Annually, millions of Americans are discharged from the hospital with the expectation that their treatment plan can be followed at home (Alper et al., 2020). Although medically able to recover at home, an estimated 15%-20% of patients are readmitted to the hospital within 1 month of being discharged (Zuckerman et al., 2016). Hospital readmissions are costly for the health care system, but as-or perhaps more-importantly, readmissions cause undue stress and burden on the patient due to delayed recovery, time away from work, and unnecessary distress (Luther et al., 2019).

Hospital discharge involves transitioning from a hospital setting to a home or community setting where patients are expected to be responsible for the majority of their care including managing new medications, transportation to follow-up appointments, surgical drains, diet restrictions, and other activities of daily living while coping with limited functional abilities. This can be a vulnerable time for patients trying to recover from serious medical illness or surgery. Several studies have shown that family/informal (vs. formal or paid) caregivers play a crucial role in helping patients manage their needs during this vulnerable transition period (Hahn-Goldberg et al., 2018). For example, at the time of discharge, caregivers can advocate for patients, including asking additional questions, voicing needs and concerns, and remembering discharge instructions. At home, caregivers often assume the role of providing direct medical care (e.g., dressing changes, medication administration), care-plan management (e.g., remembering instructions, coordinating follow-up appointments), and assorted tasks of daily living (e.g., cleaning and errand-running). After discharge, caregivers may also take on the role of sentry, watching for worsening symptoms and ensuring that the patient is recovering (Hahn-Goldberg et al., 2018). Through each of these roles, caregivers play a large part in facilitating patients' successful recovery at home and, when well prepared through proper discharge teaching, can improve patient outcomes and prevent hospital readmissions (Dossa et al., 2012).

Large-scale care transition studies have begun identifying a host of organizational factors impacting quality and outcomes of care transitions, including implementation of strategies for clear communication and fostering trust with both patients and caregivers (Naylor et al., 2017; Sorra et al., 2021). In concert with these efforts, the Agency for Healthcare Research and Quality (AHRQ) has directly addressed the role of caregivers and offers a structured discharge planning process intended to improve discharge planning and reduce adverse events postdischarge (Agency for Healthcare Research and Quality, 2013). The IDEAL (Include, Discuss, Educate, Assess, and Listen) strategy focuses on actively engaging the patient and the caregiver in the discharge process. The importance of caregiver engagement is highlighted throughout this framework, recognizing that patients' informal networks are key to successful recovery at home. For instance, the "Include" portion of IDEAL involves early identification of a family member or a friend who will provide competent and consistent care at home. In addition to the patient, IDEAL recognizes the caregiver as a full partner and active participant in the discharge planning process. Similarly, the "Discuss" portion encourages the care team to discuss with the patient and the caregiver five critical areas to prevent complications at home:

1. Describe what home life will be like.

2. Review medications the patient will be going home with.

3. Highlight warning signs and problems to watch out for.

4. Explain any test results.

5. Schedule follow-up appointments.

For the "Educate" portion, the care team is asked to focus on the need to educate both patients and caregivers using simple terms about the patient's condition and diagnosis, the discharge process, and next steps at every opportunity throughout the hospital stay. The "Assess" portion encourages the care team to use techniques such as teach-back to determine whether the patient and the caregiver understand the patient's condition, diagnosis, and next steps. Finally, care teams are encouraged to "Listen" to the patient and caregiver's goals, preferences, observations, and concerns, and honor them (Agency for Healthcare Research and Quality, 2013). See Table 1 for a summary of the IDEAL discharge steps.

TABLE 1 IDEAL Discharge Stepsa

In addition to the IDEAL discharge process, the American Association of Retired Persons (AARP) developed state legislation advocating for family caregivers called the CARE Act (AARP, 2014). The CARE Act, adopted now by 40 state legislatures, requires that hospitals record the name of the family caregiver, inform them of their family member's discharge, and also provide the family member all discharge education and instruction. Similar to the IDEAL discharge process, identification and inclusion of the patient's caregivers at home are vital to attending to the complex care responsibilities at home, improving patient and caregiver satisfaction, and avoiding unnecessary health care costs and readmissions.

