BACKGROUND AND OBJECTIVES:

Rehabilitation after a child’s traumatic brain injury (TBI) occurs in hospital, community, and school settings, requiring coordination of care and advocacy by parents. Our objective was to explore Hispanic parents’ experiences during child’s transitions of care after TBI.

METHODS:

We conducted this qualitative study using semistructured interviews. We used a convenient sample of Hispanic parents of children hospitalized for a TBI in a single level I trauma center. Thematic content analysis using iterative deductive coding and triangulation with clinical data was conducted to identify barriers and facilitators for transitions of care.

RESULTS:

Fifteen mothers, mostly from rural areas and with limited English proficiency, participated in the study. Obtaining outpatient rehabilitation was difficult. Barriers included lack of therapists and clinical providers close to home, worsened by insufficient transportation and other support resources; poor understanding of child’s illness and treatments; and suboptimal communication with clinicians and school administrators. Facilitators included interpreter use, availability of Spanish written information, and receipt of inpatient rehabilitation. Parents of patients discharged to inpatient rehabilitation reported that observing therapies, receiving school discharge plans by hospital-teachers, and coordination of care were facilitators to access outpatient treatments and to support school return. Parents of children discharged from the hospital from acute care reported need of legal services to obtain school services.

CONCLUSIONS:

Hispanic parents, especially those with limited English proficiency, can face significant challenges accessing TBI outpatient rehabilitation and school resources for their children. Although barriers are multifactorial, efforts to improve communication, parent’s TBI education, and care coordination during transitions of care may facilitate a child’s reintegration to the community and school.

Traumatic brain injury (TBI) is a leading cause of acquired disability in children.1,2  Rehabilitation after TBI improves function3 ; however, timely initiation and continuation of therapies after hospital discharge is critical because most functional recovery happens within the first year after injury.1,4  Parents play an important role managing their child’s transition of care from inpatient to outpatient settings and supporting community and school reintegration. However, care transitions and school reintegration are challenged by the unexpected nature of the TBI and lack of emotional and practical support after discharge from the hospital.57  The report to Congress on The Management of Traumatic Brain Injury in Children8  identifies gaps in provision of coordinated care between hospital, community, and school settings. It calls for work to improve timely provision of outpatient care and for programs to optimize transitions from inpatient to outpatient settings.

Hispanic children are at risk for poor outcomes after TBI. Compared with their non-Hispanic white peers, they have higher disability and lower quality of life 3 years after injury,9  receive fewer outpatient rehabilitation treatments,10  and have less access to services because of insurance and language barriers.11  Despite the increased risk for poor outcomes among Hispanic children, their inclusion in TBI studies is limited. Understanding Hispanic families’ experiences after a child’s TBI hospitalization is important because more than a quarter of US children are Hispanic, and ∼5% of them experience a significant TBI before 18 years of age.12  In our study, we aim to understand Hispanic parents’ experiences transitioning to outpatient care after their child’s TBI hospitalization. It explores barriers and facilitators for initiation and continuation of outpatient treatments and school reintegration.

We conducted a qualitative study using thematic content analysis of semistructured interviews. After institutional review board approval, we recruited a convenience sample of parents of Hispanic children (0–17 years of age at the time of TBI) hospitalized for 24 hours or longer at a single level I trauma center between October 2013 and June 2015. We excluded parents whose contact information was not available and whose primary language was not English or Spanish. We approached Hispanic parents who were still active participants in a previous TBI outcomes cohort study13  for children admitted during 2013 to 2014 (N = 10). To increase our sample, we also contacted eligible Hispanic parents of children hospitalized during 2015 (N = 14). We initiated contact by mail, followed by a phone call a week later; gave opportunities for questions; and obtained consent. We conducted all study procedures in parents’ preferred language.

