Communication of Hospital-to-Home Transition Information for Pediatric Patients of Parents/Caregivers with Limited English Proficiency or Health Literacy Deficit: An Integrative Review

  


    
References 

    
Research Design/ 

    
Study Setting 

    
Participants 

    
Main Findings 

  

  


    
Data Collection 

    
Prevalence and    characteristics 

    
Transition information    delivery 

    
Impact on health outcome  

    
Effectiveness of    interventions 

  

  


    
[14] USA 

    
Retrospective review of electronic data 

    
State-wide database 

    
18,364 Infants 

    
LEP 

    
  

    
UHR 

    
  

  

  


    
Others 

  

  


    
[26] USA 

    
Retrospective cohort study 

    
21 Hospitals 

    
608 Completed surveys (74.8%) 

    
LEP 

    
  

    
Engagement 

    
  

  

  


    


  

  


    
[37] USA 

    
Retrospective chart review and electronic medical    record query 

    
A tertiary children’s hospital 

    
240 (4% randomised selection) Patients > 1    overnight stay 

    
LEP 

    
Written 

    
  

    
Use of template and discharge service 

    


  

  


    
Heath Literacy 

    
Component 

    


  

  


    
[7] USA 

    
Prospective direct structured observations

    
A large children’s hospital 

    
140 discharge encounters 87 Nurses 

    
LEP 

    
Written 

    
  

    
  

    


  

  


    
Component 

    


  

  


    
[8] USA 

    
Quality improvement project 

    
A large children’s hospital 

    
540 patients with LEP families 

    
  

    
  

    
  

    
Translated discharge instructions of preferred    language 

    


  

  


    


  

  


    
[10] USA 

    
A retrospective cohort chart review 

    
A tertiary pediatric medical centre 

    
136 Patients underwent Adenotonsillectomy 

    
LEP 

    
  

    
ED Visit 

    
  

    


  

  


    
Characteristics 

    
Others 

    


  

  


    
[31] USA 

    
Mixed-methods 

    
A tertiary hospital, NICU 

    
27 Healthcare providers 19 Parents 

    
  

    
  

    
Engagement 

    
Question prompt lists 

    


  

  


    
Comprehension 

    


  

  


    
[36] USA 

    
Retrospective cohort study 

    
A tertiary pediatric ED 

    
63,601 Index visits < 21 years 

    
LEP 

    
  

    
ED visit 

    
  

    


  

  


    
UHR 

    


  

  


    
[52]    Australia 

    
A qualitative study 

    
A tertiary children’s hospital 

    
Patients < 16 years 

    
LEP 

    
  

    
ED Visit 

    
  

    


  

  


    
Direct observations

    
31 Discharge encounters 

    
 

    
 

    
UHR 

    
 

    


  

  


    
Interviews 

    
20 Caregivers 12 Nurses 

    


  

  


    
Medical records review 

    


  

  


    
[17] USA 

    
Quantitative comparison study 

    
An urban public hospital 

    
192 English/Spanish speaking parents with = 1    daily discharge medication 

    
Heath Literacy 

    
  

    
  

    
  

    


  

  


    


  

  


    
Gold et al. -2020 USA 

    
Qualitative focus-group-based study 

    
A children’s hospital 

    
12 native English vs. 12 native 

    
LEP 

    
  

    
  

    
  

    


  

  


    
Spanish speaking parents of children with complex    medical condition 

    


  

  


    
[18] USA 

    
Cross-sectional direct observational study 

    
A tertiary children’s hospital 

    
103 discharge encounters

    
LEP 

    
Medication literacy/ 

    
  

    
  

    


  

  


    
Component

    


  

  


    
[11] USA 

    
Mixed-methods study 

    
200 Children’s Hospital Association language    services 

    
31 Children’s Hospital Association language    services; 22 Children’s 

    
Organisational perspective 

    
  

    
  

    
  

    


  

  


    
Online survey Online environment scan 

    
Hospital Association translation policy 

    


  

  