Despite being widely available to hospital systems, there is scant information available about whether caregiver experiences of the hospital discharge process are aligned with the specific recommendations of the IDEAL discharge model and, if they are, whether the model effectively addresses caregiver postdischarge needs. As such, the purpose of this study, part of a larger parent study examining the quality of hospital discharge, was to use four case interviews of family caregivers for patients discharged from a tertiary academic health sciences center hospital to explore caregiver perceptions of their discharge preparation, and whether and how they felt discharge preparation impacted postdischarge patient outcomes (Appendix A).

Methods

Using a qualitative descriptive approach, this study examined in-depth experiences of four unpaid caregivers for patients discharged from surgical services of a tertiary academic medical center hospital. Qualitative description supports close evaluation of the words participants use to describe their experiences (Neergard et al., 2009). All procedures were approved by the University of Utah Institutional Review Board.

Sample

The sample included unpaid caregivers of patients discharged from the hospital between February 2, 2020, and March 12, 2020, who had previously agreed to be contacted for follow-up after discharge. All individuals were adults (older than 18 years) who could speak and understand English and were caregivers of patients discharged directly home (vs. to a skilled nursing facility) from an ortho-trauma surgical services or surgical specialty and transplant unit. Patients were excluded if they were admitted for bariatric surgery, organ transplant, or mental health (e.g., suicidal ideation/attempt, intentional overdose, 1:1 observation room), or if they were incarcerated or discharging with hospice. No additional inclusion criteria were applied to caregivers.

Procedure

After completing interviews with patients who had recently been discharged, the interviewer asked the patients to share the research team's contact information with the patients' postsurgical caregiver and to invite them to reach out to the research team member for a separate interview about the caregiving experience. Using this referral technique, 14 caregivers were identified and four agreed to participate. Because interviews were conducted by telephone in April 2020, additional sampling was limited and, instead, focused on the in-depth interviews with a smaller sample. Interviews lasted approximately 20 min. After completing the informed consent process, all interviews were audio recorded and professionally transcribed.

Data Analysis

Transcribed interviews were uploaded into Dedoose, a qualitative coding computer software program (Dedoose Version 8.3.45, 2018). Content analysis was used to analyze the transcripts (Elo & Kyngas, 2008). The first stage of analysis involved thoroughly reading and rereading the interview transcripts. Then, open codes were developed on the basis of the language used by participants (Elo & Kyngas, 2008). The primary author (E.T.) coded the first interview and then reviewed the coding with an additional team member (E.J.). Differences in coding were discussed until agreement was reached. The remaining interviews were then coded following the established process, which was then reviewed by additional team members (A.B., A.S.W). After completion of open coding, the codes were organized and interpreted into themes (Elo & Kyngas, 2008), and all team members discussed differences until agreement was reached (Creswell & Poth, 2016).

Results

All caregiver participants were between 61 and 75 years of age and identified as being the spouse of the patient. Two (50%) were female, all self-identified as White, and non-Hispanic. All participants identified as being spouses of the discharged patient. Analysis resulted in two major themes falling under two distinct points in time: (1) involvement during discharge teaching; and (2) role at home after discharge. Each major theme had two subthemes. See Figure 1 for the major themes and subthemes (Appendix B).

FIGURE 1. Caregiver interview themes.

Theme 1: Caregiver Involvement During Discharge Teaching

During discharge, caregivers largely felt that they received clear instructions during discharge teaching or, according to the IDEAL model, they received basic education. However, throughout the discharge planning process, and specifically during discharge teaching, caregivers described having a passive role suggesting limited engagement in discussing and limited assessment of skill and understanding.

Instructions Clear at Discharge But May Not Always Meet Needs Once Home

Generally speaking, when asked about the quality of discharge teaching, the caregivers described receiving clear instructions that were well understood at the time of discharge. "Their advice was pretty clear and well understood, I think." (Caregiver 3) When asked how discharge teaching went, another caregiver rated discharge instructions on a scale of 1-10, with 1 being terrible and 10 being very well. "[...] I'd say a nine out of ten, very well." (Caregiver 1)

Two caregivers spontaneously made the connection between discharge instruction to postdischarge experiences. One caregiver described the instruction process as clear and straightforward, and afterward, feeling comfortable in their ability to care for the patient once they discharged home. "So that's kind of what we felt, they were clear enough and pretty straightforward as to what needed to be done [...] I can't say that they missed anything, and going home I felt comfortable with it." (Caregiver 4) However, in contrast, one caregiver reflected on adverse patient events that happened after discharge and spontaneously described having not received the information during discharge teaching that they needed once returning home, "[...] we had a hard time getting the information that I think we really needed [...] so that could have been done the first time around and that would have really helped." (Caregiver 2)