We developed a semistructured interview guide based on previous research on access to post–acute TBI rehabilitation in health care and school settings,2,3  studies on barriers to care among Hispanic children with other chronic conditions,1416  and Gelberg-Andersen’s model of access to care among vulnerable populations.17  The telephone interview guide had a set of open-ended questions and probes to explore parents’ understanding of their child’s TBI, experiences transitioning to outpatient care, and return to school. We provide examples of these questions in Table 1. We translated the interview guide to Spanish and modified it on the basis of comments from 2 Spanish-speaking Hispanic parents contacted through the Brain Injury Alliance. A single female bilingual and bicultural Hispanic physician conducted all telephone interviews using the interview guide while allowing discussions to diverge if necessary, to promote richer descriptions (Table 1). Interviews had a mean duration of an hour (45–80 minutes). We provided an institutional review board–approved incentive ($50.00 gift card) to parents to thank them for their time and participation in the study.

TABLE 1

Selected Interview Questions and Probes

Selected Interview Questions
Questions 
 Thinking about the time your child was discharged from the hospital, how much did you understand about your child’s injury and treatments? 
 Were there any parts of the doctors’ and nurses’ explanations that were difficult to understand? Why? 
 Did you receive any written instructions and/or education materials? And were these in your preferred language? 
 Once your child was discharged from the hospital, how did you continue the treatment recommended by the doctors? 
 Did you feel confident about your abilities to care for your child at home? What about your abilities to schedule and initiate the recommended therapies? 
 Did your child complete the recommended treatments? Did you feel that the treatments were adequate? 
 How was going back to school for your child? 
Probes 
 In your own words, could you describe your child’s injury? 
 Was there anything that made it easier to understand your child’s injuries and the treatments? 
 Did you have any problems with the doctors, nurses, or therapists because they did not speak your language? 
 Did you understand what was going on with your child’s therapies? 
 Was it easy to schedule the recommended therapies? What made it easy or difficult? Did someone help you schedule your child’s visits? 
Selected Interview Questions
Questions 
 Thinking about the time your child was discharged from the hospital, how much did you understand about your child’s injury and treatments? 
 Were there any parts of the doctors’ and nurses’ explanations that were difficult to understand? Why? 
 Did you receive any written instructions and/or education materials? And were these in your preferred language? 
 Once your child was discharged from the hospital, how did you continue the treatment recommended by the doctors? 
 Did you feel confident about your abilities to care for your child at home? What about your abilities to schedule and initiate the recommended therapies? 
 Did your child complete the recommended treatments? Did you feel that the treatments were adequate? 
 How was going back to school for your child? 
Probes 
 In your own words, could you describe your child’s injury? 
 Was there anything that made it easier to understand your child’s injuries and the treatments? 
 Did you have any problems with the doctors, nurses, or therapists because they did not speak your language? 
 Did you understand what was going on with your child’s therapies? 
 Was it easy to schedule the recommended therapies? What made it easy or difficult? Did someone help you schedule your child’s visits? 

Interviews were audio recorded and transcribed in the language in which the interview was done. After data collection was completed, a multidisciplinary group of researchers, including 3 female physicians (2 of them Hispanic and bilingual and a third a non-Hispanic pediatric physiatrist) and 1 bilingual non-Hispanic female social worker with social work experience in Latin America, performed iterative analyses. For analyses, transcripts were deidentified, and 3 researchers independently coded each of the interviews in the language in which the interview was done. We used a deductive coding approach starting with broad general code categories, based on Gelberg and Andersen’s conceptual model and modified for our population of interest. We discussed and resolved discrepancies in coding and employed an inductive coding process to develop subcodes derived from the data. We reviewed generated codes as a group and modified the codebook by consensus as needed.

We triangulated interview data with medical record data to provide context of injury and rehabilitation needs. Medical record data included child’s age, sex, injury severity, and discharge disposition (home versus inpatient rehabilitation) and parent’s language. We used the United States Department of Agriculture 2013 Rural-Urban Continuum Codes to determine rurality.18  We performed analyses using Dedoose software.19 

Of the 24 parents approached, 15 consented for participation: 9 from the previous cohort study and 6 from the new hospitalized cohort. We interviewed parents between 3 and 28 months after injury (median time, 12 months). All participant parents were female, self-identified as “other” race, and 73% had limited English proficiency (LEP). Half of the families lived in rural areas. Most children were male, 60% were school age (5 years or older) at the time of injury, and 66% were insured by Medicaid. Most children had moderate and severe TBI, and 26% of them were discharged to inpatient rehabilitation (Table 2).

