Care Transitions from the Hospital to Home for Patients with Mobility Impairments: Patient and Family Caregiver Experiences

Authors

  • Almas Dossa PhD, MPH,

  • Barbara Bokhour PhD,

  • Helen Hoenig MD, MPH


Abstract

Purpose

Our study described patient and caregiver experiences with care transitions following hospital discharge to home for patients with mobility impairments receiving physical and occupational therapy.

Methods

The study was a qualitative longitudinal interview study. Interviews were conducted at 2 weeks, 1 month, and 2 months post discharge. Participants were men, Caucasian, between 70 and 88 years old, and had either a medical or surgical diagnosis.

Results

Breakdowns in communication in four domains impacted continuity of care and patient recovery: (a) Poor communication between patients and providers regarding ongoing care at home, (b) Whom to contact post discharge, (c) Provider response to phone calls following discharge, and (d) Provider-provider communication.

Discussion and Conclusions

Improved systems are needed to address patient concerns after discharge from the hospital, specifically for patients with mobility impairments. Better communication between patients, hospital providers, and home care providers is needed to improve care coordination, facilitate recovery at home, and prevent potential adverse outcomes.

The American Geriatric Society describes transitional care as “a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location” (Coleman & Boult, 2003). A growing body of evidence suggests that older patients with complex chronic disease are particularly susceptible to breakdowns in care, have greater need for continuity and coordination of care because their multiple medical problems tend to be treated by many different providers, and thus have the greatest need for transitional services (Naylor, 2006; Sato, Shaffer, Arbaeje & Zuckerman, 2011; Wenger & Young, 2007). High quality transition of care is essential for these patients to achieve optimal outcomes (Coleman & Boult, 2003; Gittell, Fairfield & Bierbaum, 2000; IOM, 2001). However, previous studies on continuity and coordination of care in vulnerable elders focus primarily on medical issues and have little emphasis on patients with mobility impairments receiving rehabilitation services such as physical and occupational therapy (Wenger & Young, 2007).

Poorly executed transitions can lead to high readmission rates and greater utilization of emergency room and ambulatory care visits (Coleman et al., 2002; Murtaugh & Litke, 2002; van Walraven, Seth & Austin, 2002). Quantitative and qualitative studies have identified a wide range of communication breakdowns leading to gaps in care (Arora et al., 2010; Boockvar, Fishman & Kyriacou, 2004; Coleman, 2003; Coleman, Parry, Chalmers & Min, 2006; Foust, Vuckovic & Henriquez, 2011; Harrison & Verhoef, 2002; Naylor, 2008; Parry, Coleman, Smith & al, 2003; Spehar et al., 2005; van Walraven et al., 2002). These studies primarily focus on immediate post-acute care medical issues following hospital discharge such as physician communication, medication follow-up, diagnostic test follow-up, and medical record continuity, but not on longer term follow-up specifically for older patients with mobility impairments.

The home healthcare setting is a unique site that is in need of improved transitional care and outcomes (Naylor, 2006). The burden on caregivers of patients with mobility impairments can be especially great. In a population-based study of older patients, 13% of all patients receiving home health care were found to have adverse events, most of which were associated with discharge from the home health agency when requiring continued assistance (Madigan, 2007). Thus, not only is it important to study transitions from the hospital to home, but transitions from home health agency to self-care should be studied as well. Sparse research exists on the longitudinal transition experience of older patients with mobility impairments specifically receiving rehabilitation services as they transfer from the hospital to home and into the community. The purpose of our study was to (a) 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 involved rehabilitation services.

Methods

We conducted a longitudinal qualitative study of patients discharged home from an acute care Veterans Affairs (VA) hospital. A qualitative approach was chosen to gather in-depth information from both patients and caregivers as they underwent transitional care.

Sample and Data Collection

The convenience sample consisted of 18 participants: nine patients and nine caregivers who were recruited during their inpatient stay following Institutional Board Approval. Patients were eligible if they were 70 years or older, had two or more chronic conditions, had mobility impairments for which they received inpatient physical and/or occupational therapy with recommended follow-up home rehabilitation services at discharge from a non-VA community agency, and had an involved caregiver. Patients with cognitive impairments were excluded from the sample. Patients identified by chart review were contacted by hospital social workers or rehabilitation therapists to assess their interest in participation. Following verbal consent, we met with patients and caregivers to describe the project and obtain informed consents.

