In 2010, there were approximately 14 million hospital discharges for adults 65 and older (Centers for Disease Control and Prevention, 2012). Evidence has shown that after discharge, older adults report adverse events, illness management difficulties, and quality of life challenges (Forster, Murff, Peterson, Gandhi, & Bates, 2003; Holland, Mistiaen, & Bowles, 2011; Lough, 1996), and 18% to 20% of Medicare beneficiaries are being readmitted to the hospital within 30 days post-discharge (Gerhardt et al., 2013). Recent research shows that receiving care and support after discharge is effective in improving health outcomes and can delay placement in long-term care for older patients, whether received from traditional post-acute care (PAC) settings (e.g., skilled home care, inpatient rehabilitation) or newer transitional care or bridge models (Altfeld et al., 2013; Boling, 2009; Coleman, Parry, Chalmers, & Min, 2006; Feltner et al., 2014; Naylor et al., 1994; Naylor et al., 1999; Naylor et al., 2013; Watkins, Hall, & Kring, 2012).
Recent research has shown that when offered PAC services, many patients refuse to participate in these programs. In a recent study conducted in two large academic medical centers in the Northeastern United States, approximately 30% of hospitalized patients admitted to medical units, who were identified as needing a PAC referral by their care team, refused PAC services (Topaz et al., 2015). Furthermore, these patients had two times higher odds of readmission within 30 days than those who accepted and received services (Topaz et al., 2015).
Little is known about why patients may refuse PAC and, to the current authors' knowledge, there have been no studies that directly ask patients about what information would be beneficial for them to improve their understanding and decision-making ability regarding their PAC needs. Understanding patient information needs represents an important step in improving the quality of communication among the patient, discharge planner, and other members of the health care team (Forster et al., 2003; Horwitz et al., 2013). Targeted information may result in more informed discussions, which may increase the number of patients who accept, receive, and benefit from PAC services.
The aim of the current study was to explore what hospitalized patients want to know about PAC services to make a more informed decision regarding their care post-discharge. Findings may inform the content delivered when clinicians educate patients and caregivers about PAC. The ultimate goal is to improve shared decision-making discussions about PAC to increase the numbers of patients who accept a plan of care that supports their recovery, meets their needs, and results in improved quality of life and fewer readmissions.
A qualitative descriptive study design (Sandelowski, 2000) was selected to help illuminate participants' preferences regarding information they were interested in receiving during hospitalizations related to PAC services and to begin to build a knowledge base on this underexplored topic. Findings reported in the current article are from the qualitative analysis of participant responses to the question, “When discussing options available to you for post-hospital services, what would you like to know about your care and those services to help you make an informed decision?” This question was a part of a larger structured interview used in a qualitative descriptive study conducted by the current authors with the overall aim of gaining a better understanding of patients' knowledge about PAC services and discharge decision making. During individual interviews, research assistants (RAs) limited discussion to the following traditional PAC service options: home care, inpatient rehabilitation, skilled nursing facilities, nursing homes, and hospice. The mean time for the full interview was 46.5 minutes (range = 25 to 115 minutes).
Setting and Participants
The current study was conducted in seven medical–surgical units within a large, urban, academic medical center in the Northeastern United States. Patients were prescreened for study eligibility by a hospital staff member using the electronic health record. Inclusion criteria were: age 55 or older and in need of PAC as determined by the Discharge Decision Support System (D2S2), which is an evidenced-based screening tool that identifies patients upon hospital admission who are likely to need PAC services (Bowles, Chittams, et al., 2014; Bowles, Hanlon, Holland, Potashnik, & Topaz, 2014b). Exclusion criteria were: being cognitively impaired (determined by documentation in the medical record or nurse report), being unable to respond to interview questions, non-English speaking, and on do-not-resuscitate comfort care status. Participants were sampled for variation in gender, age, race, and the hospital unit to which they were admitted (i.e., cardiac, medicine, and surgery).
RAs received a daily report listing patients ages 55 or older and who were identified by the D2S2 as needing a PAC referral. RAs then reviewed inclusion and exclusion criteria with the primary nurse of each potential participant. Thirty participants consented to participate and were interviewed between July 2014 and October 2014.
