Transforming the discharge conversation through support and structure: A scoping review

Abstract

Background

System level demands and interpersonal barriers can disrupt nurse delivery of high-quality information at discharge, which can contribute to a lack of caregiver preparedness to manage care of the patient and ultimately affect patient health.

Objective

To synthesize evidence on effective nurse communication with informal caregivers during hospital discharge of adult patients with cognitive decline or Alzheimer's disease and related dementia.

Design

A scoping review of inpatient nurse communication with informal caregivers.

Methods

Collected research (published between 2011 and 2023) from three databases (MEDLINE, PsycINFO, and CINAHL), along with a separate search for gray literature (N = 18), to extract and synthesize recommended communication practices evidenced to improve the nurse care experience and support caregiver activation and preparedness.

Results

Extraction synthesis of strategies resulted in two themes with corresponding sub-themes: Support (Information exchange, Space and time to determine preparedness, and Positive reinforcement of caregiver efforts) and Structure (Setting shared expectations, Informational resources, and Standardization).

Conclusions

We offer practical recommendations for both interpersonal and policy level facilitation of nurse delivery of high-quality information at discharge to caregivers of patients with serious illness.

What is already known about this topic.

• •Nurse communication with caregivers at discharge can improve their preparedness to manage patients and promote nurse professional fulfillment.
• •System-level demands often present barriers for effective discharge conversations and contribute to nurse burnout.

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What this paper adds.

• •We identified features of interpersonal communication that enhance nurse delivery of high-quality information to caregivers at discharge.
• •Feasible structural changes in admission and discharge processes can minimize systemic barriers, enabling more effective discharge conversations.

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1. Background

Nurse delivery of high-quality information to caregivers—the necessary medical information to promote maintenance and recovery—is critical for care of the patient following discharge from the hospital. Hospital discharge refers to the process of releasing a patient following a procedure or treatment and often involves the review of a discharge plan that provides instructions for ongoing patient care, including medications and rehabilitation (An, 2015; Gonçalves-Bradley et al., 2016). If a patient is unable to care for themselves following discharge, caregivers are recipients of the discharge plan and expected to provide ongoing patient care (Rodakowski et al., 2017). This is especially true for caregivers of older adults with serious illness—a health condition that presents greater risk for mortality, can negatively impact daily functioning or quality of life, or requires substantial involvement from caregivers (Kelley and Lund, 2018). Among this group are patients with cognitive decline, such as Alzheimer's disease and related dementias, where 80 % of patients require caregiver support (CDC, 2023). Caregivers play a substantial, but often undervalued role in the health care system. As of 2014 there were a reported 18 million informal caregivers in the United States (US) (Spillman et al., 2014), a number which is increasing with the aging of the “baby boom” generation (AARP, 2020). For older adults with serious illness like Alzheimer's disease and related dementias, caregivers are often the direct point of contact for providers. To ensure awareness of a patient's health status, providers collaborate with caregivers by confirming understanding of directions for medical treatment and may rely on caregivers to make decisions on behalf of the patient if the patient is deemed cognitively impaired (Hagedoorn et al., 2020; Sawan et al., 2021).

Previous researchers have found that caregivers report better preparedness when they are offered more involvement in the coordination of care, as partners in the patient care experience (Hagedoorn et al., 2020; Liebzeit et al., 2023). Based on the seminal work of Archbold et al. (1990), preparedness refers to the extent to which caregivers believe themselves ready for the tasks and stressors of the caregiving role. Greater coordination with caregivers can lead to higher levels of preparedness (Hagedoorn et al., 2020), reduced anxiety (Burgstaller et al., 2018), and greater self-efficacy in their ability to manage patient care (Merrilees et al., 2018). Unfortunately, a lack of actual and perceived preparedness can be detrimental to both caregiver and patient. Informal caregivers frequently report a lack of preparedness to address patients’ medical needs (Hagedoorn et al., 2020), potentially contributing to caregiver burden, subsequent patient hospitalizations, or admission to a long-term care facility (Bailes et al., 2016; Cheng et al., 2022; Towle et al., 2020), and, in more severe cases, may result in patient mortality (Schulz et al., 2021).

