Children in immigrant families comprise ∼25% of US children and live in families with high levels of poverty and food insecurity. Studies suggest a decline in public benefit enrollment among children in immigrant families. We aimed to explore perspectives on barriers and facilitators in accessing care among immigrant caregivers of hospitalized children.
With a general qualitative descriptive design, we developed a semistructured interview guide using an iterative process informed by literature and content expertise. Using purposive sampling, we recruited immigrant caregivers of hospitalized children in March 2020 and conducted interviews in English or Spanish. Interviews were recorded, transcribed, and translated to English. Three authors coded transcripts using Dedoose and identified themes via thematic analysis.
Analysis of 12 caregiver interviews revealed barriers and facilitators in accessing healthcare and public benefit use. Barriers included healthcare system barriers, immigration-related fear, and racism and discrimination. Within healthcare system barriers, subthemes included language barriers, cost, complexity of resource application, and lack of guidance on available benefits. Within immigration-related fear, subthemes included fear of familial separation, fear of deportation, fear that benefit use affects immigration status, and provider distrust. Healthcare system facilitators of resource use included recruiting diverse workforces, utilizing language interpretation, guidance on benefit enrollment, legal services, and mental health services. Participants also recommended hospital partnership with trusted information sources, including media stations and low-cost clinics.
Immigrant caregivers of hospitalized children identified barriers and facilitators in access to care. Further research is needed to assess the efficacy of caregiver-suggested interventions.
Children in immigrant families (CIF) comprise about 25% of United States (US) children.1 Defined as either foreign-born children or children with 1 or more immigrant parent, CIF face significant socioeconomic and healthcare disparities and are more likely to live in poverty and lack health insurance compared with children with parents born in the US.1,2
Despite these hardships, studies suggest a decrease in public benefit enrollment among CIF.3,4 Moreover, 88% of CIF are US citizens, and thus could qualify for resources like Supplemental Nutrition Assistance Program (SNAP); Special Supplemental Nutrition Program for Women, Infants, and Children (WIC); Medicaid; and Children’s Health Insurance Program (CHIP).5 Logistical obstacles, inconsistent employment, language barriers, lack of education, cost, and immigration-related fear have been described as obstacles to healthcare and benefit use, particularly among undocumented immigrants.6–9 Although barriers in access to care among immigrant families are known, limited data gauge perspectives directly from immigrant families on why these barriers exist and what healthcare providers can do to mitigate them.10
We aimed to explore immigrant caregiver perspectives on barriers and facilitators to public benefit use and healthcare access on behalf of their children.
Methods
Study Design
We used a qualitative descriptive design11–13 to explore immigrant caregiver perspectives. Qualitative descriptive studies provide straightforward descriptions of participants’ experiences, presenting findings in a way that directly reflects the terminology used in the initial research question. Using purposive sampling, we identified immigrant caregivers of children ages 0 to 18 years admitted to general inpatient pediatrics services at a large quaternary children’s hospital in Houston, Texas, during the first half of March 2020 (before pandemic shut-down).
We approached rooms door-to-door, informed potential participants about our study, and asked whether their child had a foreign-born parent. If the participant responded affirmatively, we asked about willingness to participate in our study. We obtained verbal consent in English or Spanish. This study was approved by our Institutional Review Board. We obtained a waiver of signed consent and did not ask identifying information (including patient or caregiver demographics), given the sensitive nature of discussing immigration-related topics with families who may be undocumented.
Bilingual study staff trained in qualitative interviewing performed semistructured individual interviews using an interview guide in a private setting. Study staff used probing questions to explore emerging concepts. The audio-recorded interviews lasted approximately 45 to 60 minutes. Recruitment continued until research was halted at our institution because of pandemic shut-down. At that time, we analyzed interviews and identified consistent themes. No new themes arose in our final 3 interviews.
Interview Guide Development
We developed an interview guide based on content expertise from immigrant health and qualitative research experts and consistent with an immigrant health service utilization framework by Yang and Hwang (Supplemental Fig 2).14 We created the guide in English and translated it to Spanish using a professional translation service. We piloted the guide with 5 English-speaking and 5 Spanish-speaking families before enrollment. The guide included questions about barriers in accessing public benefits and healthcare and how healthcare providers can facilitate access to care and public benefit use for immigrant families.
Data Analysis
Bilingual study staff transcribed audio-recorded interviews verbatim in English or Spanish and translated written Spanish interviews into English. An additional bilingual team member cross-checked translations to ensure accuracy. We assigned codes to transcribed interviews and removed personal identifiers. Analysis included analytic memos, reflexive notes, and bracketing in field notes. A detailed research record provided a study audit trail. Three authors trained in qualitative research methodology (R.A., M.M., K.G.) coded each interview independently using Dedoose (qualitative data analysis software). Each coder read all transcripts to familiarize themselves with the data. Coders initially coded 2 interviews together, then coded each remaining interview independently, and finally reviewed all interviews together to confirm the coding approach. We assigned codes to each interview using in vivo coding and used axial coding, a coding step in grounded theory, to relate codes and construct linkages.15 We used descriptive thematic analysis and the Yang and Hwang immigrant health service utilization framework to interpret study findings and derive themes.14,16 Coders met periodically to discuss until a consensus was made to ensure intercoder reliability. We used deductive and inductive thematic analysis to identify, define, and refine themes.17
Results
Of 16 caregivers approached, 12 mothers enrolled (8 in Spanish, 4 in English). One dropped out because of a fussy toddler, and 3 declined. Caregiver children ranged from 3 weeks old to 16 years (median age 6 years); half were female. Caregiver origins included Africa, Latin America, and the Caribbean. Caregivers described barriers, facilitators, and gratitude during interviews about accessing healthcare and public benefits. Six total themes emerged from our analysis. Three themes are listed under “Barriers,” and 2 themes under “Facilitators.” Although not directly related to our objectives, our sixth theme is listed under “Gratitude.” Figure 1 demonstrates a modified version of the Immigrant Health Service Utilization Framework by Yang and Hwang. In this figure, our identified barriers and facilitators were summarized into “topic summaries” within the framework.
