“When my daughter was in the urgent care for her carbon monoxide poisoning sometimes I just feel that being a minority they just perceive you as overreacting, ‘you don’t know, this is just asthma.’ They were like, ‘Maybe she is trying to over exaggerate something with the housing, she is complaining.’ They doubted my intentions.” [A/PI/1392].
Conversely, parents noted how respect from staff helped to build trust:
“The thing is, I’m young, married and I’m a woman. And they’ve always treated me as that, a mom and a woman and a person that knows what she’s talking about…So I’ve never felt like I was ever belittled or looked [down] upon because I was either Black or young.” [B/PI/1228]
Negative comments were more prominent among parents with public insurance than those with private insurance. Black/African American and Hispanic/Latino parents had the highest proportion of negative comments, followed by Asian parents.
Mitigation of System Issues
Parents had varied experiences of staff or clinicians mitigating system issues, which influenced their overall perceptions of care quality. Parents had mostly negative perceptions of accessing care, eg, making appointments, transportation or parking, and wait times. The extent to which staff offered workarounds to accommodate individual circumstances, the effectiveness of communication outside of clinic visits, and parent analysis of the value of care versus systems issues encountered emerged as important subthemes.
Negative structural issues were, at times, mitigated by staff offering accommodations, eg, rescheduling appointments or refilling prescriptions. The degree to which such workarounds were offered appeared to mitigate or exacerbate overall care experience:
“I think [the clinic] is very, very flexible… [B]ecause he’s a complex care child who has lots of needs, there’s a lot of available options. So if I need [an appointment] faster or later or we’re on vacation, they work with me really well to say– whenever possible to push it to the late afternoon. They’re willing to do that.” [W/CI/1460]
Parents also highlighted the importance of setting expectations before and after visits, and emphasized the role of multimodal communication. Negative comments cited the lack of follow-up by the care team and the inability to contact a clinician. Parents also expressed frustration around having to coordinate care across departments:
“Some specialists are really not that great in regards to following up. And so … my daughter’s not going to get the care she needs if I don’t keep harping on them.” [B/PI/8972]
When parents considered the overall value of the visit, negative experiences with the system were either ameliorated or intensified by the amount of time spent with the clinician:
“When you get [to the visit], you wait 20 to 30 minutes. By the time you get to the room itself, it is another 10.… So it really gets me really upset, because I come here, wait 30 minutes or an hour more, [after getting] here on time. And then, by the time you get to be seen by the doctor, it’s a 5-minute visit. And it’s like, what?” [LE/PI/1025]
A higher proportion of Asian and Hispanic/Latino parents reported care system issues than other racial and ethnic groups. Nearly all parents with public insurance made at least 1 negative comment about system issues. By comparison, fewer privately insured parents commented on care system difficulties.
Pivotal Role of Personal Interactions
Staff and clinician interactions with families were essential to overall perceptions of care and reduced the impact of problems in other parts of the care journey. Many parents agreed with the sentiment that “people [are] what makes the experience a best experience” [A/CI/5152]. Several subthemes emerged that defined the qualities of the best personal interactions: interpersonal skills, professionalism, personalization, engagement with child, shared decision-making, valuing parental expertise, perception of stress, and depth of bond with clinician.
Demonstration of strong interpersonal skills from staff or clinicians enhanced care experience. This included staff being “warm,” accommodating, friendly, thorough, empathetic, and conveying “true caring.” Parents also commented on professionalism, or how well the team met parental expectations of their role, including knowing the child’s medical history or the reason for an appointment.
Personalization of care was highly valued. Many parents commented on the importance of clinicians and staff remembering their child and connecting with them on a personal level. Clinicians “taking the broader approach,” that is understanding the impact of illness, care, or clinical decisions on a child’s life outside of the clinical setting was appreciated. Also crucial was active engagement with their child, including play with a younger child or talking directly with older patients.