Fortunately, informal caregivers experience a reduction in stress and burden and an increase in caring ability when nurses incorporate care models that foster caregiver activation by instructing caregivers on how to treat the patient and, at the same time, recognize the caregiver's need for physical, psychosocial, and environmental support (Meyer et al., 2022). The communicative exchange between informal caregivers and nurses has been shown to reduce depressive symptoms and facilitate improved caregiver physical and emotional coping strategies (Steffen et al., 2019). Nurses can optimize care by tailoring messages to the informal caregiver's specific needs, such as recommending support groups, case management, and the availability of respite care (Bleijlevens et al., 2015). In acute inpatient care, nurses can play an important role in fostering caregiver activation and preparedness. Researchers suggest that the perceived ability to manage the medical needs of the patient post-discharge can act as a protective factor against the stressors affiliated with caregiving, which can ultimately benefit patient health (Merrilees et al., 2018; Meyer et al., 2022; Steffen et al., 2019).

In the inpatient setting, nurses typically spend more time with the patient and caregiver than any other healthcare provider. Nurses are also largely responsible for the delivery of discharge information to caregivers. Unfortunately, due to systemic and organizational factors, time spent interacting with caregivers is decreasing (Kwame and Petrucka, 2021). In addition to the increasing professional demands at the bedside, nurses often struggle to deliver high-quality information to caregivers due to a lack of communication training, greater workloads, and fewer support resources for managing care (Kang and Hur, 2021). Nurses are increasingly reporting experiences of burnout and compassion fatigue, which has been linked to a reduction in the quality of care provided (Chan et al., 2019; Dyrbye et al., 2017). Researchers found that amidst these demands, features of communication can work to enhance the delivery of high-quality information and support of the caregiver, which can positively impact nurse outcomes related to burnout and professional satisfaction (Darban et al., 2016). For example, reviewing a patient's social history or sitting down to deliver information (Ferrell et al., 2019; Solli et al., 2015) is associated with reduced medical errors, fewer nurse turnover rates, and higher morale (Deeks et al., 2016; Khrone, 2022; Urashima et al., 2021). Therefore, creating opportunities for nurses to engage in interpersonal communication with caregivers will likely improve nurse care experiences and caregiver activation and preparedness, thereby improving patient care. Despite the evidence highlighting the ways to and the need for enhancing nurse delivery of high-quality information with caregivers at discharge, a comprehensive synthesis of best practices does not exist.

To address this need, a scoping review was used to explore evidence of effective nurse communication with caregivers during hospital discharge of older adult patients with cognitive decline or Alzheimer's disease and related dementias to identify strategies for enhancing nurse delivery of high-quality information to caregivers.

2. Methods

Scoping reviews aim to synthesize evidence and assess the scope of literature on a topic (Tricco et al., 2018). Due to the distinctive nature and range of study designs and measures examining discharge conversations, the scoping review approach affords a comprehensive summary of existing research. Three databases were chosen (Medline, PsycInfo, CINHAL) for the search due to their applicability to the study area. An initial search was conducted in 2021 to locate research over the past 10 years (2011–2021). During the synthesis process, a subsequent search was conducted (2021–2023) to locate any additional applicable articles.

2.1. Study selection

Inclusion criteria required that articles include inpatient nurses and informal caregivers in the context of patients with cognitive decline or Alzheimer's disease and related dementias aged 65 years or older. For extraction purposes, we also ensured all articles included an interpersonal communication intervention where communication was observed or perceived, along with outcomes related to nurse professional fulfillment and caregiver activation or preparedness. Articles published in any language were accepted, and Google Translate was used to convert articles into English (if no English version was available) (Jackson et al., 2019). Articles that included interventions involving technology or communication exchanged after discharge were excluded, along with pediatric studies, at-home care/home health settings, and those that were fewer than three pages to limit extended abstracts or incomplete published trials.

Three research librarians (G.B., J.D., E.C.) assisted in developing search term criteria, including determination of keywords and MeSH terms applicable to each database (see Search Terms in Supplementary Materials 1). All articles identified through the initial search were uploaded into the systematic review tool Covidence (Veritas Health Innovation Ltd., Melbourne 2018). The tool automatically filters duplicates and tracks article reviews. Once articles were uploaded into Covidence, articles were flagged for duplication and removed. Additional gray literature was identified through general searches outside the selected databases and added to Covidence for review. Due to the limited number of studies focused on the interpersonal exchange between nurses and caregivers during hospital discharge, the inclusion of gray literature increased the comprehensiveness and scope of available research (Paez, 2017). The PRISMA for scoping review screening process was followed (see Supplementary Materials 2 for PRISMA chart 2021–2021). Four members of the research team (A.J., V.J., G.D., M.H.) independently reviewed the title/abstract and full-text articles. Reviewers included two undergraduate research assistants with backgrounds in communication studies and public health, a Doctor of Nursing Practice candidate, and a health communication scholar. Each article was reviewed twice, and instances of reviewer discrepancy resulted in a third review. A quality assessment of the articles was conducted to validate synthesis results (Pollock et al., 2022; Yosep et al., 2023). Informed by the Critical Appraisal Skills Programme tool, which accounts for literature involving qualitative research methods, no studies were excluded due to low quality (CASP, 2018). A second literature search for articles from 2021 to 2023 followed the same procedures. All identified eligible articles were already included in the initial search. Therefore, no additional articles were added (see Supplementary Materials 2 for PRISMA chart 2021–2023).