Modified Immigrant Health Service Utilization Framework by Yang and Hwang based on topic summaries that emerged from analysis of caregiver themes.
Modified Immigrant Health Service Utilization Framework by Yang and Hwang based on topic summaries that emerged from analysis of caregiver themes.
Barriers in Access to Healthcare and Public Benefits
Table 1 displays themes and subthemes within barriers in accessing healthcare and public benefits and representative quotations (in addition to those found in this text). Supplemental Table 3 includes original Spanish quotes. Themes with bulleted subthemes are found below.
Additional Representative Quotations Describing Immigrant Barriers to Healthcare and Public Benefit Use
| Theme | Subtheme | Representative Quotes |
|---|---|---|
| Healthcare system barriers impede immigrant quality of care and ability to enroll in benefits. | Language barriers: | “They force you to be like stressed out in that part because they don’t provide an interpreter sometimes. Or sometimes it is difficult to understand them” [#3, English translation]. “Well, the thing is that [my pediatrician] speaks English […] I would like to learn more [about benefits]. Although I cannot read, my child helps me read. [I ask him] ‘read to me what it says here please’ and he can tell me” [#6, English translation]. “It was very hard. I needed someone [with me] to understand. I always had to have my sister with me […] but the days that she couldn’t go it was […] discouraging” [#12]. |
| Cost: | “Really, this year [my husband] didn’t have a job for 3 months, and we lived off a little job where I earned $200 to $250t a week. So, from that we started to buy food. […] So, it was very difficult for us. So, when [my daughter] fell sick, […] we left [to the hospital] because it was her life, right? And we didn’t have insurance. So now we’re looking at this paperwork thing, because we have this bill. […] I stopped working because she’s sick, so the only one working is [my husband]. And I tell him, if the bill stays like this, I’m going to have to go back to work because we have to pay that bill” [#2, English translation]. “I worry because sometimes the check-ups are expensive and we can’t pay” [#7, English translation]. | |
| Complexity of resource application: | It gives me a lot of anxiety [applying for SNAP]. The food stamps I did over the phone. But sometimes they didn’t have a chance to do it on the phone, so I had to go at a certain time. My husband would take me and leave me there in person, and I was more afraid. And for [school lunches], I always sent the paper [application] there. [#2, English translation] “Look, [the pediatrician] hardly give[s] me much information [about benefits]” [#6, English translation]. “They took away my CHIP and they wanted a piece of paper from my workplace, but since we don’t have papers, they can’t give it to me” [#7, English translation]. “For the first 4 months of my pregnancy, I didn’t see a doctor because I applied for the wrong program and I was denied. And it was after doing my own research that I found out that I don’t qualify for Medicaid. It’s only for citizens. But I could take CHIP. Which is a program that I think is a children’s health something, something” [#10]. | |
| Immigration-related fears prevent families from accessing benefits and healthcare on behalf of their children when they need it. | Fear of familial separation: | “Sometimes I say to [my husband], ‘Oh, I feel so alone!’ […] It is work, home, work or school, home... but to go out one doesn’t feel so free […] because we don’t want to expose ourselves […] There are many, many aspects that we have to sacrifice for [our children]. […] It’s like the song says, ‘Even though the cage is made of gold, it’s still a prison.’ That’s what it feels like. You can have everything, but you’re locked up, that is, with your family” [#2, English translation]. “God willing, later on the laws will […] help people... At least to let us say goodbye to one’s loved ones who die [in our home country]. My mom already told me, ‘If I die, don’t come,’ she said ‘because you have a life there [in the United States]. You have your children there. They are putting down roots there. They are having a better life than you had here. You had no flip-flops, no shoes, you walked barefoot’ Yes, yes, I remember. She says, ‘and they at least have their sneakers, their flip-flops.’ In other words, they have more things than 1, more than the basic needs. Then, well, I say, ‘but no ma’ it’s very hard.’ I say, ‘how am I going to do that?’ I say, ‘You’re my mom,’ and she says, ‘Yeah, but how are you going to get back? How are you going to join them afterwards? You are going to separate the family’” [#2, English translation]. “Oh yes, because I’m afraid that...I’m afraid that sometimes by mistake or error, people get caught and don’t get a chance to stay here anymore. And then the children...what about them?” [#3, English translation]. “I’ve seen on TV all that they say, and it’s obvious. One as a mother, if they […] take away the mom [from her children], because the children are so attached to their mother, the children [get sick]” [#4, English translation]. “The news is always saying that if we ask for government resources, […] that it will affect us if one day we want […] to be residents or citizens” [#5, English translation]. |
| Fear of deportation: | “He took my husband away in handcuffs and the children were crying and saying, well, their daddy, their daddy. I can imagine how they felt about seeing their dad. Now, the children who know that their father is going to be deported, that they are not going to see him again because they are going to send him to another country, it is very hard. It’s very hard and it’s a lot of psychological damage for them. It’s very depressing. It’s what they’re going to do to the children; they’re going to give them depression; they’re not going to want to do anything, it takes away their motivation to continue. Yes, it’s very difficult” [#2, English translation]. “My child the other time asked me what deportations were? Because sometimes they watch the news, and sometimes ‘look what’s going on!’ he tells me. And ‘what are deportations?’ he tells me. ‘Well, it is when the police go and grab your dad and send him to El Salvador.’ ‘Oh! But that is not going to happen to my daddy’ he says. ‘No,’ I say, ‘not right now ... because God is taking care of him, and then we hope in God that that will not happen.’ ‘But the president is going to give him papers, right?’ ‘Someday, God-willing.’ ‘Okay,’ he says” [#6, English translation]. “Here, since one does not have papers, it feels like one is hiding for doing nothing. Sometimes it’s hard because ... I mean, maybe, maybe some time! Maybe! ... we get a permit […] with a permit, one can be safer” [#7, English translation]. “People are scared of immigration and being deported. You know, people that don’t have papers, you know, it’s something I think very typical, because obviously there’s a lack of information” [#8]. “Now, more than ever, it’s a very scary time. A lot of people are working, and now it’s like, OK, well everyone who is working, ya’ll got a little chance. But if you are here and you’re on food stamps, if you’re on Medicaid, you’re gonna be one of the first ones out. You’re, once again, you’re a liability. See you’re not helping the problem. You’re, you know, adding to the problem is how I feel” [#12]. | |