    
[13] USA 

    
Quantitative– Survey 

    
Multi-site NICU of tertiary hospital 

    
137 participants 

    
Heath Literacy 

    
  

    
Discharge readiness 

    
  

    


  

  


    


  

  


    
[28] USA 

    
Quantitative– Survey 

    
A children’s hospital 

    
Day surgery; 66 (79.5%) Parents with limited    English proficiency randomly assigned to Intervention (n = 31) and    Control (n = 35) 

    
  

    
  

    
  

    
Audio recorded discharge instruction card 

    


  

  


    


  

  


    
[29] 

    
Quantitative–Cohort study 

    
NICU of a tertiary pediatric, women and infants    hosptial 

    
Immigrant (n=176) and native (n=556) mothers of    preterm infants 

    
LEP 

    
  

    
Discharge readiness 

    
  

    


  

  


    
Characteristics 

    


  

  


    
[32] USA 

    
A retrospective analysis of all discharges 

    
A NICU of tertiary children’s hospital 

    
1,307 discharged families 

    
LEP 

    
  

    
Discharge readiness 

    
  

    


  

  


    


  

  


    
[35] USA 

    
A retrospective analysis of discharge summary 

    
An urban non-freestanding children’s hospital 

    
Of 4,044 eligible patients selected 100/EP vs.    100/LEP 

    
  

    
Component 

    
  

    
  

    


  

  


    


  

  


    
[50] USA 

    
Prospective observational study 

    
A tertiary children’s hospital ED 

    
English vs. Spanish-speaking parents

    
Characteristics 

    
  

    
  

    
Nurse-developed pictographs & discharge    instruction 

    


  

  


    


  

  


    
[12] USA 

    
Retrospective analysis 

    
A tertiary children’s hospital 

    
2,047 infants’ weight <2500 g 

    
LEP 

    
Written 

    
Others 

    
  

    


  

  


    


  

  


    
[20] USA 

    
Qualitative – Observations 

    
ED of a tertiary children’s hospital 

    
101 discharge communication interactions from 47    LEP patient visits 

    
  

    
Written 

    
  

    
Video-recorded ED visits/Professional interpreter    use 

    


  

  


    
Component 

    


  

  


    
[24] USA 

    
Quantitative– RCT Quiz & Survey 

    
A medical centre 

    
20 LEP parents need interpreter of children 

    
  

    
  

    
  

    
Written discharge instruction in native language 

    


  

  


    


  

  


    
[23] USA 

    
Cross-sectional analysis of a multisite RCT 

    
3 Urban pediatric clinics 

    
1,126 Hispanic parents of children aged =8 years    with LPE and health literacy data 

    
  

    
  

    
Medication errors 

    
  

    


  

  


    


  

  


    
[25] USA 

    
Quantitative – Retrospective cohort    study 

    
A children’s tertiary hospital 

    
67,473 encounters of 49,002 patients 

    
LEP 

    
  

    
UHR 

    
  

    


  

  


    
Characteristics 

    


  

  


    
[33] USA 

    
Quantitative-An observational study 

    
A tertiary care pediatric ED 

    
105 English- & 105 Spanish- Speaking 

    
  

    
  

    
Others 

    
Implementation of EMR 

    


  

  


    


  

  


    
[40] Canada 

    
Quantitative – A secondary analysis    Chart review 

    
A tertiary care pediatric ED 

    
202 English- & Spanish-Speaking parents of children 2–24 months with fever, respiratory illness 

    
LEP 

    
  

    
ED visit 

    
  

    


  

  


    


  

  


    
[46] USA 

    
Retrospective chart review 

    
A large, urban academic children's hospital 

    
200 charts 

    
  

    
Written 

    
  

    
  

    


  

  


    
Component 

    


  

  


    
[47] USA 

    
QIP 

    
A large, urban academic children's hospital 

    
A 42-bed unit 

    
  

    
  

    
  

    
Discharge instruction template & visible    reminders for writing readable discharge instruction 

    


  

  


    


  

  