Parents also commented on decision-making, and many emphasized the need for clinicians to value parents’ expertise and “intuition.” Eliciting parent opinions and partnering with them in care decisions was perceived as showing respect for parents’ unique understanding of their child:
“That’s one of the reasons we stayed with this doctor as long as we have. Not only is he a good doctor but just as equally important is the aspect of wanting our opinion and really acknowledging that we’re part of the care team. I feel [that’s] as important if not more than his doctoring skills.” [W/PI/940]
Negative comments reflected parent frustration with not being involved in treatment decisions, or, conversely, concerns that clinicians grant parents too much freedom to make decisions, creating an unwanted burden of responsibility.
Parents were also attentive to the perceived stress of staff and clinicians. Negative comments included staff appearing overwhelmed, rushed, and busy. Clinician and staff stress contributed to feelings of “tension,” “negative energy,” and “chaos” in clinics.
Lastly, parents commented on the bond they had with clinicians, particularly longitudinally. Depth of connection with clinicians emerged as an important subtheme for Hispanic/Latino parents. Hispanic/Latino parents often referred to “relationship” and “connection” when describing positive experiences and emphasized the importance of clinicians knowing and supporting the patient and family. For these families, a bond with the clinician appears essential to trust, and its absence was noted:
“Every time I talk about this specific office with my husband, I say this is the one that I feel least connected with…because I’m so used to having a relationship with all our doctors.…And because this specific provider has been in my son’s life since he was born, I would expect for there to be more of a relationship, and there isn’t.” [LE/CI/287]
Overall, white parents made a higher proportion of negative comments regarding personal interactions than other parents. Parents with public insurance also expressed more negative experiences with personal interactions compared to those with private insurance.
Effective Explanations
Effective explanations from clinicians served to educate and reassure parents, contributing to assessment of care experience overall. Parents commented on methods of effective clinician communication, including explaining medical terminology, using diagrams or visual aids, describing reasons for testing or prescriptions, and providing clear steps for follow-up care. Parents also valued clinicians allowing ample time for their questions and providing detailed answers.
Many parents noted that explanations gave them reassurance before leaving the clinic. Others highlighted how explanations educated them about their child’s condition or how to care for their child:
“When we come out of a visit and I know what to do or not do and what that is supposed to look like I always feel like that is a good visit.” [W/PI/1316]
Across all racial and ethnic groups, there was little difference in positive and negative sentiment about explanations received.
Discussion
As the largest qualitative study conducted in pediatric ambulatory experience to date, our study furthers understanding of the complex interactions of racial and ethnic and socioeconomic differences in the care experience. We identified 3 primary themes that are integral to the patient or family experience of care: mitigation of system issues, pivotal role of personal interactions, and effective explanations. Discrimination and disrespect was an overarching theme that undermined trust in care. Parents’ experiences related to discrimination and disrespect were worsened, reinforced, or ameliorated by system structures and actions of individuals across the care journey. Across all themes, except for effective explanations, more parents with public insurance made negative comments than those with private insurance. In particular, the majority of interviews with Asian parents with public insurance were negative in sentiment. Given the link between positive patient experiences and improved health outcomes, it is essential that these disparities are further examined and addressed.2,3
Our findings reinforce the central role of communication with clinicians. Clear and thorough explanations are crucial to address parent concerns and increase understanding, comfort with care received, and trust in clinicians. Indeed, positive clinician-family communication appeared to ameliorate poor experiences with systems factors. Our results highlight specific aspects of clinician communication that contribute to this positive experience, including setting expectations, personalizing care, and valuing the family’s expertise. These elements align with identified best practices for pediatricians in communicating with patients and families to ensure patient- and family-centered care and improved health outcomes.43,44