| Fear of benefit use affecting immigration status: | “Sometimes I would like to go ask for the stamps, but [my husband] won’t let me because they won’t give us papers” [#6, English translation]. “I know people that called cancelled their benefits. Even when they were doing it, they were being told ‘No, it doesn’t affect you’ but they were still scared. They canceled it. But I also know that that is also because of misinformation because not all of these programs […] fall under the category that [...] would really make you not have a green card” [#10]. “The fear is even more intense now with a new law that the president passed that if you have ever benefited from any government benefits program or even applied for, something like that, you will be denied a green card. If I apply for a green card. That’s a new law. I think that was like last month. That has been in effect from last month. So that I think has frightened many mothers and some of them have cancelled their benefits” [#10]. “There are so many mothers in our communities who are not aware […and] have lost their benefits. Of course, cancelled their benefit because they are scared that it might deprive them from having a green card and a future” [#10]. “We believe that if you do food stamps, when you file for your parents or when you file for your siblings, you will be denied. Because [the government believes] that you’re getting assistance from the program and you still want to bring in someone to cost more money to the US government” [#11]. “Sometimes, yes. Because part of getting to be in America is that you can support yourself. So, if you come over here and run into hardship and you have to go to the state and say I need help. Then what’s to happen? Do they alert someone and say ok, well, now this person is in the system and, you know, maybe your education visa, or something maybe it’s getting denied the next time. You don’t know why. It’s because probably you spent 3 months on food stamps, and now you’re a liability instead of an asset to America” [#12]. | |
| Provider distrust: | “Sometimes [doctors] don’t worry about the people. That their work is what they do and that is it.” [#5, English translation] “It is not well known at that time who is on your side and who is not.” [#9, English translation]. “I’m not ashamed of where I come from, but I mean, [immigration status is] not something that I would discuss with my medical team. Because it’s still a lot of private stuff” [#12]. | |
| Racism and discrimination by society, healthcare providers, and benefits staff make immigrants feel unwelcome and hesitant to access care. | Unfair judgement: | “Sometimes [when] I go to public places, they look at me with my 4 children. I once heard a bad comment from a lady [saying], ‘She has 4 children to ask for stamps’” [#6, English translation]. “[Doctors] do judge and I think it’s solely based on what they’ve heard […] the fact that we don’t do medicine. You know, I don’t have a very lengthy medical history because I don’t utilize the doctor. And so, I guess it’s a little difficult to work with someone like that that you can’t say. You know, they asked me ‘when was the last time you’ve been to the doctor?’ I couldn’t tell you. ‘What is the last time you had a shot?’ I never had, you know. It’s things like that, I don’t know. I guess it waves these red flags for them or something.” [#12] |
| Interpersonal racism: | “Sometimes, one comes across people that are like, um, racists, to say it like that, and, it’s disconcerting talking with them and more so with one not knowing the language here” [#3, English translation]. “I felt that this did not sit well with the [benefits worker] that I did not understand her” [#7, English translation]. “I’ve learned from [racism]. When I, you know, going to these places and they’re treating me rude […] you learn from that experience. Learn a different way to talk to them. I’ve even gotten a proper voice. So, I’ve learned to speak English in a little bit more better way and then you learn how to change your voice. Soften it up, bring it down and watch your facial expressions. […] I have to coach myself because Haitians are a very expressive people and it could be taken wrong […] You kind of have to change yourself a whole heck of a lot. And it’s kind of hard because I’m used to being me. […] when you go into certain places, it’s definitely you gotta put on your suit. This is not the time to be you. This is the time to be trying to fight for your family, for these benefits, and you’re really at the mercy of them” [#12]. |
| Theme | Subtheme | Representative Quotes |
|---|---|---|
| Healthcare system barriers impede immigrant quality of care and ability to enroll in benefits. | Language barriers: | “They force you to be like stressed out in that part because they don’t provide an interpreter sometimes. Or sometimes it is difficult to understand them” [#3, English translation]. “Well, the thing is that [my pediatrician] speaks English […] I would like to learn more [about benefits]. Although I cannot read, my child helps me read. [I ask him] ‘read to me what it says here please’ and he can tell me” [#6, English translation]. “It was very hard. I needed someone [with me] to understand. I always had to have my sister with me […] but the days that she couldn’t go it was […] discouraging” [#12]. |