    
[53] USA 

    
Quantitative – A cross-sectional study 

    
An urban tertiary care PICU 

    
109 English- & 52 LEP with Spanish-Speaking    parents responded the survey 

    
  

    
Written 

    
Engagement Comprehension 

    
  

    


  

  


    


  

  


    
[39] Canada 

    
Qualitative – modified grounded theory In-depth    interviews 

    
Two tertiary care centres (Adult & Pediatric) 

    
Levels of health literacy screened and balanced    in the purposive sampling 31 parents & 20 patients 

    
  

    
Written 

    
  

    
  

    


  

  


    


  

  


    
[38] Canada 

    
Qualitative In-depth interviews on ED 

    
Two tertiary care centres (Adult & Pediatric) 

    
Levels of health literacy screened and balanced    in the purposive sampling 31 parents & 20 patients 

    
  

    
  

    
  

    
Teach-back technique 

    


  

  


    


  

  


    
[43] USA 

    
An exploratory descriptive design 

    
NICU 

    
26 New mothers of babies in the NICU 

    
Heath Literacy 

    


    
  

    
  

    


  

  


    


  

  


    
[30] USA 

    
Quantitative – Survey 

    
A pediatric ED 

    
503 caregivers 

    
  

    
  

    
ED visit 

    
Written and video education 

    


  

  


    


  

  


    
[15] USA 

    
Quantitative – Retrospective cohort    study 

    
ED of a pediatric tertiary hospital 

    
119,782 patients over 32 months 

    
LEP 

    
  

    
ED visit 

    
  

    


  

  


    


  

  


    
[41] Canada 

    
Quantitative – Prospective    observational study 

    
A tertiary care pediatric ED 

    
145 (69%) dyads of English- & Spanish-Speaking parents of children

    
  

    
  

    
Medication errors 

    
  

    


  

  


    


  

Table 1: Characteristics and main findings of included 35 studies.

Prevalence and Characteristics of Pediatric Patients with LEP or Health Literacy Deficit

Fourteen of the 35 included studies reported 6.9% [18] to 60.2% [19] caregivers with limited language proficiency. Caregivers with LEP were associated with older age (30.6±6) [19], lower income [20], lower educational background [19], public insurance [19-21], and lower level of health literacy [22]. A total of 8% [23] to 55% [24] of caregivers were reported with health literacy deficits by four included studies. Of those, 21.6% of caregivers had insufficient medication literacy [16].

Only one included study examined the processes and policies that children’s hospitals and associated language services in America utilise to facilitate communication with patients and/or their caregivers with LEP [25]. The majority of the services had a written translation policy (81%) and translated hospital-to-home transition of care information (74%). Healthcare services did however have differing policies associated with interpreters assisting with the translation of information verbally. Healthcare services generally used pre-translated documents (87%) or staff interpreters (81%). Other options used to improve communication included document libraries, pre-translated electronic health record templates, staff-edited machine translations, and sight translation, which refers to in-the-moment verbal translating of a written document in the target language [25].

Delivery of Hospital-to-home Transition Information for Patients and Caregivers with Limited English Language Proficiency or Low Health Literacy

Eleven of the 35 included studies described (1) the Format and language of the written and verbal hospital-to-home transition information, and (2) the components of transition information. Samuels-Kalow, Rhodes, et al. (2016) [26] identified the main barriers to effective transition information communication as the use of medical terminology/jargon by healthcare providers, and the health literacy deficit of caregivers. More than half of the received transition information (55%) was not accessible for caregivers with LEP and/or health literacy deficits due to unmet health literacy needs and/or language needs [23]. Only 22% to 27% of caregivers with LEP received discharge instruction in their preferred language [23,27]). The median readability of written information was reported as 10th-grade reading level [23,28], which is considered as suboptimal understandability for caregivers with LEP and/or literacy deficit.

In terms of verbal communication of hospital-to-home transition information, only over half of caregivers with LEP (53%) had a record of interpreter use [29], while almost one-third of communications (31%) did not use professional interpretation [30]. On the other hand, up to 53% of physicians and 41% of nurses often used an interpreter [31]. A sum of 13% of discharge encounters included an open-ended question to assess caregiver comprehension of transition information [30].

