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Stroke Survivors' Perspectives on Post–Acute Rehabilitation Options, Goals, Satisfaction, and Transition to Home

Krishnan, Shilpa PT, PhD; Hay, Catherine C. PhD, OTR; Pappadis, Monique R. PhD; Deutsch, Anne PhD, RN, CRRN; Reistetter, Timothy A. PhD, OTR

Journal of Neurologic Physical Therapy: July 2019 - Volume 43 - Issue 3 - p 160–167
doi: 10.1097/NPT.0000000000000281
Research Articles

Background and Purpose: Patients and caregivers have not typically been involved in the selection of a post–acute care (PAC) provider. In 2015, the Centers for Medicare & Medicaid Services proposed the need to involve patients and their families during discharge planning. Engaging patients in rehabilitation decisions encourages shared decision making among patients and their clinicians. The purpose of this study was to examine stroke survivors' perspectives on their involvement in selecting a PAC provider and their goal setting and their satisfaction with the rehabilitation stay and their discharge advice for stroke survivors, prior to 2015.

Methods: This qualitative study utilized semistructured interviews. Thematic content analysis was performed on interviews involving 18 stroke survivors (mean age = 68 years) related to their involvement in planning for their inpatient rehabilitation facility or skilled nursing facility stay, goal setting, and discharge needs.

Results: More than half the participants were not involved in the selection of their PAC setting and believed that doctors made these decisions. Around two-fifths of stroke survivors reported that they were not involved in rehabilitation goal setting. Most patients were satisfied with their rehabilitation stay. When asked to recommend discharge topics for other stroke survivors, participants recommended additional information on health care services, interventions, and insurance coverage.

Discussion and Conclusion: Despite recommendations to include stroke patients in PAC selection and goal setting, many former inpatient rehabilitation facility and skilled nursing facility patients report not being involved in either aspect of care.

Video Abstract available for more insights from the authors (see Supplemental Digital Content 1, available at:

Division of Physical Therapy, Department of Rehabilitation Medicine, Emory University, Atlanta, Georgia (S.K.); School of Occupational Therapy, Texas Womens University, Houston, Texas (C.C.H.); Division of Rehabilitation Sciences University of Texas Medical Branch, Galveston, Texas (M.R.P.) and Department of Occupational Therapy, The University of Texas Health San Antonio, San Antonio Texas (T.A.R.); Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago, Illinois (A.D.); Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, Illinois (A.D.); and Quality Measurement and Health Policy Program, RTI International, Chicago, Illinois (A.D.).

Correspondence: Shilpa Krishnan, PT, PhD, School of Medicine, Department of Rehabilitation Medicine, Division of Physical Therapy, Emory University, 1462 Clifton Rd, NE, Ste 276-M, Atlanta, GA 30322 (

This work was supported by the Agency for Health Care Research and Quality (R24 HS022134 and R01-HS024711); National Institute on Disability, Independent Living, and Rehabilitation Research (90SFGE0002, 90AR5009); UTMB Institute for Translational Sciences support by an NIH Clinical & Translational Science Award (UL1TR001439); and UTMB Claude D. Pepper Older Americans Independence Center NIH/NIA (P30 AG024832).

The authors declare no conflict of interest.

Supplemental digital content is available for this article. Direct URL citation appears in the printed text and is provided in the HTML and PDF versions of this article on the journal's Web site (

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Approximately 48% of individuals with stroke receive rehabilitation in a postacute setting.1 Post–acute care (PAC) can be provided in many different care settings, including inpatient rehabilitation facilities (IRFs), skilled nursing facilities (SNFs), long-term acute care hospitals, home health services, and outpatient offices.2 Stroke survivors (SSs) with activity limitations who receive care in an IRF may achieve better outcomes and fewer complications than those receiving care in an SNF.3,4 The decision about where an individual receives PAC is made in the acute care hospital and is often based on the individual's physical abilities, the severity of the stroke, health insurance coverage, the need to expedite discharge from acute care, and availability of a PAC bed.5–7

In 2015, the Centers for Medicare & Medicaid Services proposed that providers must include patients and their family in discussions regarding PAC discharge planning and the selection of a PAC provider and allow the patient to make the decision.8 The proposal focused on involving patients and caregivers as active partners in postdischarge care to support effective PAC transitions that could improve outcomes, such as reducing readmissions. In addition, the Patient-Centered Outcomes Research Institute promotes shared decision making by involving patients and caregivers in selecting appropriate PAC provider and goal setting.9 Acute care discharge planners indicate that patients and their families may have a more significant influence than clinicians or physicians on discharge decisions.6 While clinicians and case managers report involving patients and their caregivers in rehabilitation decisions,10 the level of involvement from the SSs' perspective is unclear.