Preferences for and expectations of interactions with clinicians may vary by race and ethnicity. The depth of connection with clinicians was particularly important for Hispanic/Latino parents in our study. For these families, relationship-building was essential for trust in care. This finding expands on previous research that has recognized the role of normative cultural values for Hispanic/Latino patients in influencing expectations and experiences with clinical interactions.45,46 Personalismo, a cultural concept that emphasizes warm, caring, and trusting interpersonal bonds, has been identified as a crucial element of the doctor-patient relationship for Hispanic/Latino families and is associated with disclosure of relevant medical information and adherence to treatment plans.45,47–51
Although clinician awareness of differences in cultural values and perspectives between diverse patient populations is necessary, it is also crucial that patients are viewed as unique individuals, and not solely as members of a particular cultural group.52 Practicing cultural humility, which includes listening to a patient’s perspectives, concerns, and values, and reflecting on one’s own biases and assumptions is essential for culturally effective care.53 One evidence-based strategy for culturally sensitive communication is the LEARN model (listen with sympathy, explain your perceptions, acknowledge and discuss the differences or similarities, recommend treatment, and negotiate agreement).54 Numerous other frameworks and strategies exist to enhance clinicians’ ability to communicate cross-culturally.49,55
In our study, insurance status emerged as an important marker for differential experiences, supporting previous work that suggests poorer perceptions of care among publicly insured patients.20,56 Parents with public insurance made more negative comments overall and reported particularly negative experiences with navigating the care system compared to those with private insurance. For Asian and white families, more negative experiences were reported among publicly insured parents across all dimensions. Patients with public insurance reported feeling judged or disrespected, contributing to overall negative experiences.
A particular strength of our study is the consideration of intersectionality. We delved into families’ experiences of care as individuals belonging to different groups. For example, the disparities in care for Asian parents with public insurance reflected experiences unique to this subpopulation distinct from Asian parents with private insurance. Additional aspects of identity, such as sex and immigration status, may also contribute to differences in experience and warrant study.
Our study has several limitations. Interviews were conducted at a single academic medical center. Additionally, the results were subject to participants’ recall bias. Future qualitative studies could further explore the role of primary language or clinician-patient racial concordance in influencing patient experience.
Our findings have important implications for understanding patient and family experience in the pediatric ambulatory clinic setting. At our institution, in light of our results, we have focused on improving clinician communication and connection with families by developing and implementing a clinician training and coaching program. Additionally, clinician training around cultural humility and implicit biases are essential to avoiding clinician or staff assumptions and showing respect for each patient or family’s circumstances.55,57 Recent work emphasizes the feasibility and effectiveness of culturally sensitive interventions in eliminating disparities in the pediatric primary care setting.27 Intentional and evidence-based changes incaredelivery systems may support efforts to overcome the barriers to equitable health care for all pediatric patients and their families.
Acknowledgments
We extend our gratitude to the parents or guardians who participated in this study and offered their invaluable perspectives on their care experiences. We also acknowledge the clinic staff members for their collaboration and assistance. We would like to thank Eva Gómez, MSN, RN, NPD-BC, CPN, Esterlina MacInnes, and Carlos Estrada MD, MBA, for all of their contributions to this work. Additionally, we thank the Program for Patient Safety and Quality and the Office of Health Equity and Inlusion at Boston Children’s Hospital for their support in this research.
Dr Luff participated in the design and development of the study, reviewed analyses, and drafted the initial manuscript; Ms Buscher conducted analyses and reviewed and revised the manuscript; Dr Ward reviewed analyses and reviewed and revised the manuscript; Dr Ballal reviewed analyses and reviewed and revised the manuscript; Mr Holden, Ms Pierre, Mr Won, and Ms Yu collected data, conducted analyses, and reviewed and revised the manuscript; Dr Toomey participated in the design and development of the study, reviewed analyses, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2022-058243.
FUNDING: All phases of this study were supported by a grant from the Program for Patient Safety and Quality at Boston Children’s Hospital.
CONFLICT OF INTEREST DISCLOSURES: The authors have no conflicts of interest relevant to this article to disclose.
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