Caregiver Inclusivity and Empowerment During Family-Centered Rounds Free

We performed a cross-sectional survey study at a pediatric tertiary care center from May 2019 to December 2019. We used the electronic medical record to screen for eligibility. Caregivers of hospitalized children admitted to the general pediatrics teams were eligible if they had not participated previously in this study, were >18 years old, and spoke English or Spanish. We excluded caregivers of children undergoing evaluation for child abuse and those with primary psychiatric disorders. Members of our study team approached eligible caregivers in their hospital room and asked them to complete a survey about their experience with family-centered rounds. Caregivers could complete the survey electronically or by paper. We performed surveys once per week on 22 dates during the study period.

We developed a caregiver survey based on a literature review of studies about family experience with family-centered rounds because no validated tool existed to assess caregiver perception of inclusivity and empowerment to participate during rounds. We used a 5-point Likert scale to measure agreement with statements about family-centered rounds. One statement, “I am afraid to ask questions when something does not seem right” came from the Children’s Hospital Safety Climate Questionaire.¹⁸  We met with an expert in survey methodology to review our questions, performed an expert interview with a pediatric hospitalist, and conducted cognitive interviews with 5 caregivers to finalize the survey. Our final survey consisted of 30 questions, 11 of which assessed satisfaction with family-centered rounds, processes (ie, orientation to and preparation for family-centered rounds), understanding (ie, knowledge of team member roles, ease in following the format and gaining information about child’s medical condition), and empowerment/inclusivity; 9 of which inquired about quality improvement purposes (ie, “I was asked if another format for rounds would be more comfortable for me or my child”); and 10 of which asked about caregiver sociodemographics. Race and ethnicity were self-identified by caregivers. The survey was translated into Spanish by our institutional interpreter service.

For the purposes of our analyses, we categorized caregivers’ race and ethnicity into two groups, non-Latinx White and Black, Latinx, and other caregivers of color. We examined unadjusted differences between these two groups in agreement with family-centered rounds statements through Wilcoxon rank sum test (5 = strongly agree, 1 = strongly disagree). Similar methods were used to compare agreement with statements by education (high school or less versus greater than high school) and annual household income (<$20 000 vs ≥$20 000). Additionally, we fit linear regression models to each of the family-centered rounds statements, with race as the primary coefficient of interest, adjusted for caregiver age, sex, and education. Statistical analyses were performed using SAS software (SAS Institute Inc, Cary, NC).

During the 22 dates of recruitment, we identified 147 eligible caregivers. Of these caregivers, 42 (29%) could not be present for family-centered rounds. Of the remaining 105 eligible caregivers, 5 (5%) declined participation and 100 (95%) participated. One caregiver did not answer the question on race and was excluded from our analyses, resulting in a final sample size of 99. The majority of caregivers were parents (90%) and female (81%). Forty-seven self-identified as non-Latinx White (Table 1). Slightly less than half (41, 41%) reported high school or less as their highest level of education, and 12 (12%) reported a household income <$20 000.

Overall, the majority of caregivers (91%) were either satisfied or extremely satisfied with family-centered rounds (100% non-Latinx White vs 85% Black, Latinx, and other caregivers of color, P = .13). Although we found no racial/ethnic differences in statements of satisfaction or understanding of the content or processes of family-centered rounds (Supplemental information), we found several differences in caregiver statements of inclusion and empowerment by race/ethnicity (Table 2). In unadjusted analyses, non-Latinx White caregivers more strongly agreed with the statements, “I felt comfortable participating in rounds” (P = .045), “I had adequate time to ask questions during rounds” (P = .017), and “I felt a valued member of the team during rounds” (P = .003) than Black, Latinx, and other caregivers of color. Raw data with the percentage of caregivers who responded the most favorably to the statements of inclusivity and empowerment are also shown in the Supplemental information. In linear regression models, White caregivers continued to have significantly higher agreement with statements of empowerment and inclusion, even after adjusting for caregiver age, sex, and education compared with Black, Latinx, and other caregivers of color (Table 3). Additionally, in adjusted analyses, non-Latinx White caregivers more strongly disagreed with the statement, “I am afraid to ask questions when something does not seem right.” Analyses on statements of inclusion/empowerment by income and education were limited because of a high number of caregivers who declined to answer these questions but are shown in the Supplemental information.