The current study was approved by the University of Pennsylvania's Institutional Review Board. Prior to data collection, written informed consent was obtained from all participants. Prior to conducting interviews with participants, the four RAs completed qualitative research training, including mock interviews, through the Mixed Methods Research Lab at the University of Pennsylvania. RAs were trained to add specific probes focused on types of PAC services a participant might consider (e.g., home care, inpatient rehabilitation, skilled nursing facility care, nursing home, hospice care) and facilitate and expand on participant responses as needed. Demographic characteristics were obtained directly from participants via a brief survey administered by RAs. Sociodemographic data collected included gender, age, ethnic and racial background, highest level of education completed, insurance type, and self-rated health. RAs also collected primary diagnosis and comorbid conditions (type and number) from the electronic medical record system. Each interview was audiorecorded and transcribed verbatim by an independent professional transcription service. All transcripts were compared to the audio files for accuracy by one author (E.J.F.) and one RA prior to beginning data analysis.
Coding and Data Analysis
The analytical technique for the current study was a conventional content analysis (Hsieh & Shannon, 2005), which involved being immersed in data and reading it word-by-word to derive codes that were exact words capturing key thoughts. Codes are sorted and organized into clusters based on their relationship to one another. Clusters, also referred to as categories, are then organized into themes (Elo & Kyngas, 2007; Graneheim & Lundman, 2003; Hsieh & Shannon, 2005).
Transcripts were uploaded into Atlas.ti version 7, which was housed on a secure research drive. The software was used to store and manage data during the coding process. Three of the authors (J.S.S., R.H.N., E.J.F.) independently completed a first-level coding of all transcripts and met to discuss initial impressions of the data, organize keywords into meaningful clusters, and develop a code book of identified categories and definitions. The full team discussed the code book and made refinements. One author (R.H.N.) completed a second-level coding and another author (J.S.S.) completed an audit of all the coding. Further refinements were made after discussion and the full team met to discuss the themes that emerged.
Three approaches were used to ensure trustworthiness (Lincoln & Guba, 1985). First, a detailed account of initial codes, categories, and final themes was kept, and a code book was developed to account for decisions during ongoing data analysis (audit trail). Second, three separate investigators performed initial data analysis (investigator triangulation), followed by in-depth review and consensus from the entire team regarding final themes and overall study findings. Finally, a process of peer debriefing was facilitated by the Advanced Qualitative Collective, a group of faculty and pre- and postdoctoral students who meet regularly; this group of scholars (who were not associated with the study) engaged in a discussion with the investigators to address challenges and review findings. In addition, findings are described in the current article so readers may make their own conclusions about their transferability.
One half of participants were female, with a mean age of 70 years (range = 55 to 91 years). Twenty (66%) participants were White, non-Hispanic individuals; nine (33%) identified as Black or African American, non-Hispanic individuals; and one (1%) identified as a Black or African American and Hispanic individual. The sample was well educated, with 86.7% of participants having completed a high school education or higher. In addition, 73.3% of participants had Medicare coverage and 76.6% rated their health as fair or poor. On average, participants experienced 7.6 comorbid conditions (range = 3 to 23, SD = 4.4). All patients had different primary diagnoses (the exception was two participants with a diagnosis of sepsis), with 36.7% having a cardiovascular primary diagnosis and 20% having a respiratory primary diagnosis. Additional details related to sociodemographic and clinical characteristics are found in Table 1 and Table 2, respectively.
Sociodemographic Characteristics of the Sample (N = 30)
Medical History of Sample (N = 30)
Three primary themes emerged after analysis of 30 participant responses to: “When discussing options available to you for post hospital services, what would you like to know about your care and those services to help you make an informed decision?” Participants were interested in (a) receiving practical information about the services, (b) understanding “how it relates to me,” and (c) having opportunities to understand PAC options. Although most participants' responses were focused on the three primary themes, four participants responded with “I already know” due to their previous experiences with PAC services; this finding is reported as a secondary theme that emerged from the data.
