Caregiver Experiences of Care Coordination for Recently Discharged Patients: A Qualitative Metasynthesis

Abstract

Caregivers of patients often provide key support for patients after hospitalization. This qualitative metasynthesis describes caregiver perspectives about care coordination for patients discharged from the hospital. A literature search of Ovid Medline and CINAHL completed on May 23, 2018, identified 1,546 studies. Twelve articles were included in the final metasynthesis. Caregiver perspectives about care coordination were compiled into overall themes. A subanalysis of studies in which patients were discharged with home health services was completed. Five main themes emerged related to caregiver perspectives on care coordination after hospitalization: (a) Suboptimal access to clinicians after discharge, (b) Feeling disregarded by clinicians, (c) Need for information and training at discharge, (d) Overwhelming responsibilities to manage appointments and medications, and (e) Need for emotional support.

Findings from this metasynthesis suggest the need for clinicians to engage with caregivers to provide support, training, and communication after hospital discharge.

Increasingly, hospitals in the United States are seeking ways to support patients after hospital discharge. This is largely in response to hospital readmissions penalties and new payment models that increase hospital accountability for spending across care settings, particularly for Medicare beneficiaries (“Bundled Payments for Care Improvement (BPCI) Initiative: General Information,” 2017; Centers for Medicare & Medicaid Services, 2018). Frequently, older adults have informal caregivers who may be friends or family involved in their care. In a national survey of family caregivers, nearly half provided supportive medical care and over three-quarters managed medications for family members (Reinhard, Levine, & Samis, 2012). Because informal caregivers have an important role in coordinating and managing care for recently discharged patients, their experiences in the time following discharge can provide valuable insights. A prior qualitative study from the Netherlands that included patients, caregivers, physicians, and nurses for recently discharged individuals identified themes including variable communication about discharge, patients not feeling ready for discharge, and poor accessibility of hospital physicians after discharge (Hesselink et al., 2012).

After hospital discharge, older adults are also frequently referred for home health care (HHC) services, including skilled nursing, physical therapy, and occupational therapy. In 2013, HHC was the most commonly used post-acute care service among all payers (Tian, 2016). Yet fragmented care coordination between hospitalists, primary care providers, and HHC clinicians (e.g., nurses and therapists) may cause confusion for patients and caregivers, and contribute to adverse patient outcomes following hospital discharge (Jones et al., 2015, 2017). As a result, it is also important to better understand the perspectives of informal caregivers for HHC patients.

Statement of the Problem

Informal caregivers are frequently involved in patient care after hospital discharge, yet their perspectives are not well understood. Improved understanding of caregiver experiences after discharge will help inform improvements in facilitating care coordination between clinicians (e.g., physicians, nurses, and therapists) and caregivers.

Purpose

The purpose of this metasynthesis is to describe the experiences of care coordination from the perspective of caregivers for patients discharged from the hospital, with a secondary question of the experience of caregivers for patients discharged with HHC services.

Methods

A metasynthesis was undertaken to describe caregiver experiences of care coordination as they cared for patients recently discharged from acute care hospitals. The metasynthesis approach was similar to that described by Goins and colleagues (2015). The first step was to complete a thorough literature search, followed by the application of inclusion and exclusion criteria to determine a final sample of articles (Barroso & Powell-Cope, 2000). Once the articles were selected, a critical appraisal was completed for each study using the McMaster University Tool (Letts et al., 2007). We included all studies. regardless of results from the critical appraisal. After appraisal, themes were coded and examined using a general inductive approach (Thomas, 2006), which ultimately led to a synthesis of findings through reciprocal translation (Thomas & Harden, 2008). The detailed approach to each of these steps is included as follows.

Literature Search Strategy

For our study, we defined care transitions as the patient transition from the acute care hospital to home setting. Inclusion criteria included: (a) published in the year 2000 or after, (b) published in English, (c) conducted in the United States, (d) inclusion of caregiver perspectives in the study, (d) primary qualitative study, (e) article published in a journal (e.g., not dissertations or abstracts), (f) patients who were adults age 18 years or older, and (g) setting of a care transition from acute care hospitalization to home with interviews within six months of this transition.

