Below the Surface: Caregivers’ Experience of Hospital-to-Home Transitions

Child–caregiver dyads admitted on a general pediatrics inpatient hospitalist service during a 6-month period in 2017 were included as part of an ongoing study examining social risk association with adverse postdischarge outcomes.^5,6  This brief report details the results of a hospital-to-home transition survey to capture family experiences during and after hospitalization. Enrolled caregivers were contacted 7 days after discharge to complete the survey by phone, mail, or electronically. Participants received a $10 gift card for survey completion. Five attempts were made by the study team to contact participants before being considered lost to follow-up.

Electronic health record reviews were completed for child participants to capture demographics and medical complexity. All study procedures were approved by the institutional review board. A thorough description of recruitment methods is available in Vaz et al, 2020.⁵ 

The 26-item hospital-to-home transition survey was adapted from existing discharge and care transition measures, beginning with a question about the caregiver’s current perception of their child’s health. Remaining items captured 5 domains: the child’s hospitalization, communication during the hospitalization, postdischarge medications, postdischarge follow-up, and hospitalization impact on family. Likert-scale items pertaining to the caregiver’s perception of the hospitalization were adapted from the pediatric version of the Care Transitions Measure.⁷  Questions pertaining to communication during the hospitalization, medications after discharge, and postdischarge follow-up were adapted from previous studies.^8,9  The impact of the hospitalization on family was assessed using items from the National Survey of Child Health, CAHPS Child Hospital Survey, and Pediatric Integrated Care Survey.^10–12 

Additionally, our team of researchers developed 4 open-ended questions based on the transitions of care literature.^1,4  This allowed caregivers to expand on the hospitalization experience, including:

1. What were your family’s biggest challenges after you left the hospital?

2. What fell through the cracks or did not get addressed that was supposed to?

3. Were there significant changes to your family that occurred after the hospitalization, and, if so, what were they? and

4. What else would you like to tell us about your hospitalization to make the care we give to other families better? This survey is available by request.

Descriptive statistics summarized responses to each of the questions within the described 5 domains. Closed-ended questions were recoded from Likert to binary as the highest (or lowest) response versus all others, and counts and percentages were calculated. Two research assistants trained in qualitative methods independently coded and categorized responses, with discrepancies arbitrated with the study team. We used an iterative conventional content analysis framework, appropriate for describing phenomena in the absence of sufficient research evidence or theory,¹³  to refine our coding. Open-ended results were entered into Dedoose¹⁴  and exported to Excel. Although caregivers gave feedback for each open-ended question separately, responses were ultimately coded into categories independent of these because of significant thematic overlap. Responses were coded into pre- or postdischarge time periods and analyzed thematically, with the most prevalent categories and subcategories agreed upon by the team based on highest endorsement and relevance.

Of the 249 caregivers enrolled in the original study, 74% (n = 184) completed the hospital-to-home transition survey within a median of 21 days (range 7–157). Demographic characteristics of patients and caregivers completing the survey are shown in Table 1. A diagram regarding enrollment of study participants is available in Supplemental Fig 1.

Most respondents (88%) provided some form of written response to the open-ended questions; 14% reported having no concerns or advice. The majority (74%) answered 1 or more open-ended question with concerns or advice regarding their experience. Only 57% (n = 20) of caregivers who are Black, indigenous, and people of color (BIPOC) completed open-ended feedback compared with 79% (n = 117) non-BIPOC (P = .009).

Among the quantitative survey items (Table 2), caregivers reported a positive recollection of the hospital stay and discharge process and were generally satisfied with the hospital experience (90.8%).

Caregiver open-ended responses regarding the predischarge period captured concerns related to (1) finances and resources (eg, cost of food during the stay), (2) communication (eg, issues with medical providers and staff), (3) hospital environment concerns, and (4) the discharge process (Table 2). Many responses fell under multiple subcategories, such as reporting lack of communication about eligibility for free meals, as well as other inpatient resources. For example, 1 caregiver wrote, “I would like to have been notified of any helpful benefits like meals and transportation reimbursement when he was first admitted.”

Concerns with the discharge process frequently related to staff communication. For example, 1 caregiver emphasized issues with their discharge instructions: “It took a LOT of effort and persistence to get the different teams of doctors to collaborate on and create his care plan.”

Closed-ended responses demonstrated that caregivers generally felt comfortable contacting their primary care provider if their child’s health worsened (90.2%) and most (87.5%) reported understanding how to manage their child’s health after discharge. Some caregivers (33.2%) reported difficulty making ends meet financially after returning home (Table 3).

Open-ended responses from caregivers during the postdischarge time related to emergent categories and subcategories: (1) family well-being; (2) financial; and (3) medical follow-up (Table 3). Family well-being captured concerns with (1) the child’s health at home, (2) another family member’s health, (3), caregiver and family stress and coping, and (4) child care needs. For instance, one caregiver emphasized difficulties with the transition, writing they were “on edge, sleepless at night worrying if he will have another seizure at night…bringing the rescue med everywhere… worrying over his future.”

Caregivers endorsed financial concerns, primarily focused around the burden of medical bills. For example, a caregiver stated, “I am terrified of receiving a bill. I have state insurance through Washington and I hope and pray it is accepted.” Caregivers also noted the economic impact of missed work, as 1 caregiver described their concern “just having to be off work to care [for] daughter without pay.”

Caregivers also provided feedback related to medical follow-up. Subcategories include supply issues, appointment issues, and lack of training or instruction. One caregiver described facing a new medical routine without anticipatory guidance: “No one told me how to handle insulin or what to do when we got home in case he could not eat or drink. We had an emergency and lots of stress because of it.”

This study highlights opportunities to expand on closed-ended feedback of the care experience, above and beyond satisfaction with a hospitalization. Our survey included questions centered on stressors, both from quantitative and qualitative perspectives, which reinforced and highlighted the breadth of problems families face. Although discrete survey questions provide a quantitative sense of hospitalization satisfaction, the incorporation of open-ended questions provided needed context for tailored follow-up with patients and identification of concrete priorities for future caregiver-informed quality improvement efforts. In the recovery period at home, caregivers continue to experience financial, mental, and physical health issues, as well as issues related to medical care follow-up. Inquiring about and addressing these issues before discharge through future quality improvement efforts may make for more robust and successful transitions from hospital to home.^1,3 

Our study had several limitations. It was conducted within a single hospital at an academic medical center and may not be generalizable across pediatric inpatient settings. Recall bias was a concern because, to ensure we included as many participants as possible, we gave ample time for caregivers to complete the postdischarge survey (range 7–157 days after discharge). Triangulation of the open responses would have augmented validation of the individual caregiver responses. To address this limitation, we have used this study’s pilot data as a framework for a more in-depth qualitative study specifically on challenges faced in the inpatient setting and are currently analyzing these data. Finally, although our sample is representative of the demographics in our state, we may be missing key information from underresourced groups. In this current study, caregivers who identified as BIPOC were less likely to respond to open-ended prompts, similar to related research.^15–17  Perceived or actual bias and discrimination from medical providers may discourage open dialogue with the medical or research team. Future research must include acknowledgment of unique experiences and barriers families face while hospitalized and in recovery, both to ensure the voices of BIPOC families in research methods and recruitment are represented and to inform care experiences during this challenging time.

In summary, our study found a mixed-method approach of discrete and open-ended survey items that included questions related to financial stress, family well-being, and communication augmented and contextualized the feedback generated about the patient care experience. Utilization of similar approaches may be useful to provide baseline data and identify unique and distinct opportunities for quality improvement interventions specific to hospital systems.