Including patients and caregivers in the selection of the PAC setting enables an appropriate discharge location and allows rehabilitation professionals to efficiently engage the patients in developing patient-centered SMART (specific, measurable, attainable, relevant, and time-bound) goals.11 Rehabilitation services could be improved if they utilized patient-centered care to work toward increased autonomy.12 While clinicians report that they provide patient-centered care,13,14 few studies address patients' perceptions of involvement in selecting a PAC provider.15,16 The purpose of this study was to explore SSs' experiences prior to 2015 in PAC to understand both their involvement in choosing their PAC facility (ie, SNF or IRF) and also their experiences while in rehabilitation. Questions specific to their time in rehabilitation included their involvement, inclusion, and satisfaction with rehabilitation goal setting, satisfaction with the stay, and their recommendations to peers related to discharge planning needs.

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The current study analyzed data from interviews conducted for the Patient-Centered Outcomes Research in Elderly (PCOR-E) study. The PCOR-E investigators obtained approval from The University of Texas Medical Branch Institutional Review Board and the Emory University Institutional Review Board approved a reliance agreement for this collaborative research.

Using convenience sampling from the Houston and Galveston, Texas area, we recruited former IRF and SNF patients from support groups, and we recruited former SNF participants from SNFs and retirement living centers. Individuals recruited from support groups resided at home. The participants were SSs, 18 years of age or older, and spoke English. The PCOR-E study had several significant aims: to identify stakeholder's needs related to several aspects of functioning and health care, including mobility limitations, visual impairments, cognitive limitations, discharge planning, and returning to work. For this study, we reviewed only the segments of participants' interviews that focused on their involvement in the selection of their PAC provider, and/or rehabilitation goal setting, and/or their satisfaction with rehabilitation services, and/or their recommendations for peers. This part of the survey required respondents to respond to open-ended questions about an IRF or SNF stay. For this reason, we used an additional inclusion criterion: receipt of PAC in a SNF or an IRF. We excluded 2 participants who had aphasia, because the interviewers were not able to probe their involvement in selecting the PAC discharge planning and involvement in rehabilitation sessions using cue cards. One individual who received rehabilitation in an IRF was excluded because he did not discuss any discharge planning experiences. Three individuals were excluded from this analysis since their time since stroke was beyond 10 years. All enrolled participants provided written consent and were interviewed in-person.

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Research Design

We utilized a qualitative methodology, content analyses for this study to uncover the perspectives of SSs following discharge to in-facility PAC setting following stroke hospitalization. The interviews were conducted to better understand what the SSs experienced when selecting the PAC setting and during the PAC stay.

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Data Collection

Licensed physical (S.K.) and occupational therapists (C.C.H., T.R.)—male and female, with expertise in neurological rehabilitation, PAC discharge planning, and qualitative methodology—conducted the interviews between 2013 and 2015. The interview guide was pilot tested by T.R. on 3 individuals, which resulted in guide modifications. The final semistructured interview included questions about the patient's perceptions of the stroke event and effects of stroke decisions surrounding the selection of the PAC setting, goal setting in rehabilitation, and their most important goals. For PAC selection and PAC rehabilitation experiences, participants were probed on various aspects of their involvement. For example, for participants who mentioned being involved in the PAC selection process, the interviewer followed up with probes such as: Could you explain how you were involved? Were you given options?

The in-person, semistructured, open-ended, interviews were conducted in a location preferred by participants and were approximately 31 minutes long. Because most of the participants were recruited from support groups, we conducted these interviews in a meeting room next to the support group meeting. For the remaining participants, the location was their home or the health care facility where they were residing. The interview began with the interviewers disclosing their role in the study, including their affiliations with the organizations; the interviewers had no prior clinical experience with the participants. All interviews were audio-recorded and transcribed using a professional transcription service. Participants were compensated at study completion for their time with a $25 gift card. To ensure an adequate sample size, we determined “saturation in salience,” where a sample size of about 12 will likely obtain the most salient items/responses.17 Data saturation was reached at the 12th interview.