| Cost: | “Really, this year [my husband] didn’t have a job for 3 months, and we lived off a little job where I earned $200 to $250t a week. So, from that we started to buy food. […] So, it was very difficult for us. So, when [my daughter] fell sick, […] we left [to the hospital] because it was her life, right? And we didn’t have insurance. So now we’re looking at this paperwork thing, because we have this bill. […] I stopped working because she’s sick, so the only one working is [my husband]. And I tell him, if the bill stays like this, I’m going to have to go back to work because we have to pay that bill” [#2, English translation]. “I worry because sometimes the check-ups are expensive and we can’t pay” [#7, English translation]. | |
| Complexity of resource application: | It gives me a lot of anxiety [applying for SNAP]. The food stamps I did over the phone. But sometimes they didn’t have a chance to do it on the phone, so I had to go at a certain time. My husband would take me and leave me there in person, and I was more afraid. And for [school lunches], I always sent the paper [application] there. [#2, English translation] “Look, [the pediatrician] hardly give[s] me much information [about benefits]” [#6, English translation]. “They took away my CHIP and they wanted a piece of paper from my workplace, but since we don’t have papers, they can’t give it to me” [#7, English translation]. “For the first 4 months of my pregnancy, I didn’t see a doctor because I applied for the wrong program and I was denied. And it was after doing my own research that I found out that I don’t qualify for Medicaid. It’s only for citizens. But I could take CHIP. Which is a program that I think is a children’s health something, something” [#10]. | |
| Immigration-related fears prevent families from accessing benefits and healthcare on behalf of their children when they need it. | Fear of familial separation: | “Sometimes I say to [my husband], ‘Oh, I feel so alone!’ […] It is work, home, work or school, home... but to go out one doesn’t feel so free […] because we don’t want to expose ourselves […] There are many, many aspects that we have to sacrifice for [our children]. […] It’s like the song says, ‘Even though the cage is made of gold, it’s still a prison.’ That’s what it feels like. You can have everything, but you’re locked up, that is, with your family” [#2, English translation]. “God willing, later on the laws will […] help people... At least to let us say goodbye to one’s loved ones who die [in our home country]. My mom already told me, ‘If I die, don’t come,’ she said ‘because you have a life there [in the United States]. You have your children there. They are putting down roots there. They are having a better life than you had here. You had no flip-flops, no shoes, you walked barefoot’ Yes, yes, I remember. She says, ‘and they at least have their sneakers, their flip-flops.’ In other words, they have more things than 1, more than the basic needs. Then, well, I say, ‘but no ma’ it’s very hard.’ I say, ‘how am I going to do that?’ I say, ‘You’re my mom,’ and she says, ‘Yeah, but how are you going to get back? How are you going to join them afterwards? You are going to separate the family’” [#2, English translation]. “Oh yes, because I’m afraid that...I’m afraid that sometimes by mistake or error, people get caught and don’t get a chance to stay here anymore. And then the children...what about them?” [#3, English translation]. “I’ve seen on TV all that they say, and it’s obvious. One as a mother, if they […] take away the mom [from her children], because the children are so attached to their mother, the children [get sick]” [#4, English translation]. “The news is always saying that if we ask for government resources, […] that it will affect us if one day we want […] to be residents or citizens” [#5, English translation]. |
| Fear of deportation: | “He took my husband away in handcuffs and the children were crying and saying, well, their daddy, their daddy. I can imagine how they felt about seeing their dad. Now, the children who know that their father is going to be deported, that they are not going to see him again because they are going to send him to another country, it is very hard. It’s very hard and it’s a lot of psychological damage for them. It’s very depressing. It’s what they’re going to do to the children; they’re going to give them depression; they’re not going to want to do anything, it takes away their motivation to continue. Yes, it’s very difficult” [#2, English translation]. “My child the other time asked me what deportations were? Because sometimes they watch the news, and sometimes ‘look what’s going on!’ he tells me. And ‘what are deportations?’ he tells me. ‘Well, it is when the police go and grab your dad and send him to El Salvador.’ ‘Oh! But that is not going to happen to my daddy’ he says. ‘No,’ I say, ‘not right now ... because God is taking care of him, and then we hope in God that that will not happen.’ ‘But the president is going to give him papers, right?’ ‘Someday, God-willing.’ ‘Okay,’ he says” [#6, English translation]. “Here, since one does not have papers, it feels like one is hiding for doing nothing. Sometimes it’s hard because ... I mean, maybe, maybe some time! Maybe! ... we get a permit […] with a permit, one can be safer” [#7, English translation]. “People are scared of immigration and being deported. You know, people that don’t have papers, you know, it’s something I think very typical, because obviously there’s a lack of information” [#8]. “Now, more than ever, it’s a very scary time. A lot of people are working, and now it’s like, OK, well everyone who is working, ya’ll got a little chance. But if you are here and you’re on food stamps, if you’re on Medicaid, you’re gonna be one of the first ones out. You’re, once again, you’re a liability. See you’re not helping the problem. You’re, you know, adding to the problem is how I feel” [#12]. | |