We excluded articles from before the year 2000 because multiple factors in hospitalization and post-hospital care have changed since 2000, including an increasing focus on improving care transitions between the hospital and home through public reporting and hospital readmissions penalties (Centers for Medicare & Medicaid Services, 2018). The rationale for excluding nonUS studies was due to multiple unique factors in the US healthcare system such as insurance coverage, availability/coverage for post-acute skilled services, and community supports available following discharge. The search was run on May 23, 2018, and after the search was run (search strategy in Online Supplementary Figure 1), two authors independently reviewed each abstract using Covidence software (Melbourne, Australia) to ensure that it met the inclusion criteria. Discrepancies were resolved through discussions involving a third author (CDJ).

Quality Appraisal of Identified Literature

Appraisal of critical content was completed using the Critical Review Form—Qualitative Studies (Version 2.0) as a framework (Letts et al., 2007). For all articles included in the metasynthesis, one author completed the primary review and findings were confirmed by a second author (CDJ, KB, SS, CC, and BD).

Analytic Approach for Review and Synthesis

The analytic approach for this study was similar to that described by Goins and colleagues (2015). Quotes, themes and concepts from included studies were coded, compiled, and synthesized using a general inductive approach (Thomas, 2006). Initially, three authors (CDJ, CC, and BD) completed open coding of themes from included articles that specifically addressed caregiver experiences of care coordination for recently discharged patients. Following initial coding, organizing themes were identified, and each article was reviewed by at least one additional author to confirm codes and organizing themes. Organizing themes were considered in the context of the original themes and were evaluated with reciprocal translation (Thomas & Harden, 2008), a process through which an integrative synthesis is completed through interpreting and integrating key themes from several studies to perform a higher level thematic analysis. Disagreements were resolved through group discussion.

In addition to the five key themes, we looked for studies that specifically dealt with patients and caregivers who had HHC after discharge. HHC is a key component for many patients recently discharged from the hospital, and understanding their interactions with caregivers is important. Two studies (Dossa, Bokhour, & Hoenig, 2012; Foust, Vuckovic, & Henriquez, 2012) mentioned the role of HHC in assisting patients and caregivers at discharge.

Results

Search Results

Searches were performed in both Ovid MEDLINE and CINAHL on May 23, 2018, by a research librarian with expertise in systematic reviews (BH). After duplicates and non-English articles were removed, 1,546 records remained. All abstracts were reviewed for exclusion criteria, and studies were removed for the exclusion reasons noted earlier. A total of 12 articles were included in the qualitative metasynthesis, as outlined in the PRISMA chart in Figure 1 (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Blair, Volpe, & Aggarwal, 2014; Coleman & Roman, 2015; Dossa et al., 2012; Foust et al., 2012; Kangovi et al., 2014; Linton, Ing, Vento, & Nakagawa, 2015; MacLeod, 2011; Naylor, Stephens, Bowles, & Bixby, 2005; Ursan et al., 2016; Werner, Tong, Borkenhagen, & Holden, 2018; White et al., 2015).

Figure 1.

PRISMA chart.

Characteristics and Critical Appraisal of Literature

A summary of the 12 studies and characteristics is included in Tables 1 and 2. Among the studies, samples included between 5 and 50 caregivers. With regard to study design, three of the studies were qualitative descriptive, eight were grounded theory, and one was a narrative review. Data collection methods included the following: nine studies used primarily interviews, two used only focus groups, and one used both interviews and focus groups. The qualitative appraisal results are shown in Table 3.

Table 1.

Study Purpose, Methods, and Design.