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Because the interview questions were open-ended, each transcript was reviewed in its entirety to understand SSs' perspectives on their involvement in PAC selection and rehabilitation goal setting. The transcripts were carefully analyzed to ascertain the patients' level of involvement in the selection of the PAC and rehabilitation goal setting.

Two coders (S.K. and C.C.H.) reviewed and analyzed the transcripts independently and inductively and deductively coded the text using line-by-line coding technique and thematic content analysis.18

The data analysis comprised 5 steps. First, 2 reviewers independently reviewed all transcripts and coded 4 interviews. A codebook was developed from the interview topics and additional codes were generated from concepts that emerged from the transcripts (inductive coding). The codebook was refined with new codes as the concepts on PAC selection emerged from subsequent interviews.

In the second stage, the reviewers met to compare their initial codes for agreement of themes and subthemes. The 2 independent reviewers agreed upon 6 overarching categories and created a structured codebook that included involvement in the selection of PAC provider (SSs vs others), satisfaction with PAC selection process, involvement in rehabilitation goal setting, satisfaction with the rehabilitation goal-setting process, recommendation to peers on PAC selection, and discharge planning needs (deductive coding).18,19

Patient involvement in the selection of the PAC setting included 3 codes: not involved, somewhat involved, and involved. Participants who mentioned that someone else made the decision and that they did not know the reason behind the decision were coded as “not involved.” Participants who mentioned that someone came in and discussed the options and explained the benefits of a selected PAC setting were coded as “involved.”

The third stage of analysis involved independently coding the remaining interview transcripts by the same 2 reviewers using the previously identified themes and subthemes.18,19

The fourth step included entering the themes and subthemes into NVivo 10.20 This qualitative software was used to maintain and monitor the coded themes and subthemes systematically. Using NVivo for coding increases the accuracy of coding and makes the quality-checking process efficient.21

The final step was a consensus-based decision-making process to check the agreement of the identified themes and subthemes and resolve any disagreements. In this step, the themes and subthemes along with their associated quotations were reviewed and discussed by the 2 original coders, along with other research team members. The transcripts were compared for the trustworthiness of the themes and subthemes. When disagreements occurred, consensus was sought from all members of the multidisciplinary team, which included expertise in physical therapy (S.K.), occupational therapy (C.H., T.R.), social work (M.P.), rehabilitation nursing (A.D.), qualitative methods (S.K., C.H., M.P., A.D., T.R.), and health services research (S.K., M.P., A.D., T.R.). Consensus coding is one of the most commonly used strategies to resolve disagreements in qualitative coding.22 The team members discussed the pros and cons of the divergent themes to arrive at a consensus. Using a multidisciplinary team should reduce the chance of bias.18,23

The results of the PCOR-E study were discussed in a local stroke support group meeting, which included study participants and their caregivers. In addition, participants were invited to the PCOR-E annual advisory group meeting (a stakeholder engagement lunch) where the results of the project were discussed. The participants shared their thoughts and feedback during these meetings.

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Eighteen community-dwelling SSs who received rehabilitation in either an IRF or an SNF were included in this study (Table 1). Six of the individuals received rehabilitation in an SNF and 12 received rehabilitation in an IRF. The mean ± SD age of participants was 68 ± 14 years. Those in the SNF group were older than those in the IRF group. Most participants were male, and more than half were non-Hispanic white. Time since stroke ranged from 1 to 10 years. Of these, 12 individuals (67%) had experienced stroke within the last 5 years.

Table 1

Table 1

For the purposes of this analysis, the 6 categories have been clustered into 3 primary major themes: (a) patient involvement in PAC discharge planning, (b) patient involvement during rehabilitation goal setting, (c) patient's discharge information needs, and 2 minor themes (a) patient satisfaction with rehabilitation and (b) recommendation to peers. Table 2 lists the distribution of participants across IRFs and SNFs for each theme.