In our study, we found racial/ethnic differences in caregiver-reported experience of family-centered rounds. Although the majority of caregivers were satisfied with family-centered rounds, non-Latinx White caregivers reported greater comfort in participating in rounds, having time to ask questions, and feeling like a valued member of the team than Black, Latinx, and other caregivers of color. This finding remained significant after controlling for age, sex, and education. Greater empowerment of caregivers can have important implications for clinical care and health outcomes, as caregiver participation in rounds can help the medical team to identify potential medical errors, optimize pain or symptom control, and assess readiness for discharge.^19,20 

Inequities in caregiver inclusion and empowerment to participate in family-centered rounds can likely be attributed to many factors, including those related to the medical team (implicit bias, misinterpretation of cultural norms, worse and less empathic communication), the family (health literacy, advocacy skills, English proficiency, competing unmet needs), and the system (limited and set time for rounds, availability of interpreters, lack of family orientation to family-centered rounds, learners with various competency levels in communication). Ideally physicians seek to consistently incorporate caregiver values into the care plan. In reality, caregivers rarely fully participate, and our study suggests that this may be especially true for families of color.^15,17  In nationally representative studies, patients of color report shorter and less empathic communication compared with their White counterparts and are less likely to receive family-centered care.^21–23  The majority of previous studies in the inpatient pediatric setting have focused on barriers to quality communication among Latinx families requiring an interpreter.^16,24  Through our study, we contribute to the literature on racial and ethnic differences in the inpatient setting in a diverse and predominantly English-speaking population.

The structure of rounds themselves has advantages for families with the financial and social resources to be present, participate, and engage in rounds.^25,26  One study revealed that families with greater financial hardships spend up to six times more of their daily income on nonmedical costs during their child’s hospitalization.²⁷  Because of structural racism, which has led to inequities in employment/educational opportunities and wealth, families of color may have disproportionately fewer resources to cushion the impact of a child’s hospitalization. However, we should note that we found differences by race even when accounting for socioeconomic status.

This study has several limitations, including a small sample size at a single institution. Because of our small sample size, we were unable to evaluate the experience of caregivers of individual racial and ethnic groups compared with White caregivers. We suspect that the experiences and barriers to inclusivity may be unique to different racial/ethnic groups and that intersectionality with class, sex, English proficiency, and other identity groups (sexuality, ability, etc) may all influence caregiver empowerment. A larger study with a greater sample size would allow for more nuanced analyses of family-centered rounds inclusion and empowerment by different racial and ethnic groups. Additionally, we did not measure language proficiency, despite evidence that caregivers with limited English proficiency may experience language-specific barriers to effective communication during rounds. Future studies should include language proficiency as an important contributor to inequities in inclusivity and empowerment during rounds.^16,17  Furthermore, there was no existing validated measure of family-centered rounds inclusion or empowerment. future studies, researchers could use validated measures of communication quality available in English and Spanish to explore the differences we found in the current study.^28,29  Because we excluded families who were not present during rounds, it would be interesting to learn more about these families’ experiences and empowerment when talking to doctors outside of rounds. Finally, we did not adjust for additional covariates, such as attending physician or team factors, that may influence inclusion and empowerment (ie, concordance of patient-provider race/ethnicity). Next steps are to better understand inequities in the experience of family-centered rounds and to develop interventions that promote inclusive rounds.

In conclusion, through this study, we have built upon existing literature regarding family experiences of family-centered rounds and suggest the need to both study and identify strategies to conduct more inclusive rounds that empower all caregivers to participate.