First Author	Study Purpose	Study Design	Methods	Participants
Bakas, 2002	“To determine the self-reported needs and concerns of African American and white family caregivers of stroke survivors soon after discharge to the home setting”	Grounded theory	Scripted telephone interviews with caregivers up to 6 months after discharge	14 female caregivers of patient hospitalized for stroke within 6 months
Blair, 2014	“To assess challenges, needs and personal experiences of cardiac patients and their informal caregivers”	Qualitative descriptive	20 semi-structured interviews, plus unknown number of focus groups Average 60 min.	18 caregivers and 20 patients > 18 years old admitted to the cardiovascular disease service; either English or Spanish speaking
Coleman, 2015	“To explore facilitators and challenges family caregivers face in assuming post-discharge family caregiving roles and completing complex care tasks.”	Grounded theory	Four focus groups with up to ten family caregivers.	32 total caregivers of patients hospitalized within past 90 days
Dossa, 2012	“(a) to describe patient and caregiver experiences with care transitions to home and community following discharge from the hospital and (b) to identify areas of breakdown in care transitions that involve rehabilitation services.”	Grounded theory	Three separate interviews at 2 weeks (60–90 minutes), 1 month (30 minutes), and 2 months (30 minutes) post discharge.	Nine patients and nine caregivers recruited during inpatient stay—pts 70 years or older, 2+ chronic conditions, mobility impairments for which home PT/OT recommended after discharge
Foust, 2012	To describe “the experiences of patients, informal caregivers, and home health clinicians during the posthospital transition” to home health care	Qualitative descriptive	Baseline interviews within 45 days of HHC admission and a follow up interview 2 weeks after, then modified to a single interview after the 31st patient	40 patients of a HHC agency, 35 caregivers, 6 HHC nurses, and 9 HHC PTs. Patients were newly admitted to HHC, discharged within 14 days and had an informal caregiver.
Kangovi, 2014	To describe the perspectives of low-socioeconomic status, dually-eligible patients on hospitalization and the posthospital transition	Grounded theory	Open-ended, semi-structured interviews conducted with eligible participants or their caregivers within 30 days after hospitalization	25 patients/caregivers eligible for Medicare and Medicaid, scored > 23 or above on the MMSE (or had caregiver to be interviewed), residents of a zip code in which >30% of residents live below the federal poverty level
Linton, 2015	To assess the “inpatient and postdischarge needs pertaining to hospital social work” in Intracranial hemorrhage patients	Grounded theory	Scripted interviews with patients and caregivers lasting 36–38 minutes, > 3 months post discharge	10 patients and their caregivers (II). Patients were recently hospitalized for intracranial hemorrhage
MacLeod, 2011	To recognize “a unitary pattern within the lives of spousal caregivers following their spouses’ discharge from the hospital after CABG surgery”	Narrative review	A minimum of two face-to-face interviews with an optional third interview. The first was within 2 weeks of discharge from hospital to home, the second interview was one week later.	12 participants who were caregivers for a postoperative elective cardiac surgery patient
Naylor, 2005	To “determine rates of cognitive impairment among hospitalized older adults, to identify the needs of these older adults and caregivers during an episode of acute illness and to examine the needs of patients and caregivers immediately after hospital discharge	Grounded theory	Participants were screened for cognitive impairment using MMSE, BDSRS and CAM. Then five patients and their caregivers were interviewed during hospitalization, after discharge at 48 hours, 2 weeks and 6 weeks with one additional caregiver phone interview	Five patients who were 70 or older and their caregivers. They were English speaking, not institutionalized and were admitted for a commonplace cardiovascular, respiratory, orthopedic or endocrine issue
Ursan, 2016	To “present findings regarding the perspectives of patients and their caregivers about hospital to home transitions,” including thoughts about using patient navigators in this setting.	Grounded theory	Participants were interviewed in five focus groups focusing on their illness. 10 caregivers were interviewed in two focus groups. Each group was 1.5 hours.	23 patients in five focus groups and 10 caregivers in two focus groups.
Werner, 2018	To use Human Factors Engineering to identify how structural factors influence discharge from hospital to home.	Grounded theory	90–120-minute home and clinic interviews of 31 older adults recently discharged for heart failure (13 interviewed with a caregiver)	31 heart failure patients (13 of them were interviewed with a caregiver)
White, 2015	To “describe the experience of readmission from the perspective of the stroke survivor and family caregiver”	Qualitative descriptive	Semi-structured telephone interviews within 2 weeks of discharge, a subset of in person interviews during readmission	20 stroke survivors and their caregivers. The patients were readmitted from home in the 6 months following acute stroke.

Table 2.

Summary of findings from each study.