Table 2

Table 2

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Patient Involvement in Selection of PAC Setting

Most of the participants reported that they were not involved in selecting their PAC provider during their acute hospitalization. A participant (61 years, female, Non-Hispanic white SNF) stated, “I don't know. I just ended up here.” Another participant (85 years, female, Non-Hispanic white SNF) mentioned, “I think [the selection of the PAC provider] was really just between the people in rehab and doctor.” A participant (68 years, male, Non-Hispanic white IRF) stated, “Some 12-year-old sitting behind a damn desk at an insurance company made those damn decisions.” Another participant (71 years, female, African American, IRF) mentioned, “Well, [the hospital] picked it.”

Many participants mentioned that someone else was involved in selecting their PAC facility. Six participants stated that their doctors made these decisions. A participant (unknown age, male, African American, IRF) mentioned, “I think it was the doctor concerned because I was transferred from one section to another section.” Another participant (86 years, male, African American, SNF) mentioned, “The doctor took the decision.” Five participants had family members as informal caregivers who were involved in the selection of the PAC provider. One of them (86 years, male, African American, SNF) stated,

I was in there five days then they let me go, and they told me I could go back home. I couldn't go back home by myself so then my daughter, I have three daughters, it wasn't at the house, but they had one [skilled nursing facility] equipped for me. Check it out and see bedrooms and things. Why didn't none of them live with me. They on their own, they don't live with nobody. So anyway, they came looking for a place for me to live, my three daughters. They always do things together.

Three participants mentioned involvement of both their family members and the clinicians. A participant (72 years, male, Non-Hispanic white IRF) mentioned, “They came and asked us all. My daughters were all there. I've got four of them. They were there practically the whole time, off and on. Our youngest one was there. She just stayed there.”

In addition, a participant (68 years, male, Non-Hispanic white IRF) highlighted that the selection of the PAC provider was based on insurance coverage. He mentioned, “The insurance companies, they make all the decisions with no knowledge at all of what goes on. That's the way I feel about it.”

Although a few of the participants mentioned involvement in the selection of the PAC provider, their level of involvement may not demonstrate shared decision making. For instance, a SS (50 years, male, Hispanic, IRF) mentioned, “Yes, I was, cause they asked me if I wanted it, and I said yes.” Another participant (72 years, male, Non-Hispanic white IRF) mentioned,

The doctors made all of the decisions on everything. They told us, they set it up. A representative came from [facility xx] over. They called me and told them they had a patient they need to see in there for rehab. They came over to the hospital in and talked with me. It was pretty well, between me and the doctors, I mean; I could have gone anywhere I wanted to, as long as I went to a therapy place, in-house. That's how I ended up over there.

Most participants were mostly not satisfied with the extent of their involvement in the selection of PAC setting, as a participant (85 years, female, Non-Hispanic white SNF) mentioned, “Well, if I would have known more, then I would have made myself do more ....” However, some participants were satisfied with their destination, as a participant (72 years, male, Non-Hispanic white IRF) mentioned, “I'm very satisfied [with my rehabilitation facility] .... They gave me my whole life back, as far as I'm concerned.”

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Patient Involvement During Rehabilitation Goal Setting

When asked about the process of rehabilitation goal setting, some participants mentioned that they were involved, some mentioned they were not involved, and others did not talk about their involvement during rehabilitation goal setting. A participant (82 years, female, African American, SNF) who was not involved mentioned, “No they just gave me the exercises.” Another (unknown age, male, African American, IRF) mentioned, “I was involved in the doing but I was not involved in the decision-making .... I would like to be [involved] because I knew where my weaknesses were, where they were. I would have loved to.”

Among the participants involved in goal setting, some mentioned that they were asked to contribute only by way of asking questions or raising concerns. For example, a participant (55 years, male, Non-Hispanic white IRF) stated, “The goals are kind of discussed. I'm asked to contribute if I have specific concerns.” While some mentioned that they had the ability to make decisions about rehabilitation plan, a participant mentioned (68 years, male, Non-Hispanic white IRF),

She [therapist] gave me options of what I wanted to do, what I wanted to learn, and I wanted to learn it, and then she made a plan. She actually set down on [a] piece of cardboard and drew up a plan for me. The next time we met, she asked me is that [what] I wanted to do. It was exactly the course I wanted to take. She made me sign it and she stuck to it. It did wonders for me. It did wonders.