We conducted patient and caregiver interviews at three different time points. First, they were interviewed 2 weeks post discharge at their home. Following the initial interview, we conducted 30-minute follow-up telephone interviews at one and 2 months post discharge. The initial interview was approximately 60–90 minutes long and follow-up interviews were 30 minutes. We used the same semi-structured interview guide for patients and their caregivers, and interviewed them together in most cases. All interviews were audio-recorded. Interview guide questions for the first interview included probes on home discharge preparation, referral processes to home and outpatient therapies, experiences during hospital stay, experiences at home with follow-up care from providers, and communication between patients and providers and between providers across settings. The follow-up interviews included probes on experiences with home health providers, communication between patients and providers across settings, experiences following home health care discharge, functional activities at home, and community re-integration.

Analysis

Interviews were transcribed verbatim, reviewed for accuracy, and transcriptions entered into a database using Atlas.ti 5.5 for data management, coding, and analysis. We used a “thematic” coding technique informed by grounded theory methodology (Creswell, 2007), where we attached labels to specific sections of text to identify responses to specific questions and to capture emergent themes (Coffey & Atkinson, 1996). Data analyses included memo writing to explain and elaborate the coding strategies, sort out major issues, gain insight into key areas, and explain connections among the codes (Coffey & Atkinson, 1996). Codes were collapsed and grouped together based on similarities. To maximize the trustworthiness of the data and limit threats to validity, two of the authors (AD and BB) coded transcript segments, compared coding notes, discussed areas of disagreement, developed a final coding list, and discussed theme formations and interpretations together for plausibility and coherence (Denzin, 2000). Specific techniques to establish transparency, authenticity, and credibility included post-interview notes, an audit trail, and memoing (Charmaz, 2006; Chiovitti & Piran, 2003). In addition, we included triangulation by studying the medical record information to ensure that they matched with the patient transcripts.

Results

The patient participants were all men, Caucasian, and between 70 and 88 years. The discharge diagnoses included total hip or total knee replacements, laminectomy, diabetes, arthritis, coronary artery disease, hypertension, and alcohol abuse. All nine caregivers were women: four were spouses, two were significant others, and three were daughters.

We identified four domains that appeared to impact continuity of care and patient recovery following hospital discharge. All domains were related to different types of communication difficulties. The domains were: (a) Poor communication between patients and hospital providers regarding ongoing care at home, (b) Whom to contact post discharge, (c) Provider response to phone calls following discharge, and (d) Provider to provider communication. We provide explanations and examples of each of these below. We then describe a case study involving pain medication in which communication breakdowns led to interference in receiving pain medication, which in turn led to adverse outcomes.

Poor Communication between Patients and Hospital Providers Regarding Ongoing Care at Home

Patients experienced difficulty in receiving accurate information from the hospital about safety equipment, which led to patient dissatisfaction and potential adverse outcomes.

One surgical patient needed to use a wedge between his legs post surgery, but neither he nor his caregiver had any idea how long he should continue this once he got home. The patient continued to lie on his back because of the wedge, which prevented healing of a bed sore that he had acquired during his hospital stay.

First Interview

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?

Another surgical patient complained about his toilet seat at home, and was not sure why his hospital therapist did not discuss giving him a high toilet seat.

First interview

Patient:

The only thing was, uh, the toilet in the hospital was raised up high and this one here—(at home) It's a high toilet, but it's not as high. And the first thing I did was I leaned too heavily on one of the crossbars and broke it the first day I was home. So my poor son-in-law had to come down and fix up a new bar in there for me. I have to be very careful with sitting on the toilet.

Whom to Call Post-Discharge

Patients frequently did not understand whom to contact for post-acute care issues once home, which led to a lack of continuity of care. The VA hospital would call the patient a day or so after discharge, but many of the medical issues occurred several days after discharge at which point there did not appear to be a plan for further contact. The caregiver daughter of a medical patient discusses concerns for her father.

Second interview

Caregiver:

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?

Provider Response to Phone Calls Following Discharge

Many patients stated their inability to get hospital providers to call them back.