First Author	Summary of findings
Bakas, 2002	Results were organized into the following: 1) Need for more information at discharge. 2) Help coping with the emotional aspects of recovery. 3) Concerns with providing physical care. 4) Issues encountered providing instrumental care. 5) The impact of providing care on caregivers’ lives.
Blair, 2014	Results were organized into the following: 1) Challenges, often related to stresses of caregiving and medication administration 2 Coping through the support of family and friends. 3) Program delivery preferences, including that both patients and caregivers wanted additional education about diet via internet/TV.
Coleman, 2015	Five themes were identified the following: 1) Contributions of caregivers are dynamic and depend on readiness, willingness, and ability of both parties. 2) Caregivers have roles and goals that are unique compared to patient 3) Caregivers do not feel prepared for discharge medication management. 4) Caregivers need encouragement to assert an identity 5) Caregivers often assume primary responsibility for posthospital care plan and next steps
Dossa, 2012	Breakdowns in communication were in four domains: 1) Poor communication between patients and hospital providers regarding ongoing care at home. 2) Whom to contact post-discharge. 3) Provider response to phone calls following discharge. 4) Provider to provider communication
Foust, 2012	Results were grouped into the following themes: 1) Patient and caregiver preparation for hospital discharge: Challenging to get information during hospitalization 2) Adequacy of Discharge instructions: Discharge instructions had few details and limited information about follow up if they had problems. 3) Availability and Legibility of Discharge Instructions. 4) Home Health clinician use of discharge instructions
Kangovi, 2014	Themes that emerged from the interviews included the following: 1) Post-hospital frailty punctuating age-related decline. 2) Post-hospital medical and socioeconomic frailty. 3) Loss of control leads to low self-worth. 4) Factors that influence the decision to accept help. 5) Suggestions for improving the post-hospital transition
Linton, 2015	Themes included the following: 1) Participants needed more information about community resources. 2) Need for emotional support from social workers 3) The importance of self-advocacy in navigating the healthcare system
MacLeod, 2011	Themes included the following: 1) Dyadic relationship life patters influenced caregivers’ roles and responsibilities. 2) Life patterns of caring for self and others were altered 3) Life patterns of certainty and knowing were limiting. 4) Awareness of life pattern gave meaning 5) New perception on life left to live
Naylor, 2005	Conclusions were that the biggest concerns at time of discharge and afterward from patients and caregivers were the following: 1) Managing and negotiating care with multiple providers, managing illness, and psychosocial support and coping 2) Caregivers and patients have a need for increased responsiveness from providers; 1–2 weeks after discharge from home health, there is again need for support.
Ursan, 2016	Results were grouped into the following themes: 1) Hospital discharge process: patients felt discharged prematurely, discharge instructions were not helpful. 2) Socioeconomic resources: lack of insurance, housing, transportation 3) Access to care after hospital discharge. 4) Health care-seeking behaviors: reluctance to seek care, more likely to use emergency room. 5) Patient anxiety 6) Self-management education
Werner, 2018	Findings emerged into four system conditions shaping performance during older adults home to hospital transition: 1) Complexity of the transition process. 2) Unmet need for specialized transition tools. 3) Alignment of self-care routines with hospital-to-home transition needs 4) Workload changes and work overload during hospital-to-home transitions
White, 2015	Results were grouped describe factors associated with re-admission: 1) Preparation for discharge. 2) What to expect when home 3) Complexity of medication management. 4) Support for self-care in the community. 5) Influence of social factors

Table 3.

Quality Appraisal Table.

Critical Review Content	Bakas	Blair	Coleman	Dossa	Foust	Kangovi	Linton	MacLeod	Naylor	Ursan	Werner	White
Study Design
Was purpose and research question stated clearly?	+	+	+	+	+	+	+	+	+	+	+	+
Was relevant background and literature reviewed?	+	+	+	+	+	+	+	+	+	+	+	+
What was the study design? Grounded Theory = GT; Narrative Review = NR; Qualitative Descriptive = QD	GT	QD	GT	GT	QD	GT	GT	NR	GT	GT	GT	GT
Was a theoretical perspective identified?	+	−	+	−	+	−	+	+	−	−	−	−
Methods used? Interviews = Int, Focus Groups = FG, Case Study = CS	Int	Int & FG	FG	Int	Int	Int	Int	Int	Int	FG	Int	Int
Sampling
Was the process of purposeful selection described?	+	−	+	−	−	+	+	+	+	+	+	+
Was sampling done until redundancy in data was reached?	+	+	NA	NA	NA	NA	+	NA	NA	NA	NA	+
Was informed consent obtained?	+	+	+	+	+	+	+	NA	+	NA	+	+
Data Collection
Clear and complete description of site/participants?	+/+	+/+	+/+	+/+	+/+	+/+	+/+	−/+	+/+	+/+	+/+	+/−
Role of researcher & relationship with participants?	−	+	+	−	−	+	−	+	−	−	+	−
Identification of assumptions and biases of researcher?	−	−	−	−	−	−	−	+	−	−	−	−
Procedural rigor was used in data collection strategies?	+	+	+	+	+	+	+	+	+	+	+	+
Data Analyses
Data analyses were inductive?	+	+	+	+	+	+	+	+	+	+	+	+
Findings were consistent with & reflective of data?	+	+	+	+	+	+	+	+	+	+	+	+
Decision trail developed?	NA	+	NA	+	+	NA	NA	+	NA	NA	NA	+
Process of analyzing the data was described adequately?	+	+	+	+	+	+	+	+	+	+	+	+
Did a meaningful picture of the phenomenon under study emerge?	+	+	+	+	+	+	+	+	+	+	+	+
Overall Rigor
Creditability?	+	+	+	+	+	+	+	+	+	+	+	+
Transferability?	+	+	+	+	+	−	+	−	−	+	+	+
Dependability?	+	+	+	+	+	+	+	+	+	+	+	+
Confirmability?	+	+	+	+	+	+	+	−	+	+	+	+
Conclusions and Implications
Conclusions were appropriate given study findings?	+	+	+	+	+	+	+	+	+	+	+	+
The findings contributed to theory development & future practice/research?	+	+	+	+	+	+	+	+	+	+	+	+