| Fear of benefit use affecting immigration status: | “Sometimes I would like to go ask for the stamps, but [my husband] won’t let me because they won’t give us papers” [#6, English translation]. “I know people that called cancelled their benefits. Even when they were doing it, they were being told ‘No, it doesn’t affect you’ but they were still scared. They canceled it. But I also know that that is also because of misinformation because not all of these programs […] fall under the category that [...] would really make you not have a green card” [#10]. “The fear is even more intense now with a new law that the president passed that if you have ever benefited from any government benefits program or even applied for, something like that, you will be denied a green card. If I apply for a green card. That’s a new law. I think that was like last month. That has been in effect from last month. So that I think has frightened many mothers and some of them have cancelled their benefits” [#10]. “There are so many mothers in our communities who are not aware […and] have lost their benefits. Of course, cancelled their benefit because they are scared that it might deprive them from having a green card and a future” [#10]. “We believe that if you do food stamps, when you file for your parents or when you file for your siblings, you will be denied. Because [the government believes] that you’re getting assistance from the program and you still want to bring in someone to cost more money to the US government” [#11]. “Sometimes, yes. Because part of getting to be in America is that you can support yourself. So, if you come over here and run into hardship and you have to go to the state and say I need help. Then what’s to happen? Do they alert someone and say ok, well, now this person is in the system and, you know, maybe your education visa, or something maybe it’s getting denied the next time. You don’t know why. It’s because probably you spent 3 months on food stamps, and now you’re a liability instead of an asset to America” [#12]. | |
| Provider distrust: | “Sometimes [doctors] don’t worry about the people. That their work is what they do and that is it.” [#5, English translation] “It is not well known at that time who is on your side and who is not.” [#9, English translation]. “I’m not ashamed of where I come from, but I mean, [immigration status is] not something that I would discuss with my medical team. Because it’s still a lot of private stuff” [#12]. | |
| Racism and discrimination by society, healthcare providers, and benefits staff make immigrants feel unwelcome and hesitant to access care. | Unfair judgement: | “Sometimes [when] I go to public places, they look at me with my 4 children. I once heard a bad comment from a lady [saying], ‘She has 4 children to ask for stamps’” [#6, English translation]. “[Doctors] do judge and I think it’s solely based on what they’ve heard […] the fact that we don’t do medicine. You know, I don’t have a very lengthy medical history because I don’t utilize the doctor. And so, I guess it’s a little difficult to work with someone like that that you can’t say. You know, they asked me ‘when was the last time you’ve been to the doctor?’ I couldn’t tell you. ‘What is the last time you had a shot?’ I never had, you know. It’s things like that, I don’t know. I guess it waves these red flags for them or something.” [#12] |
| Interpersonal racism: | “Sometimes, one comes across people that are like, um, racists, to say it like that, and, it’s disconcerting talking with them and more so with one not knowing the language here” [#3, English translation]. “I felt that this did not sit well with the [benefits worker] that I did not understand her” [#7, English translation]. “I’ve learned from [racism]. When I, you know, going to these places and they’re treating me rude […] you learn from that experience. Learn a different way to talk to them. I’ve even gotten a proper voice. So, I’ve learned to speak English in a little bit more better way and then you learn how to change your voice. Soften it up, bring it down and watch your facial expressions. […] I have to coach myself because Haitians are a very expressive people and it could be taken wrong […] You kind of have to change yourself a whole heck of a lot. And it’s kind of hard because I’m used to being me. […] when you go into certain places, it’s definitely you gotta put on your suit. This is not the time to be you. This is the time to be trying to fight for your family, for these benefits, and you’re really at the mercy of them” [#12]. |
Theme 1: Healthcare system barriers impede immigrant quality of care and ability to enroll in benefits:
Language barriers: Healthcare providers and benefits offices do not use interpreters consistently. Some families rely on family members, even their children, to translate for them.
Cost: The healthcare system can be prohibitively expensive for immigrant caregivers. Rather than seeking care in large hospital settings, several families preferred low-cost clinics. “Maybe the child won’t be cured so quickly, but at least it’s not that expensive” (#1, Spanish).
Complexity of resource application: Immigrant caregivers found the resource application process to be complex, confusing, and difficult to navigate. One participant described seeking help with the Medicaid application from multiple sources and was ultimately denied. “They deny you on the one hand, they close you on the other, they leave you, it’s like a thousand walks on a tightrope” (#9, Spanish). Additionally, families described the WIC and school lunch applications as more straightforward and less intimidating than the SNAP application. The required interview for SNAP is intimidating and a deterrent for many families.
Theme 2: Immigration-related fears prevent families from accessing benefits and healthcare on behalf of their children when they need it:
Fear of familial separation: Immigrant caregivers fear that accessing care could lead to separation from family members. For example, when one participant moved to the US, she was told that “if you apply for housing and food stamps, then that is saying that you can’t take care of your children and you can risk having your children taken away” (#12). Another described undocumented parents sometimes “being afraid to take their children [to the hospital] for fear that [their children] will be taken” (#9, Spanish).
Fear of deportation: Immigrant caregivers fear that accessing care could risk deportation from the US. For example, one participant believed that accessing food stamps “is like a trap that the government makes […] they hook you so that you give your home information and they go and grab you” (#9, Spanish). Another described “[hearing] on the news that they were doing [immigration] raids [at clinics],” which “scared [her]” (#6, Spanish).
Fear that benefit use will affect immigration status: Immigrant caregivers fear that they will not be able to “fix their papers,” or advance in the immigration process if they use resources. As one participant described, “we stopped asking for [benefits] because […] they can’t help us fix papers if you ask for that help. So, […] we don’t have food stamps anymore. We don’t have WIC” (#2, Spanish). Dropping these benefits places a large financial strain on families.