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Patient Discharge Information Needs

Many participants revealed the need for specific information during their stay at the acute hospital or PAC before being discharged from the acute hospital or PAC. Table 3 lists the subthemes and relevant quotations on the identified information needs. Stroke survivors expressed the need for information on rehabilitation services, medical interventions such as Botox for spasticity, medications and equipment, and timely diagnosis. They also wanted to know more about their health insurance coverage (services covered by their insurance plan), be educated on what to expect following discharge, learn about the availability of resources such as support groups, and be informed of various psychological changes poststroke such as depression.

Table 3

Table 3

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Patient Satisfaction With Rehabilitation

Most of the participants reported that they were satisfied with their rehabilitation experience (Table 2). A greater proportion of individuals receiving IRF care mentioned being satisfied than those who received SNF care. For instance, a participant (72 years, male, Non-Hispanic white IRF) mentioned, “Those people [therapists] are just great, what they did.” Another participant (44 years, male, African American, IRF) mentioned, “Overall I've been pleased with it.”

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Recommendations to Peers

Most participants were enthusiastic to give recommendations to peers based on their experiences. These recommendations were categorized into 3 major areas: self-motivation, participation in services, and coping strategies. Table 3 lists the subthemes with relevant quotations associated with these major themes. For self-motivation, participants advised their peers to be involved, work as hard as they could, cooperate with their family and therapists, modify their lifestyle to control their blood pressure and improve nutrition, and pay attention to psychological health (eg, depression). They also encouraged other SSs to participate in services, such as rehabilitation and support groups. Under the coping strategy category, participants encouraged other SSs to accept their condition and have hope, faith, and patience.

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This study revealed that most SSs were not involved in selecting their PAC provider prior to 2015. Most SSs perceived their acute care physicians to be most involved in the selection of the PAC provider. Individuals in SNFs were more likely to report that they were not involved in the rehabilitation process, compared with those who underwent rehabilitation in IRFs; however, this difference could be associated with their differences in ages. Older adults usually consider that their physician knows the best approach and may have preferred that approach to themselves engaging in the decision-making process.24 In contrast, another study reported that stroke discharge planners perceive patients and family as more influential than clinicians in selecting the appropriate PAC setting.6 In the current study, half the SSs mentioned that their family was involved in the decision and only a fourth mentioned their own involvement in selecting the PAC setting. The decisions were made in the absence of the SSs partly because they may defer these decisions to their physicians or families.15

Patient-level factors are considered when selecting a PAC setting. For instance, individuals discharged to an IRF should be generally medically stable, need at least 2 modalities of therapy, be able to tolerate 15 hours of therapy per week, demonstrate potential benefit from intensive therapy, and require supervision by a physician.25 Educating the patient/family about these criteria and communicating the benefits and any potential negative aspects of such decisions will promote the involvement of patients in shared decision making during the transition to the appropriate PAC facility.26 Although health care quality measures reports are publicly available, few patients and caregivers use this information to inform their selection of a PAC provider, in part because they may not be able to interpret the information meaningfully.16

Various patient-level factors such as severity of injury, prognosis, age, anticipated length of stay, and family support influence PAC selection.6,27 Clinicians may differ in their perceptions of the prognosis for a stroke patient, as it may be difficult to discern in the early stages which patients will benefit from rehabilitation.5 There is some evidence for the value of considering scores from standardized outcome measures in planning discharge destination (Thorpe et al 2018).28 However, in addition to patient-level factors, facility-level factors such as internal referrals, staffing facility location with respect to the patient's residence, availability of PAC facilities, and the facility's ability to provide services for the patient play an important role in PAC selection.6,27,29 In addition, the PAC may favor admission of patients with less complex needs to minimize the number of patients at risk for poor outcomes.5,30

There was more patient involvement goal setting during rehabilitation compared to selecting PAC setting. In addition, participants revealed that they were mostly satisfied with their overall rehabilitation experience; this finding is consistent with those of a previous study.31 As patients learn about their disease and recovery, they gradually take a more active role in goal setting and treatment planning.32,33

Under the Bundled Payment Care Improvement Initiative, health care providers must be accountable for the quality of care for each patient. Under this initiative, the Centers for Medicare & Medicaid Services reimburses the providers at a target amount for related services (eg, acute care, rehabilitation, readmission) for a particular diagnosis.34 This model would encourage care coordination and the health care facilities could benefit from involving patients in their care early to implement these initiatives successfully. In spite of substantial health care costs, the health care system in the United States does not rank well compared with other countries related to patient satisfaction and health outcomes.35 The United States can benefit from investigating the innovations across other countries such as the United Kingdom and Switzerland and investing in cross-national research.