TABLE 2

Patient and Parent Characteristics

CharacteristicsValue
Child  
 Child sex (N = 15), n (%)  
  Female 5 (33.3) 
  Male 10 (66.7) 
 Child’s age, n (%), y  
  <5 6 (40) 
  5–10 2 (13.3) 
  11–13 2 (13.3) 
  14–17 5 (33.3) 
 Interview time after injury (median IQR25–75) (range), mo 12 (7–24) (3–28) 
Parent, n (%)  
 Parent sex, female 15 (100) 
 LEP 11 (73) 
 Residence  
  Urban 7 (46.7) 
  Rural 8 (53.3) 
 Insurance type  
  Private 4 (26.7) 
  Public 10 (66.7) 
  No insurance 1 (6) 
 Severity of injury (AIS)  
  2 1 (6.7) 
  ≥3 14 (93.3) 
 Inpatient rehabilitation  
  Yes 4 (26.6) 
CharacteristicsValue
Child  
 Child sex (N = 15), n (%)  
  Female 5 (33.3) 
  Male 10 (66.7) 
 Child’s age, n (%), y  
  <5 6 (40) 
  5–10 2 (13.3) 
  11–13 2 (13.3) 
  14–17 5 (33.3) 
 Interview time after injury (median IQR25–75) (range), mo 12 (7–24) (3–28) 
Parent, n (%)  
 Parent sex, female 15 (100) 
 LEP 11 (73) 
 Residence  
  Urban 7 (46.7) 
  Rural 8 (53.3) 
 Insurance type  
  Private 4 (26.7) 
  Public 10 (66.7) 
  No insurance 1 (6) 
 Severity of injury (AIS)  
  2 1 (6.7) 
  ≥3 14 (93.3) 
 Inpatient rehabilitation  
  Yes 4 (26.6) 

AIS, Abbreviated Injury Score; IQR, interquartile range.

Identified themes were grouped in 3 main categories: (1) structural barriers and facilitators during transitions of care; (2) parents’ understanding of TBI and treatments; and (3) parent–provider communication and partnership during treatment. We present subthemes with representative quotes under each of those thematic categories.

Half of our study sample lived in rural areas. These parents reported their child required follow-up care in centralized urban settings. For them, in addition to the long distance to access care, transportation difficulties and lack of familiarity with urban areas magnified the reported barriers (Table 3).

TABLE 3

Representative Quotes of Structural Barriers and Facilitators During Transitions of Care

