Emergency department care transition barriers: A qualitative study of care partners of older adults with cognitive impairment

Abstract INTRODUCTION After emergency department (ED) discharge, persons living with cognitive impairment (PLWCI) and their care partners are particularly at risk for adverse outcomes. We sought to identify the barriers experienced by care partners of PLWCI during ED discharge care transitions. METHODS We conducted a qualitative study of 25 care partners of PLWCI discharged from four EDs. We used the validated 4AT and care partner‐completed AD8 screening tools, respectively, to exclude care partners of older adults with concern for delirium and include care partners of older adults with cognitive impairment. We conducted recorded, semi‐structured interviews using a standardized guide, and two team members coded and analyzed all professional transcriptions to identify emerging themes and representative quotations. RESULTS Care partners’ mean age was 56.7 years, 80% were female, and 24% identified as African American. We identified four major barriers regarding ED discharge care transitions among care partners of PLWCI: (1) unique care considerations while in the ED setting impact the perceived success of the care transition, (2) poor communication and lack of care partner engagement was a commonplace during the ED discharge process, (3) care partners experienced challenges and additional responsibilities when aiding during acute illness and recovery phases, and (4) navigating the health care system after an ED encounter was perceived as difficult by care partners. DISCUSSION Our findings demonstrate critical barriers faced during ED discharge care transitions among care partners of PLWCI. Findings from this work may inform the development of novel care partner‐reported outcome measures as well as ED discharge care transition interventions targeting care partners.


INTRODUCTION
Persons living with dementia (PLWD) and older adults with mild cognitive impairment (MCI) seek care in the emergency department (ED) at higher rates than their cognitively intact counterparts and account for nearly 2 million visits annually. [1][2][3][4] Together, the majority of these persons living with cognitive impairment (PLWCI) are discharged from the ED, 3 and their care partners subsequently provide a significant amount of hands-on care and navigation of health-related and social needs within this vulnerable time period. After an ED visit, PLWCI are at increased risk of adverse events, including functional decline, hospitalization, and mortality. 2,3,[5][6][7][8][9] The experiences of care partners have been more greatly described during the post-hospitalization care transition, 10 what matters most to stakeholders during ED care transitions. 6,9 As a first step toward developing a novel care partner-reported outcome measure, we sought to assess the barriers experienced by care partners of PLWCI during ED discharge care transitions. A greater understanding of the ED discharge care transition, as experienced by care partners of PLWCI, will provide new insights into ways in which the ED discharge process can be improved. Additionally, this work will inform the subsequent development of tailored interventions or educational tools to support this population during ED discharge care transitions.

Study design
This study protocol was approved by the Yale University institutional review board. Methods and results are reported in accordance with the COnsolidated criteria for REporting Qualitative research (COREQ). 20

Setting and participants
In this work, we chose to focus on care partners of PLWCI, as the unique experiences of those with intact cognition would likely identify separate barriers and themes during the ED discharge care transition. 21 Described in greater detail below, PLWCI were identified through the electronic medical record as well as through in-ED cognitive testing to additionally capture those with MCI. Historically, the presence of field-testing, in which the interview guide was tested with potential study participants from the same population as that which were ultimately enrolled. Minor revisions were made to ensure intelligibility, modify starting words, and add possible follow-up questions if relevant. All interviews were audio-recorded, professionally transcribed, and redacted. Field notes were taken immediately after each interview.

Data analysis
We used an iterative process of thematic analysis to synthesize the data, identify patterns, and develop themes across the interviews. 37 Specifically, we used a combined deductive and inductive approach, 38 where concepts in the standardized interview guide were used to structure the initial codebook and data from interviews were incor-porated (Supplemental Text S1). The coding team was composed of C.J.G. and P.T.S., two emergency physicians with expertise in ED care transitions. C.J.G. has completed formal training in qualitative research.
Initially, the two investigators independently coded five transcripts and met to review coding and refine the coding structure. Both researchers coded 100% of the data. Coders obtained consensus on major topics and subtopics from the remainder of the research team and applied the final coding structure to all transcripts. C.J.G. and P.T.S. iteratively reviewed coded data, compiled separate memos, and identified themes using NVivo software (version 12; QSR International, Victoria, Australia). Recruitment, interviewing, and coding occurred concurrently until data saturation was reached. Coders shared findings and obtained team consensus of representative quotes and contextualized findings.