Key Themes

We completed reciprocal translation to interpret and analyze themes and quotes from the included studies, which is shown in Online Supplementary Material Table 1. Within the experiences of caregivers coordinating care for recently discharged patients, five themes emerged: (a) Suboptimal access to clinicians after discharge, (b) Overwhelming responsibilities to manage appointments and medications, (c) Need for information and training at discharge, (d) Feeling disregarded by clinicians, and (e) Need for emotional support for caregivers.

Suboptimal access to clinicians after discharge.

Individuals expressed that often it was unclear to them who they should call with questions or problems after they are discharged home. This uncertainty expressed by caregivers implies that clinicians may also be uncertain about who is accountable to address questions from caregivers following hospital discharge. A caregiver from a study by Dossa and colleagues expressed their uncertainty in the following quote.

I mean, if he’s getting sick at nighttime, who do you talk to; who do you call to be able to get a simple answer? Do we just let him sleep it off? Do we give him medication? I mean, I know they do have a primary care doctor, but when the way the hospital works that they have a team that changes from week to week, where my father was seen by the neurology department. I mean, I figured that would be the person that I would want to talk to, not his primary care doctor who hasn’t seen him at all since he was in the hospital.

I don’t know how much she’s kept in the loop of things when they get discharged from the hospital. Yeah, she sees him at a certain time afterward. But, in the meantime, who is the person that you go to if there’s a problem? (Dossa et al., 2012, p. 279)

In one case, a patient was unable to get needed pain medication to continue in physical therapy as the discharging clinicians and the primary care provider disagreed about who should be responsible for refills and follow up.

Yeah, I called there (surgical site). But the people over there, they always tell me I’ve got to go back to the doctor over in (primary care site). And I’m like—I’m going back and forth just like a yo-yo. You know, I call this one, I call that one. And nobody seems to want to give you what you need for the pain. If they gave me what I needed for the pain, I probably could go in and let them bend my leg. But if I’m in there just on Tylenol or aspirin, that ain’t going to do it. And I tell these people, they say, “Well, you know, you’ve just got to go in and probably have it taken care of.” And they’re just therapists. And I was just getting a little disgruntled with the hospital; I called about five times, left messages on the phone for the doctor to get a hold of me because I was having problems in therapy. I kept getting their answering services, and then I said, The hell with it. And my girlfriend called a couple of times. (Dossa et al., 2012 p. 280)

To address suboptimal access to clinicians after discharge one caregiver expressed the desire for access to a hotline for questions.

I suggest a hotline. Different people may answer and call you back and when they do, they’ll listen to whatever your issue is and refer you sometimes. (Blair et al., 2014, p. 35)

Feeling disregarded by clinicians.