Provider distrust: Immigrant parents feel uncomfortable discussing their immigration status with their providers. Immigrants “limit the kind of information they tell you because they don’t want that information to be held against them tomorrow. […] When the US government wants information about you, they will get it. So, you can’t blame people. They’re being careful” (#10).
Theme 3: Racism and discrimination by society, healthcare providers, and benefits staff make immigrants feel unwelcome and hesitant to access care:
Unfair judgment: Immigrant caregivers feel unfairly judged by society. Caregivers described struggles adjusting to life in the US, which are compounded by racism, xenophobia, and anti-immigrant rhetoric. As one participant described, “we are not bad people who come to make messes, who come to destroy other people. No! Nor do we come to take anyone’s job. We all have the same right to subsist. We all have the same right to work. But here, they think badly of us. But all you want to do is to help your children. We are not here to steal. We are not here to kill. We come to work so that we can live as human beings, as human beings only” (#2, Spanish).
Interpersonal racism: Immigrant caregivers perceive racism in interactions with public benefits offices and healthcare workers, preventing them from openly interacting with them. “Even though they work as public servants, they have their beliefs, their ideas, and sometimes they don’t help people, and they don’t make immigrants feel good; they make them feel less […] they want to look down at you. But don’t they know that we’re all human beings, that we all need to survive on this planet, that if we all helped each other, this would be a better world? That’s what they should see, not put up so many obstacles” (#2, Spanish).
Facilitators of Access to Healthcare and Public Benefits
Table 2 displays themes, subthemes, and representative quotations describing facilitators of access to healthcare and public benefits (in addition to those found in this text). Supplemental Table 4 includes original Spanish quotes. Themes with bulleted subthemes are found below.
Additional Representative Quotations Describing Immigrant Facilitators of Access to Healthcare and Public Benefits
| Theme | Subthemes | Representative Quotes |
|---|---|---|
| Healthcare system improvements would make immigrant families feel more comfortable and welcome, which may lead to increased access to care. | Recruiting a diverse workforce: | “WIC was an office there in town and there were Hispanic people. So, I knew them too when I went and talked... and talked to them. I knew them at the office. Then I would meet them at the Wal-Mart or HEB. I kind of felt more familiar. And not at the food stamps because they were only American” [#2, English translation]. “The people [at WIC] are very kind, very friendly, very helpful and, you know, encouraging” [#12]. |
| Language interpretation services: | “Thanks to God, lately the system has been changing a bit. It is “easier in that they are providing interpreters for us” [#3, English translation]. “If you don’t understand [English] here, you’ll be helped a lot. They’ve also helped me with the translation. They even have a tablet that tells you everything. I know how to take that option here. I think it’s very important. Everything about my son’s health and everything. So, I wanted take advantage of that option, and here in the hospital they help a lot” [#4, English translation]. | |
| Providing guidance on benefit application or qualification: | “Maybe a talk that makes sense about what’s really going to happen, or if it can happen, so that people don’t have to worry about immigration status on top of the disease. Because, well, we’re talking about her being stable right now, but imagine if she was really sick and I had to be worried because I applied for emergency Medicaid, that’s twice as hard” [#1, English translation]. “[The WIC application] is much more understandable [than SNAP or Medicaid], more accessible. The questions they ask are... kind of less complicated” [#3, English translation]. “[The social worker] gave me a program a paper that had all the information, the numbers and how I could start the process. She gave me a form. Papers so I could actually file for my benefits” [#10]. | |
| Legal services: | “Being in the hospital, it would be very good if, from the moment you arrive, they would say, ‘look, if you don’t have the possibility to pay, without the state knowing your status, we can give you these options.’ The ones they have already being here. The hard part is really making sure that people will come if they’re afraid. I mean, once you’re here, that’s the way it could work out. Just like the person with the little notebook who comes in to see how you’re going to pay, to have a person come in and say, ‘You can rest assured, because while you’re here, their records are not going to be released, nor yours as a parent. Focus on your child’s health.’ I tell you; the difficult thing is to get people to come here” [#1, English translation]. “There are a lot of people who don’t watch the news, who don’t know about the laws, how they are changing. So, it would be a good idea to pass on to someone in the places where there are immigrants and inform them about the laws of this country” [#2, English translation]. “Like [for] immigrant families that have citizens as children, [clinics] can encourage them that when they’re sick, they can come to the hospital. Even if they don’t have all the money, they can do like payment plan, or they can get government assistance” [#11]. | |
| Mental health screening and counseling: | “If they are in a case where they are going to deport a family member, the children are the ones who suffer the most. I would say a psychological support. If they realize, if they know that their dad is in the process... talk to them. Talk to a family. Give them emotional support, moral support, which is what families sometimes need” [#2, English translation]. “The only thing that can be done to help kids that are going through all that is […] to help their parents, because every child needs their mom and their dad. You need a village to raise a child. You cannot raise a child by yourself” [#11]. | |
| Hospital partnership with trusted sources of information may increase immigrant knowledge and quell immigration-related fear. | Provider partnership with media stations and low-cost clinics: | “Instead of the TV showing “if you ask for social assistance you won’t fix your status,” let them say ‘you won’t fix it anyway, ask for the help’ or something like that […] or in the low cost clinics to have some information that says, ‘if your child doesn’t get better here, or you don’t see improvement, you can go to such a place and you won’t have any problems’” [#1, English translation]. “My trusted source of information is the news, not friends, not Facebook, because all those are just opinions.” [#11] |
| Theme | Subthemes | Representative Quotes |
|---|---|---|