Practical Information About the Services
Participants were forthcoming in expressing their desire for practical information about potential PAC services so they could make informed decisions. Practical information included cost, extent of the service, quality rating and condition of the facility, and staff qualifications. The upfront financial cost of services, as well as specific information about insurance coverage (i.e., the type, length, and portion of services covered by their insurance plan), were reported as being important. One participant noted that she would want to know if her insurance would cover the cost “because that's the only way I could have the service.” Another participant expressed that despite “pretty good” insurance, it would still be important to know if the service would be associated with any out-of-pocket expenses.
The extent of services available was also of interest. As one participant explained, “I want to know what they're going to do, when they're going to do it, who is going to do it and for how long.” Participants expressed wanting a health care provider to talk with them to give as much information as possible, including pros and cons of the different available services and how long the services are “good for.” Findings regarding home care services focused on participants' interest in specific information, such as the number of days per week and time of day a provider would come to their home, credentials and educational level of those providing care, and specifics about the type of care that would be delivered. One participant explained it is important to know “who is coming in and out of your home. You are sick there and maybe everybody is out for the day or something.... I've got to get to know people before I let them come in my house like that nowadays.”
For services other than home care (specifically inpatient rehabilitation, skilled nursing facility care, nursing home placement, and hospice), the current findings showed that participants were interested in knowing more about facilities' reputations for quality of care provided and service ratings. In addition, when participants considered placement in PAC services, they expressed an interest in the logistics of how a particular facility operates and how facility policies may impact them or their loved ones (e.g., visiting hours).
“How it Relates to Me”
The theme how it relates to me included participants wanting information about the service expectations of them if enrolled, personal benefits they would receive, and how the services related to their own condition. Patients wanted to know what might be expected of them, including physically, if they chose a certain PAC service. For example, one participant said she would want to know expectations in terms of “the dos and the do nots [and] the cans and can nots.” Participants expressed a desire to have information tailored to them so that they would be able to determine personal benefits of receiving PAC services. One participant asked, “How is it [receiving a service] going to make my life easier?” Furthermore, participants wanted to know more about their health condition and how a PAC service would specifically pertain to “my condition.” One participant asked:
How is it going to benefit me as far as making me better from where I am right now? The ailment that I am at, or whatever, what can you explain to me that is going to make me, make it better for me?
Opportunities to Understand Options
This theme included receiving clear information, verbally and written, about services and having the ability to gather more information. Receiving clear information about services from providers was particularly important for participants who did not have any prior experience with PAC services because they “don't know too much” about the services available. One participant explained that patients should be given clear information about PAC options because without prior knowledge about services they do not know what questions to ask providers.
In addition to receiving information in the hospital from providers about PAC options, participants also described wanting to gather their own information before making PAC decisions. For example, some reported an interest in conducting their own research online and reading more about facilities or services that might be considered for PAC. One participant noted that she wanted to gather more information by “talking to other people that maybe went to the same place. Usually it's better word by mouth instead of reading something...or experiencing it yourself.” Other participants also expressed an interest in visiting potential facilities to observe the environment and have the ability to ask staff questions before making a decision.
“I Already Know”
Responses from four participants fell outside the three primary themes and were coded as I already know. For example, one participant responded to the interview question by saying, “Nothing, because I already know the services.” Another participant explained, “I know just about everything. I mean, I had diabetes for like over 30 years. So I know a lot of stuff.”
The current study investigated the type of information hospitalized patients would like to know regarding PAC service options during their hospitalization by directly asking participants their opinions and ideas on this topic. The goal was to begin to build a knowledge base as well as provide discharge planners, case managers, and other providers with the type of information patients stated they wanted to make more informed decisions about PAC services. The findings showed that participants were interested in (a) receiving practical information about the services, (b) understanding “how it relates to me,” and (c) having opportunities to understand PAC options.