First interview

Patient:

That's what we're talking about now, with my therapist now. He's been trying to reach (the hospital)—yeah, to get permission for me to go to outside therapy to a hospital here rather than VA. He made phone calls trying to get this set up, to get something sent over the net—they just wouldn't respond.

The lack of response to their phone message led to delays in initiating his outpatient therapy and the patient went without therapy for 2 weeks.

Both patient and home care providers had difficulty reaching the hospital providers. This surgical patient who lived more than an hour from the surgical-site hospital tried to call the hospital to find out if his visiting nurse or his local VA hospital could remove the stitches.

First Interview

Patient:

But we tried to get a visiting nurse to remove the stitches. I kept calling. I had two nurses and one therapist calling constantly. They wouldn't return the phone calls, and we tried to get permission from them to let the stitches be removed here, rather than make a round trip to (the hospital) for a 2 minute procedure, you know?

And they said, “Oh no, the doctor wants to see you.” So, I went to the hospital and he got the stitches pulled and I didn't even go to the same hospital. And I thought, Well, the doctor will be there. There was some doctor I never heard of there. Then what was the point of me going—You know, I could have had it done right here at this VA or by my visiting nurse.

Provider to Provider Communication

A lack of communication between providers at hospitals, outpatient clinics, and home care agencies led to lack of continuity of care. One surgical patient was caught in the middle between his surgeon and his VA outpatient therapist because of a disagreement about the types of exercises that his home therapist had him do.

Second Interview

Patient:

I told the surgeon and the VA therapist, that I've been doing these exercises for 3 weeks, you know. And he (VA outpatient therapist) grabbed the list that I had brought in with me that my home therapist was having me do, and he looked at it, and he said “And you can't be doing those.” And he crossed all these out.
And I asked the surgeon a couple days ago when I was down there about what was that all about. And he said “Well, quite obviously, somebody didn't understand your situation.” Well, come to find out, this therapist at the VA is, according to the surgeon, he was incorrect, and I could be doing these exercises.
So they (VA OP therapist) claimed there was nothing they could do for me, which is contradictory to the home therapist. The home therapist had me doing exercises that the VA therapist told me I should not be doing. So who's right and who's wrong? I don't know.
It seems like there ought to have been a little better communication there.

Despite the common electronic medical record shared by VA facilities, patients did not feel that there was communication between the different facilities. One surgical patient who lived a distance from the VA surgical-site hospital, but who had his primary care provider (PCP) at a VA hospital closer to home, discussed the lack of communication between the sites.

First Interview:

Patient:

You know, my primary will tell me, “Well, tell (surgical site) this.” Well, why don't you tell him? Why don't you call (surgical site)? And (surgical site) will say, “Well, tell your primary this.” So, it all goes through me. Don't you people have a telephone, you know? It seems rather ridiculous, but they just don't deal with each other. And don't even agree with each other. One will prescribe one medicine and they'll prescribe another. And all they say is, “(PCP) will bow to (surgical site),” and say, “Okay, do whatever they say.” There's no communication here —I don't know what the problem is.
They don't work close, they work independent of each other.

Pain Medication Communication Problems as an Exemplar

The domains of communication problems identified above often co-exist with one another thereby creating a breakdown in quality of care. We now present a single case in which these problems surrounded inadequate pain management for a post-surgical patient who we followed longitudinally. These problems led to a lack of continuity of care and adverse outcomes.

During his first interview, this surgical patient stated that he had tried very hard to get hold of his doctor to get a prescription refill for pain medication.

Patient:

I tried to get through to them, but I couldn't get nobody. But, uh, I was going to call, see if they could get me a prescription and then I could have went down and picked it up, you know. But no, it never happened.

The patient stated that his VA outpatient therapist was going to contact his doctor about his continuing pain and lack of ability to do his exercises, but the patient still did not hear back.

Patient:

I thought maybe they would call me and tell me they had a prescription for me, to go pick it up. But I haven't heard anything.

In our second interview, this patient stated that he continued to have issues communicating with his doctor about his pain medication. Although his surgeon did give him a prescription, he ran out of his medications again. This patient still did not know who to contact.

Patient:

But, like I said, now they're (medications) just about out. So I don't know if I should call him back or go to my own doctor.