Stroke survivors expressed the need for information on various factors before being discharged to home. In this study, SSs wanted information about their health insurance coverage, which may have enabled them to have continued therapy. Individuals also expressed the need for information on rehabilitation services following discharge to home. Participants stressed the importance of self-advocacy and various coping strategies. Rebuilding SSs resilience is known to improve both their attitudes and function positively.36 Clinicians must provide appropriate patient-centered information while accounting for the individual's cultural background, language, and functional or communication deficits.10,37

Multiple clinicians are involved in the PAC discharge planning process and may have differing levels of knowledge about PAC discharge planning, depending on their clinical expertise and experiences. In addition, not all physicians involved in discharge planning have the experience to execute a patient-centered plan.38 Having authorized clinicians lead and set standards to share information with patients could standardize this process.39 A “Stroke Navigator” can initiate a postdischarge follow-up and identify and resolve any issues that the patient/family member may have with the transition and connect them to services they need. Physical therapists involved in the patient's treatment are aware of the patient's comorbidities and resources available and can incorporate functional assessment during discharge planning. Increased rates of readmission can be associated with inadequate involvement of physical therapists during discharge planning.40 In addition, involving caregivers would benefit in the care transition process, as they play a significant role in the SSs' care and can identify unique needs.41–43

We acknowledge several study limitations, including that the participants were from 1 geographical location (Texas) of one country (United States). Individuals with aphasia were excluded from our analysis as we were not able to explore their experiences in PAC discharge planning and satisfaction with PAC rehabilitation using cue cards, which limits the generalizability of the results to this population. Only 1 participant with limited English language proficiency, a Spanish speaker, was included in this study. We utilized various recruitment strategies to include a diverse sample. Many individuals with stroke received their PAC outside Houston/Galveston. It is important to further explore age, gender, ethnic, educational, and geographical variations in SSs' involvement in PAC discharge decisions.

The study interview questions were open-ended, and we used standard probes to ascertain the experiences of all SSs on their level of involvement; however, the probes were not all the same. The time since the stroke and PAC varied among participants; therefore, some participants may have had difficulty with recalling information about their involvement. It is important to consider that the participants' cognitive dysfunction (eg, depression and memory) may have affected their responses or their interpretations of their experiences.

To build on the current research, future studies should recruit SSs during discharge or early in their rehabilitation in PAC to understand their level of involvement. Future studies must explore additional strategies to explore experiences of individuals with aphasia and those who speak languages other than English. Including caregivers' perspectives could be beneficial to understanding experiences among individuals with aphasia.

To increase the involvement of patients and caregivers in the selection of a PAC setting, future research should focus on the effectiveness of specific strategies such as motivational interviewing or shared decision-making aids. In addition, there is a need for future studies that explore the impact of shared decision making in PAC discharge planning among SSs/caregivers and their clinicians where the clinicians provide a framework for understanding the rehabilitation quality to help individuals choose a PAC facility that matches their needs.15,16,37 Another area of exploration is the effectiveness of the “Stroke Navigator” role in producing better rehabilitation outcomes, especially among vulnerable populations. Future studies must also explore the influence of caregiver support and involvement on PAC discharge destination. Further, we must consider the impact of cognitive function while assessing patients' experiences with PAC discharge planning. In addition, it is important to explore the participants' personality and beliefs that may influence their memory recall of their involvement in and satisfaction with the discharge planning process.

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Current findings suggest an inadequate involvement of SSs during their PAC discharge planning prior to 2015. Stroke survivors should be involved in selecting the PAC setting and rehabilitation goals during the PAC rehabilitation process. Practicing shared decision making, involving SSs in discussions during PAC discharge planning and providing them options for various PAC facilities, is key to delivering patient-centered care.

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The authors thank Marsja Stearnes and Raul Laureano for their assistance in participant recruitment and Dr Sarah Toombs Smith for editing this manuscript.

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continuity of care; decision making; discharge planning; health services; patient-centered care

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