| Healthcare system improvements would make immigrant families feel more comfortable and welcome, which may lead to increased access to care. | Recruiting a diverse workforce: | “WIC was an office there in town and there were Hispanic people. So, I knew them too when I went and talked... and talked to them. I knew them at the office. Then I would meet them at the Wal-Mart or HEB. I kind of felt more familiar. And not at the food stamps because they were only American” [#2, English translation]. “The people [at WIC] are very kind, very friendly, very helpful and, you know, encouraging” [#12]. |
| Language interpretation services: | “Thanks to God, lately the system has been changing a bit. It is “easier in that they are providing interpreters for us” [#3, English translation]. “If you don’t understand [English] here, you’ll be helped a lot. They’ve also helped me with the translation. They even have a tablet that tells you everything. I know how to take that option here. I think it’s very important. Everything about my son’s health and everything. So, I wanted take advantage of that option, and here in the hospital they help a lot” [#4, English translation]. | |
| Providing guidance on benefit application or qualification: | “Maybe a talk that makes sense about what’s really going to happen, or if it can happen, so that people don’t have to worry about immigration status on top of the disease. Because, well, we’re talking about her being stable right now, but imagine if she was really sick and I had to be worried because I applied for emergency Medicaid, that’s twice as hard” [#1, English translation]. “[The WIC application] is much more understandable [than SNAP or Medicaid], more accessible. The questions they ask are... kind of less complicated” [#3, English translation]. “[The social worker] gave me a program a paper that had all the information, the numbers and how I could start the process. She gave me a form. Papers so I could actually file for my benefits” [#10]. | |
| Legal services: | “Being in the hospital, it would be very good if, from the moment you arrive, they would say, ‘look, if you don’t have the possibility to pay, without the state knowing your status, we can give you these options.’ The ones they have already being here. The hard part is really making sure that people will come if they’re afraid. I mean, once you’re here, that’s the way it could work out. Just like the person with the little notebook who comes in to see how you’re going to pay, to have a person come in and say, ‘You can rest assured, because while you’re here, their records are not going to be released, nor yours as a parent. Focus on your child’s health.’ I tell you; the difficult thing is to get people to come here” [#1, English translation]. “There are a lot of people who don’t watch the news, who don’t know about the laws, how they are changing. So, it would be a good idea to pass on to someone in the places where there are immigrants and inform them about the laws of this country” [#2, English translation]. “Like [for] immigrant families that have citizens as children, [clinics] can encourage them that when they’re sick, they can come to the hospital. Even if they don’t have all the money, they can do like payment plan, or they can get government assistance” [#11]. | |
| Mental health screening and counseling: | “If they are in a case where they are going to deport a family member, the children are the ones who suffer the most. I would say a psychological support. If they realize, if they know that their dad is in the process... talk to them. Talk to a family. Give them emotional support, moral support, which is what families sometimes need” [#2, English translation]. “The only thing that can be done to help kids that are going through all that is […] to help their parents, because every child needs their mom and their dad. You need a village to raise a child. You cannot raise a child by yourself” [#11]. | |
| Hospital partnership with trusted sources of information may increase immigrant knowledge and quell immigration-related fear. | Provider partnership with media stations and low-cost clinics: | “Instead of the TV showing “if you ask for social assistance you won’t fix your status,” let them say ‘you won’t fix it anyway, ask for the help’ or something like that […] or in the low cost clinics to have some information that says, ‘if your child doesn’t get better here, or you don’t see improvement, you can go to such a place and you won’t have any problems’” [#1, English translation]. “My trusted source of information is the news, not friends, not Facebook, because all those are just opinions.” [#11] |
Theme 4: Healthcare system improvements would make immigrant families feel more comfortable and welcome, which may lead to increased access to care.
Recruiting a diverse workforce: Having a provider from a similar background brings comfort to immigrant caregivers who are seeking care. Participants appreciated clinics and government offices with diverse staff. For example, the caregivers expressed a preference for going to WIC offices over SNAP offices as WIC offices had Hispanic employees, whereas SNAP offices tended to have “only Americans.” Latino participants also felt more comfortable going to “Hispanic clinics” because “everyone there speaks Spanish,” which “is the difference from hospitals” (#4, Spanish).
Language interpretation services: When providers use language interpretation services, immigrant caregivers receive better quality care. Families appreciated provision of language interpretation services, whether in-person or via video or telephone.
Providing guidance on benefit application and qualification: Immigrant caregivers desire guidance on benefit qualification and application forms. They are especially grateful when providers take the extra step to personally connect families to resources. For example, when speaking about the food bank, one participant explained that a social worker “went over and beyond by […] pulling up the list and actually called. She went a step ahead […] and said ‘hey you need to be at this place at Tuesday at nine o’clock in the morning at this church’” (#12).
Legal services: Immigrant caregivers felt that learning more about their rights as immigrants would be helpful to know what resources they can use on behalf of their children. Immigrants “make mistakes because of lack of information” (#3, Spanish). Specifically, immigrants feel more comfortable opening up to providers who explain the reason for asking personal questions and reassure them that this information is needed to help their child and will not affect their immigration status.
Mental health screening and counseling: Caregivers going through immigration-related hardships feel that emotional support would help them cope. Immigrants “hold it in, and that’s why it’s a high rate of suicide with immigrants coming here because they have no one to talk to […] and they feel they can’t make it. You can’t go home, you know, it leaves a person feeling helpless” (#12).
Theme 5: Hospital partnership with trusted sources of information may increase immigrant knowledge on benefit qualification and quell immigration-related fear:
Provider partnership with media stations and low-cost clinics: Immigrant caregivers felt that healthcare providers and benefits offices should partner with Spanish media stations or low-cost clinics to disseminate information. This partnership can reassure families who fear using benefits because of immigration-related concerns and encourage them to seek care when needed.