In our third interview, we asked again about pain medication follow-up and communication with the primary care doctor and surgeon for pain medication. Due to this lack of communication the patient had become extremely frustrated, stopped his therapy, and tried to do the exercises on his own.

Patient:

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.

His therapists told him to contact his surgeon about the possibility of having a manipulation procedure under anesthesia.

Interviewer:

Did the physical therapist try to talk to the surgeon?

Patient

No, she told me she couldn't do that. She said I had to initiate the thing. I had to call them and get it going. I guess it's not their place or whatever. I don't think they get involved with that. I think they just do the therapy.

Unfortunately, by the time the patient went to the surgeon for a follow-up visit it was too late for a manipulation procedure and the patient ended up with restricted knee motion. This could potentially lead to long-term problems such as gait dysfunction.

Discussion

Our findings demonstrated that patients and caregivers had difficulty with communication issues regarding post-hospital care, accessing hospital staff, whom to contact for post-acute care problems, and between-provider communication. Many of these problems led to poor continuity of care. This type of poor care coordination could potentially lead to adverse outcomes including safety problems, reduced function, delayed healing of bed-sores, and patient dissatisfaction. We used a novel approach where we followed patients longitudinally and included both medical and surgical patients. Thus, we add onto the sparse literature on transition issues for patients with rehabilitation needs providing more in-depth information about patient communication problems.

Other studies show that continuity of care has been shown to be associated with improved physical functioning, reduced institutionalization, decreased readmissions, better quality of life, improved adherence to medical care, greater satisfaction with services, and better community function (Adair, McDougall, Mitton & Joyce, 2005; Coleman et al., 2004; Gwadry-Sridhar, Flintoft & Lee, 2004; Hyde, Robert & Sinclair, 2000; Naylor, Brooten & Campbell, 1999; van Sevellen, Fongwa & Mockus, 2006). Our study findings suggest that problems with continuity of care issues can be closely linked with breakdowns in communication with providers and may subsequently lead to adverse outcomes. A lack of communication between providers and between providers and the patients has been identified in a previous study of knee surgery patients (Weinberg & Gittell, 2007). Our findings regarding potential outcomes are also supported by the same study, where patients who were surveyed reported coordination and communication problems between providers and themselves that were associated with greater joint pain, lower functioning, and lower patient satisfaction six weeks post surgery.

Many of the recommendations made to health-care organizations to promote effective care transitions focus on hospital discharge issues and immediate post-acute care needs (Coleman & Fox, 2004a,b). Other studies on continuity of care focus on patient perspectives on coordination and communication between home care providers and clients (Woodward, Abelson, Tedford & Hutchison, 2004). We add onto this literature, but focus specifically on communication problems leading to continuity of care issues for patients with mobility impairments and rehabilitation needs.

This study demonstrates the importance of continued communication between hospital providers, follow-up providers, and patients following hospital discharge and return to community as is noted in several important models of care coordination. Haggerty's multidisciplinary perspective on examining continuity of care identifies “relational continuity of care,” which refers to an “ongoing therapeutic relationship between a patient and one or more providers” (Haggerty et al., 2003). The lack of this ongoing therapeutic relationship is seen in our study where patients had no idea who to contact post discharge when they had medical issues. Haggerty also identifies “management continuity of care,” which is particularly important for patients with complex chronic disease where care is provided by multiple providers who need to coordinate with each other. Thus for patients in our study, improved communication between providers could have resolved problems such as the discrepancy in the exercise protocol. Moreover, others have described the meaning of coordination to consumers to include three components of coordination: communication between providers and consumers, knowledge about procedures, and involvement of consumers in their own care (Harrison & Verhoef, 2002). Improved responses to telephone calls and knowing whom to call could have avoided delays in getting necessary treatment and information, and would thereby address these consumer-based components of good care coordination.

Our study is limited by inclusion only of patients who were cognitively able to participate in the interviews and who had caregivers. Thus, we did not have information on patients who had no social support or who were having transition problems due to their cognitive issues. Another limitation is that we were only able to obtain perspectives of patient and their caregivers and did not interview providers. Patients in our study were all men, typical of the VA population where only 8% of veterans are women. Caregivers were all women, which is representative of the VA caregiver population. All participants were Caucasian. Our sample size was limited and thus we may not have picked up on all concerns. In spite of the sample size, we did identify important communication difficulties, and research needs to continue in this important area with larger numbers of patients. Although our findings are restricted to veterans, patients in the private sector have similar concerns, and our recommendations may be useful for other settings. Further research should examine the association between different types of breakdowns in communication and patient outcomes for older patients with mobility impairments and rehabilitation needs from the patient, provider, and site perspective.