Hospital-to-home transition care information generally include principal diagnosis, expected symptoms, when/where/who to seek help if concerns, discharge medication/equipment, and follow up arrangement [23,27,32]. Compared to caregivers with English-proficiency, nurses were 11.5 times less likely to discuss all components of transition care information with caregivers with LEP (95 CI% 4.4 to 30.1) [27]. There were 31% to 70% of caregivers with LEP who received all components of safe transition information from nurses at their child’s discharge [27,30]. The association between the number of key element omission of transition information and English- was up to 340-fold higher than Spanish-speaking families (95% CI 112.4 to 1027.5) [27, 33]. In particular, transition information was provided to 65% of LEP on medication dosing [27,30], 37%-55% of LEP on when/where go to seek help [23,30], and 28% of LEP on what to try at home before seeking care [23]. Commonly omitted component of transition information were signs of worsening (21%–56%) [23,27], who to contact if worsening (25%–38%) [23,28], where to seek help (14%) [23], or medication reconciliation (3%) [23].

Of all the transition information components, three studies focused on communicating discharge medication information. Overall, nurses verbally reviewed medications in some capacity with 69% of LEP caregivers, however, the information was inconsistent and at times was incomplete [34,35]. The commonly communicated information included the medication name, frequency, size effects, and timing [16,34,35]. Medication dosage, duration, and route of medications were communicated less often [35]. When assessed, medication dosage was understood by 92% of LEP caregivers; however, only 30% were able to correctly convert measurements [16].

Impact of Caregivers with Limited English Language Proficiency or Health Literacy Deficit on the Transition Process and Patients’ Recovery Experience

Eighteen included studies examined the impact of language proficiency or health literacy on patients’ experiences of the hospital-to-home transition of care and recovery experience. A range of issues was associated with caregivers’ limited comprehension of information including caregiver-healthcare provider engagement, unplanned ED visits and/or unplanned hospital readmission post-discharge, medication safety, and others. Compared to families with English as their first language, caregivers with LEP and lower levels of health literacy were observed with less engagement with healthcare providers in the rounds or during medical team examinations of children [31]. The caregivers with LEP were also less likely to speak up about their observations or question healthcare providers’ decisions/actions [31,36,37]. Caregivers with LEP were perceived as socially isolate and not prepared to navigate the health system, for example, not asking for an interpreter despite having language barriers in communicating with healthcare providers about critical hospital-to-home transition care information [31,37].

Three of the studies identified five main factors impacting engagement between caregivers with LEP and healthcare providers. Factors included the use of medical jargon by healthcare providers when communicating with caregivers [38], limited use of translation services by both healthcare providers and caregivers [25,30], difficulties in translating the uncommon languages for immigrants [25], aligning professional interpreter service and the discharge event [25,38] and the final factor related to a lack of protected time for healthcare providers to communicate transition information due to heavy workload [38].

Six studies identified that children of LEP or health literacy deficit families were at higher risks of experiencing unplanned 72-hour ED visits following discharge from ED or inpatient ward (OR=1.15 to 7.9) [17,21,32,39-41]. As a result, there were up to 9.7% of children experienced an unplanned 30-day hospital readmission [20,32]. Unplanned hospitalization was significantly associated with LEP families, especially those with low socioeconomic status or children with complex medical conditions [20].

Children of caregivers with LEP and a lower level of health literacy were also associated with 3.7 times more likelihood of having medication errors. The most common error was related to dosing [24,42]. Three studies assessed the discharge readiness of caregivers with LEP. Caregivers’ comprehension scores were found to correspond with the nurses’ rating of patient readiness for discharge, but not with the caregivers’ perceptions of their own readiness for discharge [43]. The other two studies found that families with LEP were less likely to be prepared with technical care skills (aOR = 0.32, 95% CI 0.13-0.81) [18] and scored poorly in the Fragile Infant parental Readiness Evaluation [19].