The second theme that emerged from this synthesis was that caregivers frequently felt disregarded and underappreciated by clinicians. Caregivers often feel excluded from important discussions between healthcare professionals and patients pertaining to the discharge process. One caregiver described feeling completely left out of the discharge decision:

[W[hen she was released, I was at work. I came home. She was home. (Foust et al., 2012, p. 202)

Within the same study by Foust and colleagues, another caregiver expressed the desire to be more informed about their loved one while they were hospitalized:

[I] would have liked to have been told more about what was going on to him. Just good to be told anything at all. (Foust et al., 2012, p. 202)

In another study by Naylor and colleagues, a caregiver expressed frustration with not having needed information about their loved one:

Right now, I want to know what is wrong . . . . Nobody tells me anything. I haven’t talked to a doctor . . . only once . . . . I am in the dark. (Naylor et al., 2005, p.57)

In a different study, a caregiver described frustration with a clinician interaction in the office setting.

What bothers me is that doctors that I meet here, they ignore the caretakers. Like you can go to the office and the doctor just solely concentrates on the patients, that’s wonderful and we sit in a little corner and we are not allowed to say anything if I said something they will just say, “He is the patient; let him say it to me.” (Blair et al., 2014, p.33)

To counteract these feelings of underestimation and disregard for their role, caregivers described circumstances in which they asserted an active role in care with clinicians, as in this quote:

And usually, believe it or not, I’m an introvert and quiet and shy. But I just had to be massively assertive. So the doctor comes in (and says) you are doing so well, you know. Go home. See me in a month. And I said wait a minute. You can’t leave yet. I was hanging on his pant leg practically! You cannot leave. (Coleman & Roman, 2015, p. 16)

Another caregiver in the same study described a situation in which they were able to provide support and promote improvement due to their intimate knowledge of the patient’s emotions and needs:

I go in and I see my husband in this state—and the recovery nurse just is beside herself because she can’t get him to breathe. And I immediately know what this issue is. He is just so scared and she is missing that he is so scared. It is not that he s unconscious. So . . . I just went in and reached deep down inside of him, to bring him up. And he got better right away—she couldn’t believe he could talk. (Coleman & Roman, 2015, p. 16)

Need for information and training at discharge.

A range of caregiver satisfaction with discharge information was identified across the studies. In the study by Bakas and colleagues (2002), a caregiver of a patient who had recently had a stroke expressed that many concerns were not addressed at discharge.

The only thing they let us know is that he needed to change his diet and go to speech therapy. Well, are there other things that he should be doing totally different? Like, should he stop smoking? Should he be exercising? It seems like if you had a heart attack, they tell you all this stuff, but a stroke is like, I don’t know. (Bakas et al., 2002, p. 244).

However, caregivers in a different study by Foust and colleagues described being satisfied because the instructions were “simple” or “pretty thorough” (Foust et al., 2012, p. 203–204).

An additional type of information that caregivers felt was lacking was in regard to insurance coverage of additional supplies:

Sometimes the insurance questions too . . . people say we are releasing you and you need to get this, that and the other thing and you kind of don’t know, is insurance going to cover it? Do I just go buy it? You just don’t really know. (Coleman & Roman, 2015, p. 17)

Caregivers predominantly described discharge training as inadequate to help them provide optimal care for their loved ones. One caregiver of a patient recently discharged after a stroke described struggling to know how to help the patient with constipation.

There was nobody there that could tell me [about] bowel movements and things like that. . . . When she got home she was impacted . . . . I was there with her alone. She was in pain. (Bakas et al., 2002, p. 244).

Another caregiver gave suggestions for additional training that could be helpful in providing care at home.

Maybe we should be encouraged as caretakers to learn how to take blood pressure, you know, do that for ourselves so that we would know what’s going on. (Blair et al., 2014, p.35)

Overwhelming responsibilities to manage appointments and medications.

Caregivers in multiple studies described feeling overwhelmed by their responsibilities as a liaison for medication and appointment management. One caregiver described having to do “everything” for the patient.

I pretty much do everything for him. I give him his medications, take him to doctor S appointments, I drive him everywhere. I pick up his medicines at the pharmacy. Not once has he ever had to make a trip to the pharmacy to get his medications. I do that for him. I cook his food; he can ‘t have salt so I cook without salt. (Blair et al., 2014, p. 33)

In addition, many caregivers described managing medications for their loved ones as a source of many challenges, as this caregiver described in a study by Coleman and colleagues:

Then I get him home and try to put his new pills with the ones he is already on and they are different names. They are different colors. They are . . . . Oh my gosh! It is so confusing. Why in the world, when you are taking this particular prescription pill, why is it if you order It from this particular outlet, why is it this color? And this shape? But then you go through his mail order and it comes in a totally different shape or color. (Coleman & Roman, 2015, p. 15)

Yet pharmacists were helpful facilitators in navigating a patient’s medication regimen, as in this quote from a study by Coleman:

The pharmacist was my lifeline . . . . I mean she sat there (with me) for like 20min on a bench. Other pharmacists are filling things and she’s just sitting with me. And that just made all the difference. (Coleman & Roman, 2015, p. 15)

Need for emotional support for caregivers.