Barriers 
 Geographical barriers 
  “I brought my child [to therapies], but every time I went I was very nervous because it was so far away.” 
  “I tried to make the appointments; but I don’t know how to drive. My husband was working, and we didn’t qualify for transport because my son could walk.” 
 Barriers because of immigration status 
  “My child had problems with drugs and stopped going to school. I asked for help, but they always asked me, ‘Is he US born?’ And because he was not, they didn’t help us.” 
 Return to school 
  “His services were based on behavior; they put him in an alternative school, but his behavior didn’t improve. It got worse. Finally, after 2 years and after hiring a lawyer, they transitioned him [back to a general school] I felt the school treated him differently because he was Mexican.” 
  “[The school administrators] sent us to court, to investigate us. They thought we did not take care of him. After going to court they saw that it was not our fault.” 
Facilitators: inpatient rehabilitation 
 Facility-based educators 
   “At inpatient rehabilitation, the hospital school teacher gave information, so everybody [at school] was aware of my child’s accident. They got all the information and were able to work with him at the school.” 
 Coordination of care 
  “We had a bunch of appointments to schedule, like for 4 weeks. The care coordinator [from the inpatient rehabilitation unit] helped us schedule all [appointments] in a couple of days so we didn’t keep spreading out and stressing my son.” 
Barriers 
 Geographical barriers 
  “I brought my child [to therapies], but every time I went I was very nervous because it was so far away.” 
  “I tried to make the appointments; but I don’t know how to drive. My husband was working, and we didn’t qualify for transport because my son could walk.” 
 Barriers because of immigration status 
  “My child had problems with drugs and stopped going to school. I asked for help, but they always asked me, ‘Is he US born?’ And because he was not, they didn’t help us.” 
 Return to school 
  “His services were based on behavior; they put him in an alternative school, but his behavior didn’t improve. It got worse. Finally, after 2 years and after hiring a lawyer, they transitioned him [back to a general school] I felt the school treated him differently because he was Mexican.” 
  “[The school administrators] sent us to court, to investigate us. They thought we did not take care of him. After going to court they saw that it was not our fault.” 
Facilitators: inpatient rehabilitation 
 Facility-based educators 
   “At inpatient rehabilitation, the hospital school teacher gave information, so everybody [at school] was aware of my child’s accident. They got all the information and were able to work with him at the school.” 
 Coordination of care 
  “We had a bunch of appointments to schedule, like for 4 weeks. The care coordinator [from the inpatient rehabilitation unit] helped us schedule all [appointments] in a couple of days so we didn’t keep spreading out and stressing my son.” 

Parents of children discharged directly home from acute hospital settings reported lack of coordinated support and inadequate communication between the hospital and the school systems. Legal assistance was required by 2 families to facilitate communication with the school. In one case, this was initiated by the parents and in another by the school. One of these parents also reported feeling mistreated by the school administration because of their ethnic background. Use of legal services in this case was necessary to support parents’ advocacy efforts for their child’s needs. In contrast, parents of children who received inpatient rehabilitation, regardless of their English proficiency, reported sufficient communication between medical providers and school staff. They specifically identified hospital-based educators as facilitators for return to school. For them, hospital-based educators bridged communication between medical and school staff, facilitating continuity of care and relieving parents of additional stress.

Lack of access to services because of migrant status was also reported by 1 parent. In this case, the child received initial therapies through the school system but was unable to obtain additional mental health services outside of school. Once this patient lost the support of the school system, services were not available to him or his family.

When we asked parents to explain in their own words their understanding of their child’s TBI, most had difficulty describing their child’s TBI diagnosis, referring to it simply as a “head injury.” They also had difficulty understanding the association between the TBI and symptoms and recognizing rehabilitation therapies as treatment modalities. Understanding of behavioral symptoms was particularly difficult for some parents, who felt the behavior was intentional rather than a result of the injury. Many parents with LEP felt there was a lack of reassurance about prognosis and desired follow-up brain imaging to obtain information about their child’s recovery. This need was reported despite follow-up and reassurance from their treating physicians. Parents viewed brain imaging as a robust source of information (Table 4).