Sitting on the Sidelines During Discharge Teaching

When asked about their role in discharge teaching, caregivers described their involvement as being a passive receiver of information and a wish to be more actively involved. One caregiver described their involvement as simply being present as a listener. "I was involved, I was there. I was listening." (Caregiver 1) Referring to doctors and nurses as the "caregivers," one caregiver not only described their role as a passive observer but also feeling "sidelined" during discharge teaching: "Most of the interactions were between [the patient] and the caregivers, I was kind of on the side [...] a lot of the stuff was directed straight at her, and I was like an observer." (Caregiver 3) Another caregiver described an assumption that the care team knew best what the patient's needs were because the care team was at the hospital more often than they were and providing most of the care:

I don't really know [...] because when I was there, I took care of him but they were doing all that stuff too, so I wasn't there the whole time they were [...] So I assumed that they knew what his needs were. (Caregiver 2)

Caregiver 3 expanded on what the others described as passive recipients of discharge teaching by describing his desire to be encouraged, or perhaps invited, by the care team to be more actively involved in the discharge process and recovery at home: "I really think the one thing that maybe could be addressed a little better [...] I wouldn't say forcing, but encouraging me to think more deeply about the recovery process."

Theme 2: Role of Caregiver at Home

Once home, the caregivers described filling the role of a home nurse, completing many tasks they observed nurses and other professionals doing in the hospital. However, while describing these roles, the caregivers also identified clear, concrete gaps in their knowledge about how to care for the patient, with two caregivers attributing their patient's hospital readmission to their own knowledge gaps.

Assuming the Role of Home Nurse

Caregivers described their role at home in terms of tasks they would complete and responsibility they would shoulder in order to care for and support the patient, similarly to how nurses care for patients in the hospital. One caregiver actually described himself as a home nurse. "So, I was her nurse. So, I did everything that needed to be done to ensure that she was safe and accomplished what she needed to be accomplished upon discharge." (Caregiver 1) Caregiver 1 went on to describe some of the ways they filled the role of a home nurse, including medication management and pain management:

When we came home, we had a list of 10 medications, including two narcotics. And I took the role of charting all the times that they were to be given, the quantities, the dosages, and I tracked her pain level. I basically acted like a nurse. (Caregiver 1)

Caregivers also described assisting with mobility, ambulation, and physical therapy (PT). "He had to be careful getting into bed at first. Because it was back surgery, I had to lift his legs to make sure he didn't bend at the waist." (Caregiver 4) Caregiver 1 expanded by describing their role maintaining patient safety during PT and ambulation:

I was doing the PT stuff with her as well, to help her move out of bed and to the bathroom [...] We were discharged with a safety belt that I put around her waist every time that she got out of bed to walk to the bathroom, or to do whatever. (Caregiver 1)

Caregiver 2 also described assisting the patient with mobility and ambulation. "I helped him get dressed, and helped him get to bed [...] just overall care, pretty much, helping him going to the bathroom, helping him walk places, helping him get up, standing up and all that."

Finally, Caregiver 3 reported a role in offering psychological support. "I think mostly psychological support [...] It's hard for her to see the progress sometimes. So, I try to comment on that when I think it's appropriate." (Caregiver 3)

Problems at Home

Throughout the interviews, the caregivers highlighted different problems they encountered at home. Three of the four caregivers described knowledge gaps in how to care for the patient and associated complications postdischarge in the following areas: mobility, medication management, drain care, and sleep. The fourth caregiver reported no gaps in knowledge of how to care for the patient.

Mobility: In response to a question about what the hospital staff could have done to make the discharge process a "10 out of 10 experience," Caregiver 1 described how he felt inadequately trained to think critically about how to prevent a fall or injury to his wife (the discharged patient) while helping her ambulate to the bathroom:

During the night, understand that for at least three days, you've got to make sure that your loved one is able to move safely and be safe [...] And I didn't quite get that, honestly [...] How important my role was, that something bad could happen if I wasn't on my game. (Caregiver 1)

Caregiver 1 went on to explain that because of his lack of training at discharge, his wife suffered a fall in the bathroom and was readmitted to the hospital. The caregiver shared:

I wasn't trained [...] I wasn't aware that I shouldn't have left her sitting on the toilet without being there and supporting her. [...] And the first morning upon waking up, [the patient] had fall. [...] And it was because yours truly went to bathroom first, got [the patient] situated, went out of the room for a moment, and that's when the nausea came, dizziness, blacked out. [...] And so, we went back to the hospital. (Caregiver 1)

Medication management: Caregiver 1 took the time to explain another complication he ran into when it came to helping his wife (the patient) taper down on her pain medication:

We didn't receive upon discharge, a tapering schedule of when to start it, what were the symptoms or lack thereof the symptoms we should look for and then begin [...] you know, what do we try to do? She was on five to six Tramadol's in a 24-hour period. Do we drop that by half, during each dose, or what? We didn't know. (Caregiver 1)

Caregiver 1 then went on to explain the tapering schedule, they eventually used, that he came up with:

Just take one 325 milligram dose out of the two, and do that once a day, and then do that twice a day, because there were three doses. Or three time, to administrate the doses. And then we just began that whole process and based on [the patient's] pain level, we got to the point where she was down to a quarter tab of a 325-milligram tablet, three times a day. And once we got there, we just then took away one dose of the three, and then the second dose of the three, and then left the weening dose for two or three days. And it worked. (Caregiver 1)

Drain care: Caregiver 2 described receiving mixed and incomplete instructions about how to manage the patient's surgical drain. "But I guess the drain care was the main thing because he got different instructions at different times and it would have been nice to have it all at first." (Caregiver 2)

Caregiver 2 went on to describe that the patient developed an abscess due to a lack of proper drain care after discharge and was consequently readmitted to the hospital to replace the drain:

We didn't find out about the back-flushing until the drain was replaced this time around [...] they were really surprised the last time around that I hadn't been back-flushing and maybe that would've made a difference. [...] If I knew what to expect and what it meant that might help more [...]. (Caregiver 2)

Sleep: When asked what could have made discharge instructions more helpful, Caregiver 3 felt that there was a lack of education on how to manage pain and discomforts at night and because of this, the patient slept poorly for the first month after discharge. The caregiver shared:

I think that the sleep aspect was actually the thing that maybe could be addressed in a little more prescriptive fashion. [...] maybe a little bit of more clarity on discomforts in sleep, adaptations, things she could do to help her sleep [...] that's really the only thing I can think of that was kind of an issue for, I don't know, a month or so, something like that. (Caregiver 3)

Specifically, the caregiver felt that more information should have been provided, stating:

And so that would be my one take-away by you [...] I wouldn't say forcing, but encouraging me to think more deeply about the recovery process [...]. Telling her what to expect, and maybe emphasizing which drugs will do what for her and just strategies for better sleep. (Caregiver 3)

No reported complications: Caregiver 4 reported that because this was the third or fourth surgery the patient had recently undergone, they did not feel like anything was particularly missed in the discharge instructions. Caregiver 4 did not report any adverse patient outcomes.

I didn't feel like anything was missing [...]. Maybe if it was my first time, I would be able to think of something, but this is like his third or fourth surgery so I can't say that they missed anything [...] and going home I felt comfortable. (Caregiver 4)

Discussion

When exploring caregiver involvement in discharge processes and whether and how they felt their experience with discharge planning and education affected patient outcomes after hospitalization, we found that while caregivers reported that instructions appeared clear at the time of discharge, upon transitioning home, gaps emerged in their knowledge of how to care for the patient. Caregiver participants provided clear examples of how postdischarge knowledge gaps contributed to challenges with, and even two readmissions related to, core areas of mobility, medications, drain care, and sleep. These findings echo a growing body of literature highlighting how the inclusion of family caregivers during discharge can reduce postdischarge resource use and costs (Rodakowski et al., 2017) and reinforce the AARP-sponsored CARE Act legislation requiring that caregivers are identified, informed, and educated regarding the needs of their loved ones postdischarge (AARP, 2014). However, more concretely, our findings illustrate gaps in caregiver preparedness and, potentially, how intentional, active engagement of caregivers in discharge education may improve patient outcomes, findings that align with others who report that verbal and written health education often places caregivers in an observational versus participant role (Fields et al., 2020).