RESULTS
We

ED discharge process
Many care partners reported that the ED discharge process was substantially lacking in communication from staff and they did not feel they were adequately engaged during this key portion of the care transition. One care partner who was able to be present in the ED reported that the ED clinician had competing interests that prevented a more substantive one-on-one conversation at discharge, noting:

Care partner challenges and responsibilities
After an ED visit for a PLWCI, care partners experienced several challenges throughout the remainder of the acute illness and recovery

TA B L E 3 Summary of Themes 3 and 4 and representative quotations
Theme/subtheme Representative quotation

Care partners experienced challenges and additional responsibilities when aiding during acute illness and recovery phases
Feelings of guilt When I called them to let them know that she fell, broke her nose, and I'm blaming myself, and they're, "Stop. Changing facility level of care I have no confidence that she wasn't going to fall again, none, none at all. To me, it was my next action was to find a 24-h process to get her into and it was just a live-in place to get her out of there. When she's home, she helps me out a lot. (CP 192) Finally, care partners also highlighted significant ongoing responsibilities (e.g., bill payment, house chores) related to the family member or friend that were exacerbated during the acute illness prompting ED visitation. These responsibilities were present even for care partners of a PLWCI residing in extended care facilities and were even more pronounced for care partners not living in the immediate vicinity of PLWCI.

Navigating the health care system
During the care transition period after an ED visit, care partners of PLWCI experienced difficulty in following up with primary care clinicians, obtaining desired information from community organizations regarding assistance, and changing the level of care at extended care facilities to increase monitoring during the recovery phase. One care partner who recognized a need for increased monitoring after the ED visit noted significant uncertainty, stating: I find discharging to be a laughable process. It's like, "All right. Well, you need 24 hour care." Like, "Well, where does materialize from?" (CP

185)
Care partners also expressed a lack of knowledge as to where to obtain formal neurocognitive testing, particularly for those with MCI.
One care partner reported the impact that the recognized but undi- Findings from this work will next be used to generate candidate items for inclusion within a novel care partner-outcome measure, specifically designed to incorporate care partner stakeholder priorities during ED care transitions. An ED-specific care partner-reported outcome measure has the potential to overcome limitations of currently available quality measures or tools due to their current absence of ED setting-specific considerations, inconsistent psychometric data, and deficiency-focused approaches to the care partner role. 45 Furthermore, a newly developed care partner-outcome measure will have the ability to quantitatively assess the 'success' of an ED discharge care

LIMITATIONS
Our study findings should be considered in the context of several limitations. This research occurred in four EDs within one health system in New England, and findings may therefore not be generalizable to other regions. The study was conducted during the COVID-19 pandemic. It is possible that unique pandemic stressors and resource limitations led to suboptimal processes of care than would have occurred otherwise. To enhance generalizability, we purposively enrolled participants to ensure a diverse sample by age, race, and chief complaint category.
However, we were unable to enroll any participants that identified Spanish as their preferred language despite intentional efforts to translate study consent forms and materials and the presence of bilingual and bicultural study team members. We recognize that inclusion of a greater proportion of non-English-speaking participants may reveal additional barriers and themes surrounding ED care transitions.

CONCLUSION
Our findings demonstrate critical barriers faced during ED discharge care transitions among care partners of PLWCI. Findings from this work may inform the development of novel care partner-reported outcome measures as well as ED discharge care transition interventions targeting care partners.