Many study participants expressed the need to know basic, practical information about PAC services, such as out-of-pocket costs, types of services provided, schedules of services, and facility ratings and rankings. Similar findings have been reported by Alexander, Casalino, and Meltzer (2003), in which 63% of participants expressed a desire to discuss out-of-pocket costs. However, only 15% of participants actually reported having such conversations with their providers (Alexander et al., 2003). PAC facility rankings, services, and quality information are readily available, but only for nursing home and home health care. The Centers for Medicare and Medicaid Services (CMS; 2015a,b) manage PAC comparison websites that provide consumer-oriented information in the form of standardized, risk-adjusted quality report cards. These websites, which are regularly updated and based on national datasets, represent the most comprehensive tools provided by CMS to aid patients and discharge planners in choosing a PAC service. Nevertheless, Castle (2009) found that although 63% of discharge planners were aware of this widely available resource, only 38% actually used it.
Participants in the current study preferred PAC information tailored to their specific needs and conditions. Tailored information contributes to patients' positive personal experiences in health transitions and decision making (Giosa, Stolee, Dupuis, Mock, & Santi, 2014; Gladden, 2000). Information related to PAC options should be patient-centered and based on evidence, explaining how services will impact recovery or adaption to patients' specific needs. For example, a comprehensive needs assessment during hospitalization may improve identification of relevant PAC services by providing a framework for tailoring information to patients' needs (Graham, Ivey, & Neuhauser, 2009; Low et al., 2015). A tailored description of skilled services provided may then help patients see that services such as complex medication management, wound care, and physical therapy are beyond what they are prepared to perform for themselves or what their caregivers are able to perform for them immediately following hospital discharge.
Past research supports the importance of providing patient-centered care across transitions in health care settings (Enderlin et al., 2013; Giosa et al., 2014). Patient-centered models for discharge planning may reduce rehospitalization and health care costs (Altfeld et al., 2013; Coleman, Min, Chomiak, & Kramer, 2004; Feltner et al., 2014; Naylor et al., 1994; Watkins et al., 2012). These models typically involve time-limited patient follow up after discharge, nurses or other individuals familiar with PAC services to facilitate navigation through the transition process, and communication and collaboration among providers and patients or caregivers across care transitions (Enderlin et al., 2013). Thus, these models exemplify consistent and personalized information exchange between providers and patients to enhance adaptive planning for patient-centered care.
Participants also have a need to understand their specific responsibilities while enrolled in a PAC service. A lack of clarity in patient roles in key aspects of PAC services may exist during conversations related to PAC services (Gladden, 2000; Toscan, Mairs, Hinton, & Stolee, 2012). Clear information regarding specific roles and rights of patients in PAC services may increase a patient's sense of empowerment and collaborative decision making (Toscan et al., 2012). Although participants did not discuss caregivers, the roles of caregivers, family members, or other individuals in their social support network should also be explained (Toscan et al., 2012).
The current findings demonstrate that patients want to receive clear information from providers and discharge planners. Presenting clear information may involve adapting delivery strategies to patients' needs. For example, limited levels of health literacy may impact receipt of clear information related to PAC services (Horwitz et al., 2013). An assessment of preferred learning strategies and provision of different options for information delivery (e.g., verbal or written instruction, video or interactive methods) may enhance the receipt of clear information for patients (Chugh, Williams, Grigsby, & Coleman, 2009). Furthermore, incorporating patients and caregivers early in the discharge planning process may increase the number of opportunities to hear and assimilate clear information on PAC options.
In addition to receiving clear information from providers and discharge planners, participants discussed using alternative sources of information (e.g., online resources) to conduct their own research on PAC services. Older adults who use Internet and e-mail services most often use these tools to research health-related information (Keenan, 2009; Zickuhr & Madden, 2012). Therefore, providers and case managers may consider using Internet platforms to share information with patients or providing links to resources that patients may use to gather more information about services.