A final theme was that caregivers were often emotionally and physically exhausted, with little support from clinicians. In many cases, they were the only caregiver providing all of the day-to-day care for the recently discharged patient. This role was often new, and many caregivers cited a need for more information and support about the emotional aspects of caregiving. In the study by Coleman and colleagues, one caregiver lamented a physician’s lack of concern:

They shouldn’t just look at the needs of the patient. They should look at the needs of the family . . . if they are going to take the time to ask what are (the) goals of the patient . . . then they should ask what do you need to have that happen at home? (Coleman & Roman, 2015, p. 15)

Several studies mentioned that at follow up interactions, all of the focus was on the patient with a lack of attention to the needs of the caregiver, who was often the main or only source of support at home for the patient.

When I took my husband to the doctor, everyone asked him how he was doing.I said to the doctor, “I know he’s sick, but why doesn’t somebody ask me how I’m doing?” (Bakas et al., 2002, p. 249)

Though caregivers lacked direct support from clinicians, many of them found emotional support from other sources including family and friends as noted by one caregiver in Blair et al.

I have friends I have people in Florida, my son is in Hawaii, friends locally, they call and check on me see how I’m doing. We go out for lunch or dinner. I am very lucky to be surrounded by good friends. I am surrounded by my wife and family and my children and grandchildren, and I don’t have any problems coping with the situation. (Blair et al., 2014, p.30)

Other caregivers turned to religion as a source of spiritual and emotional support as noted in Naylor et al.

My greatest strength comes from the Lord, my religious beliefs. I believe that God doesn’t us more than we can bear. And if it is my task to take care of him, I just bear with it. (Naylor et al. 2005, p.58)

Subgroup Analysis of Studies Including Home Health Care

Within the metasynthesis, two studies included caregivers of patients receiving HHC immediately after hospital discharge (Dossa et al., 2012; Foust et al., 2012). In the study by Foust and colleagues, key themes identified were primarily related to feeling disregarded by clinician, as noted in the prior section. Another caregiver in this study felt frustrated with attempts to connect with clinician while their loved one was in the hospital, and then noticing that when the clinicians finally interacted with her, it was on the day of discharge.

Because I was very upset, I mean very upset. I been going up there, like I said, when I was able to five times while she s been in there and I haven’t spoken to anybody. It’s weird that, you know, the day I came to get her to take her home, then somebody, the nurse, the discharge nurse, wound up explaining to me, you know, the status and what was happening to her. (Foust et al., 2012, p. 202)

The second study that included caregivers of patients receiving HHC was conducted by Dossa and colleagues (Dossa et al., 2012). The key themes in this study were about the caregiver having suboptimal access to clinicians after discharge to address their need for information and training at discharge. One context that captured the theme of need for information and training was from the perspective of a patient and their caregiver who both expressed confusion about what to do with a wedge that fit between the patient’s legs. The patient had been given the wedge after an operation that required him to lay on his back, which contributed to development of a pressure ulcer.

Caregiver: “When they gave us the wedge, they never told us when he could cease having them on. And I kept saying, ‘How long do you have to wear this?’

Patient: “When I went to have my staples removed, I asked the surgeon, Well, when can I get rid of the wedge in between and use the pillow?

‘Now. ‘

Well, when can I lay on my side?

‘Now. ‘

Everything he says, ‘Now’

Well, could it have been much sooner?”

Caregiver: “We don’t know. ”

Patient: “I don’t know. Because I needed to get off my back for the bed sores, you know?” (Dossa et al., 2012, p. 279)

Discussion

Within this metasynthesis of qualitative studies of caregivers about perceptions of care coordination after hospital discharge, we identified key needs for communication, information, training, and role recognition for caregivers as they interact with healthcare professionals. Specifically, caregivers expressed multiple deficiencies in their ability to access clinicians (both inadequate information and training received at discharge), feeling that the caregiver role was disregarded and not recognized by clinicians, and the lack of emotional support for caregivers. Within studies in which patients were receiving HHC, themes were focused on challenges with accessing clinicians, missing information and training, and feeling disregarded by hospital and office clinicians.