Other negative impacts of LEP family on the child’s outcome included longer wait times to discharge following the decision time [44], 12 times more chance of missed follow-up [21], and 26% longer LOS [29]. However, it is worth noting that the child of an LEP family was associated with 32% more chances of receiving breast milk and 17% less likelihood of being discharged home with oxygen [45].

Effectiveness of Interventions to Improve Transition Information Delivery

In responding to the impact LEP and/or health literacy deficit has on caregivers’ experiences and patients’ recovery following hospital discharge, studies have explored families’ needs. Caregivers with LEP expressed their desire for structured transition of care information using simplified language. They indicated they required not only verbal communication but also a physical hands-on demonstration of specific care [26].

Eleven studies examined the interventions implemented to assist caregivers with LEP or health literacy deficit. Interventions intended to improve written hospital-to-home transition information included the use of template and discharge service [23,46], translated information of preferred language [47,48], nurse-developed pictographs and transition information [22,39,49], and electronic medical record [44]. The results demonstrated improved guideline adherence [23,46], increased written discharge instructions in caregivers’ preferred language [47,48], and enhanced caregivers’ satisfaction with the content and engagement when seeking medical advice post-discharge [22,39,44,49].

In terms of verbal communication of transitioning care, three studies assessed the effectiveness of question prompt lists [37], professional interpreter services [30], and teach-back techniques to deliver transition of care information [26]. A total of 40.7% of healthcare providers and 52.6% of parents found the question prompt lists guided transition information delivery improved caregiver-nurse communication and transition process and valued the list to be introduced early in the NICU admission [37]. The use of professional interpreter services for families with LEP demonstrated significantly higher quality of transition of care information content and delivery (odds ratio (OR) = 7.1; 95% confidence interval (CI) [1.4–37.0]) and improved caregiver’s level of comprehension (OR = 6.1; 95% CI [2.3–15.9]) [30].

A study implemented and evaluated the teach-back technique in preparing families with LEP for the delivery of hospital-to-home transition information [26]. The teach-back technique is a communication method used by healthcare providers to engage and confirm patients’ and/or caregivers understanding of the information provided to them. In general, caregivers felt the technique could assist in confirming and clarifying information reducing the likelihood that key hospital-to-home transition care information is not forgotten or misunderstood. Some participants, however, felt they were being treated differently, whilst those participants with sufficient health literacy felt the technique was unnecessary. Therefore, when applying the technique, it is suggested that healthcare providers present a clear explanation of the intention of the teach-back technique to encourage parents not to take offense [26].

Discussion

This is, to date, the first comprehensive review of research evidence on communication of hospital-to-home transitioning care information for pediatric patients of caregivers with LEP or HLD. This review identified a higher prevalence of pediatric patients of families with insufficient English and health literacy in comparison to the AHRQ and ABS reports [4,7]. This might be due to pediatric patients within families with LEP residing across different regions and demographic groups [50]. It is well recognised that immigrant and refugee families from culturally diverse backgrounds often have insufficient comprehension of health information due to language barriers or lower levels of health literacy when seeking health care for their children [21,23,27,32]. Additionally, these families are associated with lower social-economic status, which can lead to an inability to access health care services [20,21,50]. Therefore, understanding of regions with a high prevalence of population with language proficiency and health literacy issues could facilitate stakeholders to embed policies and strategies to ensure equitable healthcare access and effective communication [25,50].

In collaboration with previous research which has directly observed the delivery of transition to home information [32,35], this review found that caregivers with LEP were generally provided with inconsistent and incomplete verbal communication of transitioning care information. Transition information that was provided to the majority of LEP caregivers was found to be not in their preferred language, and only up to half of healthcare providers were found to use professional interpreters [30]. This further highlights the challenges caregivers with LEP experience in understanding transition information [9], increasing the stress of transition of care from hospital to home [1], and placing children of caregivers with LEP at greater risk to safety during the transitional period [4]. The overwhelming notion from this review was the negative impact on patient’s health outcomes and recovery experience following hospital discharge, which is associated with caregivers’ limited comprehension of transition information due to their language proficiency and level of health literacy. Patients were found to be at higher risk of minimum engagement with healthcare providers, medication errors, unplanned ED visits related to the initial index admission and unplanned readmissions of patients. Caregivers with language barriers experienced challenges associated with parental role shift, care for patients requiring ongoing use of medical equipment, and adherence to provider advice [51]. A qualitative study interviewing 31 caregivers of 20 children, who presented to an ED in America, also identified receiving conflicting information due to limited health literacy or being judged when they presented to ED [38].