TABLE 4

Representative Quotes of Parents Understanding of TBI and Treatments

Barriers 
 Comprehension and retention of information 
  “One part of his brain was injured, but I don’t know more than that.” 
  “Treatment? He didn’t receive any treatment, just physical therapy.” 
  “I didn’t understand that the head injury was causing some of the things [signs and symptoms], it was confusing.” 
  “He changed the way he acted. He was more active, disrespectful, and mean.” 
 Lack of reassurance about prognosis and desire for more imaging studies 
  “I wanted to see if the clots and the fracture disappeared or not; but they just told me that for sure it did, and they never checked. I was very unhappy with their response.” 
Facilitators 
 Provision of written information 
  “I was given this book [in English], about children with TBI. It helped a lot. It talked about what to expect, follow-up appointments, and people to call if you had questions.” (English-proficient parent) 
  “Most of the instructions were written in Spanish. The therapy exercises also had pictures, which made it very easy to follow the instructions.” (Parent with LEP) 
 Observation and participation during processes of care (both quotes from parents of children who received inpatient rehabilitation) 
  “I understood well because I was there. I was in the room with [my child] every time the doctors came, so they would talk to me.” 
  “I was all the time close to [my child]. I saw the exercises the nurses did and all the treatments he received. I knew what to do at home.” 
 Bilingual providers 
  “I didn’t understand and didn’t know what to do, until the last psychologist, who spoke Spanish explained to us. That helped a lot.” 
Barriers 
 Comprehension and retention of information 
  “One part of his brain was injured, but I don’t know more than that.” 
  “Treatment? He didn’t receive any treatment, just physical therapy.” 
  “I didn’t understand that the head injury was causing some of the things [signs and symptoms], it was confusing.” 
  “He changed the way he acted. He was more active, disrespectful, and mean.” 
 Lack of reassurance about prognosis and desire for more imaging studies 
  “I wanted to see if the clots and the fracture disappeared or not; but they just told me that for sure it did, and they never checked. I was very unhappy with their response.” 
Facilitators 
 Provision of written information 
  “I was given this book [in English], about children with TBI. It helped a lot. It talked about what to expect, follow-up appointments, and people to call if you had questions.” (English-proficient parent) 
  “Most of the instructions were written in Spanish. The therapy exercises also had pictures, which made it very easy to follow the instructions.” (Parent with LEP) 
 Observation and participation during processes of care (both quotes from parents of children who received inpatient rehabilitation) 
  “I understood well because I was there. I was in the room with [my child] every time the doctors came, so they would talk to me.” 
  “I was all the time close to [my child]. I saw the exercises the nurses did and all the treatments he received. I knew what to do at home.” 
 Bilingual providers 
  “I didn’t understand and didn’t know what to do, until the last psychologist, who spoke Spanish explained to us. That helped a lot.” 

Provision of written information to complement oral instructions was reported by parents as an important facilitator for understanding and retaining information about TBI and treatments. However, these reports came primarily from parents who spoke English and who were able to use information provided in English. Among parents with LEP, only 1 parent reported receipt of TBI written materials in Spanish. This parent specifically identified complementary pictorial images as useful to understand therapies. Having access to bilingual providers was also reported as helpful to better understand treatments. Independently from English proficiency, among parents of children discharged to inpatient rehabilitation, being able to observe and participate during processes of care facilitated understanding of their child’s care needs and rehabilitation therapies.

Communication and partnership between parents, physicians, and therapists were factors that differed greatly between Hispanic parents with and without LEP (Table 5). Parents who spoke English reported high levels of satisfaction when communicating with their child’s medical providers, good rapport, and high levels of gratitude.

TABLE 5

Representative Quotes of Parent–Provider Communication

Barriers 
 Limited use of interpretation and paucity of written information in Spanish 
  “I use interpreter services sometimes, when I need to get all the information.” 
  “Not all the information was in Spanish, the part of the appointments, yes, but the rest not; I understood a little bit of it in English.” 
  “After the last surgery, the doctor was rushing, he didn’t even talk to me, he didn’t come out to explain how the surgery went, nothing. I was so nervous.” 
 Sense of isolation during treatment 
  “I was there 6 nights and 6 days, and nobody came to help me stay calm, no one said ‘this is going to be OK, a TBI recovers this or that way,’ nothing! I was so anxious, I didn’t know what was happening, what I was going to do afterwards…how I was going to communicate…I felt so lonely.” 
Facilitators 
 English proficiency (all quotes by parents proficient in English) 
  “They took the time to sit down and explain things. They showed [my daughter] everything she needed to do. They did not run her, they used the whole time. They didn’t rush us out the door.” 
  “Despite my Hispanic origin, the therapist that took care of my son (who was a person from this country, American I mean) she was so respectful with me and with my child, and she saw us like equals.” 
Barriers 
 Limited use of interpretation and paucity of written information in Spanish 
  “I use interpreter services sometimes, when I need to get all the information.” 
  “Not all the information was in Spanish, the part of the appointments, yes, but the rest not; I understood a little bit of it in English.” 
  “After the last surgery, the doctor was rushing, he didn’t even talk to me, he didn’t come out to explain how the surgery went, nothing. I was so nervous.” 
 Sense of isolation during treatment 
  “I was there 6 nights and 6 days, and nobody came to help me stay calm, no one said ‘this is going to be OK, a TBI recovers this or that way,’ nothing! I was so anxious, I didn’t know what was happening, what I was going to do afterwards…how I was going to communicate…I felt so lonely.” 
Facilitators 
 English proficiency (all quotes by parents proficient in English) 
  “They took the time to sit down and explain things. They showed [my daughter] everything she needed to do. They did not run her, they used the whole time. They didn’t rush us out the door.” 
  “Despite my Hispanic origin, the therapist that took care of my son (who was a person from this country, American I mean) she was so respectful with me and with my child, and she saw us like equals.” 