Practice Implications

Our findings suggest that to improve care coordination and facilitate recovery at home, we need systems in place to address patients' communication needs. In terms of hospital provider response to phone calls following discharge, there needs to be a better way for post-surgical patients to get in touch with their medical providers. Providers need to have a designated person to return phone calls to patients. In a previous investigation of processes of care desired by 26 community-dwelling older adults with multiple comorbidities, participants suggested having a single coordinator of care or contact person to address their ongoing needs (Bayliss, Edwards, Steiner & Main, 2008). This could be a “transition coach” or a “systems navigator,” usually an advanced practice nurse used in some of the more sophisticated interventional care transition models shown to reduce readmissions and costs (Manderson et al., 2011; Naylor, 2008; Naylor et al., 2011; Voss et al., 2011). Alternatively, a medical assistant trained in the transition needs for complex patients could coordinate information between the provider and patient.

Specifically, the bedside rehabilitation nurse should ensure that both the patient and caregiver are involved during discharge planning. Discharge information should be legible, in large type, and include accurate information on whom the patient and caregiver need to call if there are medical issues. Healthcare teams must ensure that this specific contact person is appropriate and has sufficient knowledge about the patient. If possible, more than one contact phone number should be provided in the event that the patient and caregiver do not meet with success with the first phone number. The hospital team phone number and the patient's primary care practitioner and other follow-up practitioner numbers could be provided. Discharge information should include information about how to set up outpatient referrals, which could avoid delays in follow-up visits. In addition, improved communication surrounding equipment needs and appropriate use may be essential to enhance home safety. Patients need to be considered as a patient of the hospital even after discharge. However, all providers in the continuum of care need to take responsibility.

Home care nurses following rehabilitation patients already have experience providing complex patient care common to those described by the “health coach” transition care models. If these tools are combined with other competencies such as motivational interviewing, their role as “health coach” can be easily demonstrated as defined by this type of community-based transition model (Hennessey & Suter, 2011). Home care nurses can also ensure that patients are followed up by their primary care practitioner in a timely fashion, as this is essential to improve care transitions (Misky, Wald & Coleman, 2010). In addition, there should be a thorough review of discharge instructions, follow-up appointments, and who the patient should call if there are problems. Clinicians need to verify the presence and legibility of these instructions and to ensure that patients and caregivers understand them.

We identified cross-provider communication to be as great a problem as that between patient and provider. Nurses and physical therapists are well positioned in the home care environment to talk to surgeons about pain medication issues, exercise protocols etc. Patients and their caregivers should be assisted in dealing with any existing controversies. Patients specific to the VA should also be given information about the 24-hour nurse managed VA hotline that they can call for post-acute care issues. Facilities need to set up better systems to talk with one another. As the VA runs the largest integrated healthcare system in the country, it is an ideal center to provide this type of service, but follow-up with non-VA providers can enhance the navigation problems that patients have.

Providing and ensuring seamless communication during care transitions to ensure quality care coordination can place considerable pressure on community systems of care, especially for services that extend over longer periods of time, such as rehabilitation services for older patients with mobility deficits. We need to ensure that these transitions are well organized, which in turn may contribute to reduced readmissions and institutionalization, and improved quality of life for patients. In this era of shorter hospital stays, more attention needs to be paid to recovery at home.

Biographies

  • Almas Dossa, PhD, MPH, was a postdoctoral health services research fellow at the Center for Health Quality, Outcomes, and Economic Research, VA Bedford, MA at the time the study was conducted. Address correspondence to him at adossa@bu.edu.

  • Barbara Bokhour, PhD, is Research Health Scientist, Center for Health Quality, Outcomes, and Economic Research, VA Bedford, MA; and Associate Professor, Boston University School of Public Health, Boston, MA.

  • Helen Hoenig, MD, MPH, is Chief, Physical Medicine and Rehabilitation, Durham VA Medical Center, Durham, NC; and Associate Professor, Duke University, Durham, NC. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.

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