Shih et al. (2020) collected data surrounding caregiver perception of the patient's readiness for discharge and found that "Family-centered care enables patients to safely pass through the transition phase from hospital to community and reduces the post-release consumption of medical resources" (p. 1355). As patients transition to home settings, caregivers often assume new responsibilities caring for patients. For example, upon discharge from surgical units, patients can go home with surgical drains that need regular emptying and monitoring, surgical wounds requiring daily care at home, a long list of medications to manage, and an overall decreased mobility related to their surgery. Many times, an informal caregiver such as a spouse assumes a large portion of the responsibility of caring for the patient after discharge. In a sense, discharge teaching can be likened to a kind of "shift report" and, using the words of our caregiver participants, informal caregivers are like the "on-coming nurse" but often without formal training and experience.

Our case interviews offer clear guidance about what caregivers believe active inclusion in discharge teaching could look like and demonstrate how the active inclusion of the caregiver could be used to ensure successful transitions from hospital to home. Caregivers described their role in discharge teaching as a passive receiver of information rather than an active participant and, as a consequence, described a lack of knowledge once they got home. As complications in the patient arose, they described not knowing how to handle the issues yet making do as best they could. Two of the four caregiver participants attributed their own knowledge gaps as playing a role in the care recipient's readmissions. Caregivers gave specific recommendations about how involvement in discharge teaching could be improved, describing a desire to be challenged to think more critically about what responsibilities in postdischarge care would look like, giving opportunity to ask questions, be directly involved in discharge teaching, and practice troubleshooting with the nurse.

Alongside the emerging literature suggesting that clear communication and trust are key in high-quality care transitions programs for both patients and caregivers (Naylor et al., 2017), incorporating the IDEAL framework as the standard framework for discharge teaching, including the emphasis on active informal caregiver inclusion, may ultimately decrease the risk for postdischarge complications and overall reduce hospital readmission rates. As described previously, although it appears that caregivers were to some extent Included in discharge Education (caregivers reported receiving clear instructions), their level of involvement was only passive. Caregivers may have reported increased readiness for discharge if they had been able to actively Discuss discharge teaching with the nurse and other health care professionals, ask questions, clarifying teaching points, and practice various tasks they would assume responsibility for postdischarge-such as drain care, ambulation, comfort measures, and medication management. After this active discussion, the nurse and other health care professionals should have Assessed the caregiver's understanding of postdischarge instructions and responsibilities, utilizing the technique of teach-back. This would allow the nurse or other health care professional to clarify misunderstandings and fill in knowledge gaps. And finally, the nurse or other health care professional should have Listened to the caregiver, giving them an opportunity to express their own concerns, goals, and areas where additional support may be needed. As part of this Listen piece, it may be worthwhile to create a Caregiver Readiness for Discharge Scale that specifically measures the caregiver's readiness to care for the patient at home. The IDEAL discharge framework focuses on intentionally engaging the caregiver in the discharge process. While analyzing the different patient-caregiver scenarios explored in this study, it appears that application of the Discuss, Assess, and Listen pieces of the IDEAL discharge framework would have actively involved the caregiver in discharge teaching and may have improved patient outcomes postdischarge.

Limitations

This study is limited in several ways. First, we acknowledge that our small sample of caregivers is from one academic health sciences center, and that this study was conducted in the landscape of several efforts aiming to improve the quality of discharge support. In addition, the timing of the COVID-19 pandemic and the related availability of Telehealth, Home Health, or other community support programs, while not directly addressed during caregiver interviews, may have impacted caregiver perceptions: caregiver interviews took place in April 2020. Finally, all participants from whom demographic data were collected reported their race as White/Caucasian and their ethnicity as not Hispanic or Latino, so representation from other racial/ethnic groups is missing from this study. All this said, the quality of insights and perspectives shared by this sample uncovered common themes and resulted in clear next steps in efforts to improve discharge support for caregivers that may, ultimately, improve patient outcomes and readmissions.

Implications for Case Management

Case managers need to know that caregivers often feel "sidelined" in the discharge process and want to be included as an active participant in all anticipatory planning, education, and preparation. Also important, this study identified that caregivers perceived that they are inadequately educated on a list of vital caregiving needs such as ambulation safety; medication dosing and titration; wound and drain care; and pain, discomfort, and sleep. The readily available IDEAL framework offers case managers an evidence-based process to systematically prepare patients and caregivers for their postdischarge experience. Specifically, IDEAL addresses what to expect as the normal course of healing and recovery and what to watch for as typical "red flags" prompting them to communicate with outpatient providers.

References