Parents with LEP reported suboptimal communication with clinicians, especially during brief communication encounters. During these encounters, parents reported limited use of interpretation resources and reluctance to request interpreter services even when gaps in communication were present. When asked about communication specifically at the time of discharge, parents with LEP reported consistent use of interpreter services when receiving verbal discharge instructions but gaps in provision of Spanish written information. Most of the written discharge instructions, as well as the TBI education resources, were provided in English. Among this group of parents, we also identified a sense of isolation during treatment.

We are the first to describe Hispanic parents’ experiences during transitions of care after TBI hospitalization of their children. In this study, we outline distinct barriers for accessing TBI outpatient rehabilitation such as LEP, low levels of health literacy, and low self-efficacy to navigate complex health care environments. We also describe gaps in transition to school especially among children discharged directly from the acute hospital for whom parents are the primary advocates for their child’s school needs. We also describe facilitators for transitions of care. In addition to known facilitators such as use of interpreters, use of written materials in Spanish, and bilingual providers, we found that receipt of inpatient rehabilitation was a facilitator to access outpatient care, understand treatments, and support school reintegration.

Acute inpatient rehabilitation, in addition to diagnosing and treating functional impairments, focuses on family education, training, and support. An important part of inpatient rehabilitation is formulating plans for follow-up care, school reentry, and rehabilitative care after discharge.20  Quality of care indicators for pediatric rehabilitation care for children with TBI21,22  emphasize the importance of family-centered care and support for school reentry and community reintegration, needs specifically reported by parents in our study.

Access to services through the school is particularly important for this group of children because all children can enroll in school, but use of other services may not be possible because of their immigration status. Although noncitizen children are eligible for Medicaid services in our state, families have to enroll in the service, exposing their immigration status to the state government. New immigration policies, such as the “public charge” policy, may affect families’ willingness to enroll in public programs. In addition, not all providers accept Medicaid, limiting options for care for this group of children,11  resulting in a higher dependence on school-based services for continued treatment.

Another aspect of family-centered transition processes from hospital settings to home is patient family-tailored discharge education.23  This need is not unique to Hispanic parents; however, the scarcity of written Spanish TBI education resources may pose additional difficulties to adequately address the educational needs of Hispanic families. Counties in our state, with a large proportion of Hispanic population, have LEP rates of 29%, >3 times the national average.

Other barriers previously described among non-Hispanic groups, such as suboptimal communication during clinical encounters, lack of coordination during transitions of care, and limited access to services because of geographical barriers, were also reported by Hispanic parents. However, some differences are worth describing. Unlike Hispanic parents, non-Hispanic parents describe adequate opportunities for communication. Their concern is primarily around insensitivity of clinical providers, exemplified by communication in public places and discussion of finances during the acute phase.24  Limited access to rehabilitation services for patients living in rural areas and inadequate coordination between clinicians and schools, especially for children who are discharged from the hospital from acute care facilities, are shared barriers between Hispanic and non-Hispanic parents.6  But the emotional distress expressed by Hispanic parents may indicate low self-efficacy to access services, given their unfamiliarity with the system and, in some cases, their migration status.