This metasynthesis adds to prior work in this area by focusing on caregivers’ experiences of care coordination, with a subgroup analysis to include caregivers who had interactions with HHC clinicians. In a prior metasynthesis by Lindahl and colleagues to study the relationships between patients, caregivers, and health professionals in home care settings, the two main themes identified were with regard to “being there” and “home care as a co-creation” (Lindahl, Liden, & Lindblad, 2011). The authors concluded that when patient and caregiver perspectives are disregarded in the home setting, it can be interpreted as an exercise of power by home care clinicians. One might also make the case that when caregivers feel that their perspectives are disregarded in the hospital, this could be interpreted as an exercise of power by hospital clinicians. Potentially, some cases where patients and caregivers perceive clinician disregard may be unintentional and may result from the clinicians being unaware that a caregiver is present and active in the home setting. Regardless, both discharging clinicians and primary care clinicians are responsible for providing excellent care in both hospital and office settings around discharge. This requires integration of both patient and caregivers during and after hospitalization.

Of interest, in the studies that included caregivers of patients receiving HHC, the quotes in which caregivers described feeling disregarded were most frequently in the hospital setting rather than in the context of interactions with HHC clinicians. Although this may be coincidental, it is worth examining further how patient and caregiver perceptions of interactions with clinicians in the home setting versus in the hospital or office setting might differ. Because HHC clinicians have additional insight about challenges related to mobility and medication management from visiting the patient in the home, initiatives to improve support for patients and caregivers after discharge should engage HHC clinicians as key partners.

For many patients, the execution of a hospital discharge plan depends completely on their caregiver’s ability to carry out that plan. Yet the emotional, physical, and spiritual well-being of caregivers at discharge is frequently not a focus for hospital clinicians. In recent years, the concept of caregiver burden has increasingly been studied, and yet many of the key drivers of caregiver burden around the time of discharge are not well understood (Mansfield et al., 2016; Ringer, Hazzan, Agarwal, Mutsaers, & Papaioannou, 2017). This metasynthesis could provide some insights, including the need for emotional support for caregivers. Many caregivers described feeling overwhelmed with their new responsibilities, and were seeking reassurance and support at the patient’s follow up appointments. They also described situations where they felt ignored or undervalued in their role as day-to-day caregivers. HHC clinicians see the patient and caregiver in the home environment and may be instrumental to help provide caregiver support and address caregiver burnout.

Limitations to this study include not having access to the original qualitative data for each study so that interpretation of themes was limited to the data as it was published. Another limitation of this study is that it does not contain clinician perspectives of the discharge process, which are also important in understanding all of the viewpoints involved in an effective discharge. It is also possible that some caregivers who are motivated to participate in caregiver studies have had either an exceptionally positive or negative experience, and their perspectives may not be representative of the typical discharge experience.

Overall conclusions from this metasynthesis suggest that more work is needed to engage caregivers in a meaningful way throughout the continuum of hospitalization from admission to discharge and beyond. Specific improvements should focus on ensuring that adequate information and training is provided to caregivers while the patient is still in the hospital so that they have the confidence to provide optimal care after discharge. In addition, caregivers should be provided with access to clinicians after discharge to contact with questions about symptoms, medications, and appointments. Steps are being taken in this direction including the passage of the Caregiver Advise, Record, Enable Act (CARE Act) in many states, which requires patients to identify a caregiver on admission to the hospital. The caregiver must then be notified of plans to discharge, and should receive training and education about how to care for the patient at home. Although the CARE Act mandates that hospitals pay greater attention to caregivers during the hospital stay and at discharge, it does not speak to the specific types of education and assistance that caregivers would most benefit from (Anthony, 2018). Studies such as this one could help hospitals target discharge training and education around areas that are of greatest concern to patients and caregivers.

For patients and caregivers with HHC services, clinicians from both hospital and office settings could gain valuable insights from HHC clinicians about the patient and caregiver needs. Such insights could guide clinicians in multiple settings to provide needed support for patients and caregivers as they transition from hospital to home. The next steps would include developing specific interventions in the discharge process to address the concerns of caregivers enumerated in this study. These interventions would best be implemented by a team including the discharging clinicians, HHC, and the patient’s primary care provider.