This integrative review suggests that for caregivers with LEP or health literature deficit, translation of written transition information to the caregiver’s preferred language and usage of professional interpreter services were effective in improving the transition process and child health outcomes [6,52]. This aligns with broader recommendations for improving healthcare safety for ethnic minorities. A systematic review by Chauhan et al. (2020) [53] found that identifying LEP is essential for providing interpreting services, however caregivers preferred language is not always recorded at admission, or may be recorded incorrectly. Furthermore, the use of carers, family members, and other non-professional interpreters can decrease the patient safety risk when a professional interpreter is not available, however can compromise patient confidentiality and potentially double the errors of clinical consequence compared to using professional interpreters. In the paediatric care setting, caregivers are already acting as the translators of care to their children, therefore their comprehension of the information is essential to enable them to continue to provide safe and effective care with confidence.

One of the 35 included studies in this integrative review demonstrated that the teach-back technique is critical to ensure that caregivers comprehend and apply transition information [26]. The use of teach-back is well supported in the wider health care literature to improve communication and therefore health outcomes, especially in those with LEP [54]. A systematic review by Shersher et al. (2021) defined teach-back as requesting the patient to demonstrate their comprehension, to assess their understanding and enable supplementary information to be provided. Although limited by health care provider time constraints and beliefs, found evidence that teach-back enhances patient knowledge and health outcomes, patients were mostly appreciative, and the technique was improved by training of the health care provider [54].

Practice Implications

Assessment of all pediatric patients and their caregivers’ language spoken at home and level of health literacy should be added to the routine ED presentation and hospital admission process. Translation of written hospital-to-home transition care information, depending on the country, into the most common languages spoken is required.

For uncommon spoken languages, the arrangement of a translation service needs to be commenced as early as a child’s initial presentation of ED or hospital admission. In terms of verbal communication, interpreter services should be arranged for families with LEP. Timing of transition information delivery should be aligned with the main caregiver’s availability and readiness to learn, and does not need to wait till the last minute of the ED visit or hospital stay. It would be appropriate to commence communication of information once the child is medically stable [32].

The contents of transition information need be prepared at an appropriate level of literacy to accommodate caregivers’ language and health literacy needs. All nurses should receive education on the teach-back technique to confirm caregivers' comprehension and ensure caregivers provide continuity of care for children at home post-hospital discharge [26,54]. Health care services should enable nurses to be supported with the time and resources to implement teach-back effectively [54].

Limitation

This integrative review only included studies that examined English proficiency in countries with English is their official language, therefore, caution should be taken into consideration when applying the results of this review to healthcare services of countries where official language is not English.

Conclusion

A total of 35 included studies were synthesised in this integrative review. The finding affirmed the unique challenges when communicating hospital-to-home transition information with caregivers with LEP and health literacy deficits. Inconsistent and incomplete transitioning care information with inappropriate levels of health literacy led to overwhelmingly negative patients’ adverse health outcomes. To ensure caregivers access transition care information, it is recommended to provide translated written information and interpreter services. Transition information should also be prepared with an appropriate level of health literacy and teach-back technique to be used to confirm caregivers’ comprehension.

Author Statements

Declaration of Interests

The authors declare that they have no known competing fi nancial interests or personal relationships that could have appeared to infl uence the work reported in this paper.

Acknowledgments

We would like to acknowledge Ms Marta Rossignoli, Previous Librarian of Child and Adolescent Health Service, WA, for her assistance in the literature search.

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