Isolation due to lack of communication during the acute phases of TBI care seems to be distinct to the group of parents with LEP. For them, inconsistent use of interpretation limits understanding of TBI and treatments and rapport with clinical providers. In agreement with our findings, previous studies demonstrate low use of interpreter services even in critical areas such as the ICU.25  Efforts to encourage use of interpretation among parents and clinical providers, regardless of the duration and the perceived importance of the interaction, may decrease isolation and improve support to LEP families. If in-person interpretation is not possible, video interpretation can facilitate these efforts. It is more accessible, enables communication, and improves parents’ understanding of illness with high levels of satisfaction.26 

Beyond interpretation, the health literacy level of Hispanic parents, especially among those who are recent immigrants, is a key factor in parents’ understanding of their child’s needs after TBI. Previous research describes a larger effect of health literacy compared with language proficiency for understanding health explanations, such as dosing of medications.27  Hispanic individuals in the United States have the lowest educational attainment of all racial and ethnic groups; only 67% of Hispanic individuals have completed high school, compared with 92% for non-Hispanic white and 89% of non-Hispanic African American individuals. Hispanic individuals are also 2 times more likely to have lower levels of health literacy compared with their non-Hispanic peers.28,29  These factors may help explain Hispanic parents’ limited understanding of their child’s brain injury, prognosis, and therapies, even among those who had access to interpretation. Our findings support use of communication strategies that can adapt to the health literacy needs of some Hispanic parents. Use of language-concordant written information and pictorial images can reinforce and facilitate understanding of concepts.30  This resource is currently underused and can accentuate disparities in communication and knowledge for Hispanic parents with LEP. Caregiver teach-back as part of hospital-to-home transition instructions can also improve home management skills.31 

Our study has several limitations. It is retrospective, and in some instances, the child’s TBI occurred up to 28 months before the interview. We did not find differences in responses by time after injury. However, recall bias is always possible. Our sample size was small, and the main differences we found were primarily due to language proficiency and receipt of inpatient rehabilitation. In addition, our study sample was representative of Hispanic individuals living in a state where the majority of Hispanic persons are from Mexico and Central America; therefore, our findings may not be generalizable to Hispanic groups from South America and the Caribbean. We did not collect information on parental education, thus relying on census data to describe lower levels of education among Hispanic individuals, particularly recent immigrants from Mexico and Central America. We also did not ask about place of birth or immigration status of the parents. When parents disclosed place of birth or immigration information during their interview, we only included these data when pertinent to the study findings. We do not describe patient-specific details along with representative quotes because of the small sample size and possibility for exposing identifiable information. This study included only participants who were hospitalized at a single level I trauma center; the experiences of children hospitalized at other institutions may be different.

In conclusion, Hispanic parents, especially those with LEP, may experience significant barriers to initiating and continuing rehabilitation for their children after TBI. Low levels of health literacy and self-efficacy may hamper understanding of TBI symptoms, recognition of behavioral sequelae, and access to outpatient care as well as school services. Importantly, some of these barriers can be addressed at both the individual and institutional levels. Consistent use of interpretation, bidirectional communication, and language-concordant TBI education materials may improve parents’ knowledge and empower them to advocate for their child’s needs. At the institutional level, efforts to provide coordinated support during transitions of care to outpatient settings, including return to school, may facilitate community reintegration and long-term adherence to treatment.

Drs Jimenez and Rivara conceptualized and designed the study and drafted the initial manuscript; Drs Jimenez, Fuentes, and Frias-Garcia conducted the initial analyses and reviewed and revised the manuscript; Dr Moore reviewed and revised the manuscript; Ms Crawley advised data collection instruments and critically reviewed the manuscript; and all authors approved the final manuscript as submitted.

FUNDING: Supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (grant K23HD078453-04 to Dr Jimenez). Funded by the National Institutes of Health (NIH).

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.