Gratitude
Theme 6: Almost all participants expressed gratitude for the resources available to their child in the US. Representative quotations can be found in Supplemental Table 5.
Discussion
This qualitative study identified barriers and facilitators in immigrant access to healthcare and public benefits on behalf of their children. Our study is novel in that it provides a clearer understanding of these barriers and facilitators directly from the perspective of immigrant caregivers of hospitalized children. Some identified barriers are consistent with the conceptual framework by Yang and Hwang.14 In this framework, general and immigrant-specific factors contributing to healthcare utilization are organized into enabling factors, predisposing factors, and macrostructural factors.
Enabling factors to immigrant resource utilization include financial resources, social resources (eg, sense of community), and availability of healthcare services (including language interpretation).14 Our study found many healthcare system barriers to these enabling factors. Participants expressed that interpreters were used inconsistently, despite widespread availability and evidence that these services improve quality of care and patient outcomes.18 Our findings also emphasize the need for guidance on benefit qualification and applications. Existing data show that application complexity and confusion about eligibility are barriers to benefit use.19 Multidisciplinary support from social work and case management is vital to identify needs and refer families to available resources. Furthermore, partnerships with community organizations specifically serving immigrant populations that provide benefit navigation services on-site in healthcare settings may further improve access for immigrant families. Caregivers in our study also noted that access to legal counseling and mental health support may improve public benefit utilization. Thus, bolstering medical-legal partnerships and referring interested families (children and their caregivers) to psychology may improve their quality of life.20
Predisposing factors for healthcare utilization include demographic factors, socioeconomic status, health beliefs, immigration status, and assimilation.14 Our study also highlights a striking level of immigration-related fear, including fear of familial separation, fear of deportation, and fear that resource use will affect their own immigration status or that of their children. Fear has been described as a barrier to resource use in immigrant populations.6,7,21 This fear is exacerbated by anti-immigrant policies that not only limit access to resources, but also create an environment that discourages benefit and healthcare use among immigrant populations who qualify.9,22–24 Since many immigrant families use Spanish-speaking media stations as their source of information, caregivers recommended that hospital and public benefit offices partner with media stations to disseminate factual information and counter misconceptions on public benefit use. This is especially important because immigration-related fear is sometimes exacerbated by the news and media. Providers may also refer families to Protecting Immigrant Families, an organization that offers educational material (in several languages) about benefit qualification.25 The American Academy of Pediatrics Immigrant Child Health Toolkit also contains educational material for healthcare providers about caring for CIF, such as clinical best practices, mental health considerations, public benefit options, and recommendations for addressing immigration-related fear.26
Finally, macrostructural factors such as government policy, healthcare system, political conditions, and immigrant reception in the US can impact healthcare utilization.14 Numerous studies have shown that discrimination, interpersonal racism, and systemic racism constitute barriers to benefit and healthcare use, negatively impacting child health and developmental outcomes.6,7,9,27,28 Our participants desired more acceptance from others, feeling safer and more respected when dealing with healthcare providers and government officials from similar racial and ethnic backgrounds. Thus, recruiting a diverse workforce may improve trust and comfort among immigrant families and is recommended by several medical organizations.29 In the absence of racial concordance among healthcare providers and patients, providers may use healthcare communication tools, the 5Rs, the RESPECT model, and the Implicit Association test to help address bias that contributes to discriminatory practices in healthcare settings and benefits offices.30–35
This study has limitations for consideration. First, we had a small sample size because of halted enrollment because of the coronavirus disease 2019 shut-down in March 2020. Although we feel confident in our reported themes, there is the possibility that new themes would have emerged if we were able to continue conducting interviews. Additionally, at the time of enrollment, there was increased national anti-immigrant rhetoric and a proposal to expand the definition of “Public Charge,” a test to determine whether certain immigrants are likely to become “primarily dependent on the federal government for subsistence” when applying for specific immigration statuses.36 Although the expansion of Public Charge has been revoked, immigration-related fear as a barrier to benefit use has been described even before expansion proposal. We also conducted our project at a single academic hospital in the inpatient setting. Thus, identified barriers in access to care may be underestimated, given that our participants were ultimately able to seek care. Finally, we only included English- and Spanish-speaking participants and did not collect demographic data to ensure participant privacy. Although some metrics consider Houston the most diverse city in the nation,37 our participants’ perceptions may not be generalizable to all immigrant populations, especially in light of our small sample size and the large heterogeneity of the US immigrant population. Larger studies are needed to identify barriers in accessing healthcare that are specific to country of origin or circumstance.
Conclusions
Immigrant caregivers of hospitalized children described healthcare system barriers, immigration-related fears, and racism as impediments to accessing healthcare and public benefits. Caregivers offered several ways in which providers can improve access to care. Further research is needed to assess the efficacy of identified interventions.
Acknowledgments
We thank the patient families who took the time to participate in our study; and Dr Ricardo Quiñonez and the division of Pediatric Hospital Medicine for the opportunity to conduct this research.
Material preparation and data collection were performed by Drs Murillo, Espinoza-Candelaria, Dr Jaramillo, and Dr Domínguez; analysis was performed by Drs Masciale, DiValerio Gibbs, and Asaithambi; the first draft of the manuscript was written by Dr Masciale and edited by all authors; and all authors read and approved the final manuscript and contributed to the study conception and design.
FUNDING: No external funding.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest relevant to this article to disclose.
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