Participants also expressed interest in talking to others who have had PAC services and visiting a facility prior to making a decision. Although patients and caregivers or family members need adequate time to gather information from these alternative sources, approximately 30% of patients receive <1 day of notice before discharge (Horwitz et al., 2013). Having time to educate, gather information, and participate in shared decision making takes time, and with 85% of older adults wanting either a collaborative or an active role in discharge planning decision making, efficient approaches are needed (Popejoy, 2011). Discussions related to PAC options should begin in the outpatient setting, with providers encouraging patients to explore preferences and gather information related to PAC services prior to an actual acute event or planned admission. Hospital systems may use their volunteer workforce by pairing patients with questions to volunteers who experienced a PAC service. Moreover, decision support interventions, such as the D2S2, may help identify and alert case managers upon admission as to which patients are likely to need PAC to begin discharge planning processes and discussions early (Bowles, Chittams, et al., 2014; Bowles, Hanlon, et al., 2014).
In the current study, some participants were already familiar with PAC services. In these cases, patients must integrate prior knowledge with their current situation and with new information provided during discharge planning. Asking patients about prior experiences and knowledge related to PAC could improve tailoring of content, identifying misperceptions, confirming knowledge, and sharing information among clinicians, case managers, and these patients.
Although rigorous qualitative methods were applied throughout the study, participants were from a convenience sample who were hospitalized and identified as likely needing PAC services in one academic medical center in the Northeastern United States and were all English speaking. A majority of participants had at least a high school education. Study strengths included a diverse age range of participants of different races, who had multiple comorbid conditions often seen in the clinical setting. Results are limited to the answers from one focused question about patients' information needs, and the probes used by four different RAs to elicit detail may have varied.
The current findings suggest patients need and want tailored information related to PAC services that focuses on their needs and conditions. Strategies to tailor PAC service information to patients' specific needs and conditions require engagement of patients and caregivers in shared dialogue. Clarifying patient and caregiver roles in PAC services; assessing patient knowledge, experiences, and preferred learning strategies related to PAC; and delivering tailored information are potential effective engagement strategies. In addition, discharge planning discussions should occur early in the hospital stay to allow time for productive dialogue and information gathering.
Future research should build on the current study, and may explore and compare diverse strategies for knowledge acquisition about PAC services among a heterogeneous sample of older adults and their caregivers. Moreover, studies are also needed to (a) examine older adults' use of the Internet or web-based interactive programs for PAC service information, (b) explore reasons why patients refuse PAC, (c) develop new interventions to elicit patient preferences at the bedside, and (d) evaluate the impact of supported decision making on PAC referral acceptance rates and patient outcomes (e.g., readmission).
The current qualitative descriptive study has laid the groundwork for building knowledge related to the type of information patients want to make a more informed decision for selecting a PAC services. Participants were interested in receiving practical information about the services, understanding “how it relates to me,” and having opportunities to understand PAC options. The findings may assist clinicians in directing conversations regarding PAC services and hopefully increase patients' understanding of what is being offered and the benefits to their care.
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Sociodemographic Characteristics of the Sample (N = 30)
| 55 to 64||8 (26.7)|
| 65 to 74||14 (46.7)|
| 75 to 84||4 (13.3)|
| ≥85||4 (13.3)|
| Mean (SD), range||70 (9.9), 55 to 91|
| Not Hispanic or Latino||29 (96.7)|
| White||20 (66.7)|
| Black or African American||10 (33.3)|
| Grades 5 to 8||1 (3.3)|
| High school (incomplete)||3 (10)|
| High school (complete)||5 (16.7)|
| Post-high school/business or trade school||2 (6.7)|
| 1 to 3 years of college||9 (30)|
| College (complete)||6 (20)|
| Post-graduate college||4 (13.3)|
| Medicare||22 (73.3)|
| Private pay||15 (50)|
| Other||6 (20)|
| Medicaid||5 (16.7)|
|How would you rate your health at the present time?|
| Excellent||2 (6.7)|
| Good||5 (16.7)|
| Fair||16 (53.3)|
| Poor||7 (23.3)|
Medical History of Sample (N = 30)
| Cardiovascular||11 (36.7)|
| Other||9 (30)|
| Respiratory||6 (20)|
| Sepsis||2 (6.7)|
| Vascular||2 (6.7)|
|No. of comorbid conditions|
| <5||5 (16.7)|
| 5 to 10||19 (63.3)|
| 11 to 15||4 (13.3)|
| >15||2 (6.7)|
| Mean (SD), range||7.6 (4.4), 3 to 23|