2.2. Data synthesis and analysis

For each included study, two members of the research team (A.J., G.D.), in consultation with a third member (M.H.), extracted study author(s) and year, study design, objectives, intervention description, and main findings according to nurse and caregiver outcomes (see Table 1 for extraction summary). The main findings were further analyzed to extract features of communication recognized as enhancing the delivery of high-quality information during discharge conversations, thereby promoting nurse professional fulfillment outcomes or supporting caregiver activation and preparedness. To further refine findings and provide clearer recommendations for enhancing the hospital discharge experience for nurses and caregivers, what Arksey and O'Malley refer to as ‘charting the data’, a thematic analysis was conducted (Arksey and O'Malley, 2005, p. 15; Ma et al., 2023). In reviewing extracted communication features and corresponding outcomes (when applicable), we identified two dominant themes: Support and Structure. Within each of these themes, several sub-themes were identified.

Table 1.

Extraction.

Study	Country	Study design	Serious Illness	Communication Content Focus	Key Findings
Agarwal et al. 2020	United States	Cohort study	Heart failure and cognitive impairment	Determined whether caregiver involvement in nursing discharge education and patient heart failure severity impacted readmission rates among older adults with cognitive impairment.	Patients experiencing heart failure and cognitive impairment had a reduction in 30-day readmission rates following nurse engagement of caregivers in discharge education.
Bauer et al. 2011	Australia	Interviews	Dementia	Considered practices for improving hospital discharge to support family caregivers of people with dementia.	The expectations and needs of family caregivers during hospital discharge pertained to coordination, capability, and consultation.
Bloomer et al. 2016	Australia	Interviews	Dementia	Explored caregiver perspectives of inpatient experiences among people with dementia to become familiar with the navigation of patient hospitalization, rehabilitation, and the transition to residential care.	Caregivers expressed the need for improving interpersonal communication with healthcare professionals. Caregivers experienced various conflicts communicating with care team members and often felt overwhelmed and lost when making life and death decisions.
Boltz et al. 2021	United States	Descriptive Analysis	Dementia	Examined the return to baseline physical function as well as delirium severity among individuals living with dementia following hospital function-focused goals conversation with caregivers at discharge.	Persons with dementia demonstrated improved functional outcomes and experienced less delirium when function-focused goals were discussed with their caregivers at discharge.
Çelik and Bilik 2020	Turkey	Interviews	Hip fracture surgery patients with Alzheimer's disease	Evaluated needs among caregivers following the discharge of cognitively impaired patients who underwent hip fracture surgery.	Caregivers expressed a lack of preparedness and confidence in their ability to care for various aspects of patient health, including home care resources, nutrition, mobility, and medical device usage. Lack of preparedness was attributed to poor or missing information from nurses and related healthcare professionals.
Cesta 2014	United States	Perspective	Patients with physical or behavior health problems, predominantly dementia or Alzheimer's disease	Reviewed the role of family caregivers and the relationship between family caregivers and health care professionals, particularly in the context of discharge conversations.	Understanding the issues that can arise as a caregiver helped to determine caregiver's availability and capacity to manage patient needs. Hospital staff discussion of patient needs and care plan with caregivers ensured that caregivers made proper decisions surrounding patient care and could identify the potential triggers for readmission in order to avoid them in the future. Hospital staff evaluations of caregivers also facilitated plans for potential respite needs of caregivers.
Chenoweth et al. 2021	Australia	Interviews	Dementia	Obtained perceptions of care quality among people with dementia and their family caregivers during hospitalization.	It was discovered that when healthcare staff provided empathetic care and attention through interpersonal exchanges, education, training, and protocol adherence, patients felt safer, and caregivers felt more at peace.
Fitzgerald et al. 2011	Australia	Interviews	Dementia	Explored rural and metropolitan hospitals to understand experiences of family caregivers of patients with dementia to determine whether needs were being met through hospital discharge processes.	Caregivers expressed feeling unprepared, ‘not heard’, and undervalued. They identified that there were instances of inadequate communication and planning processes with nurses and hospital staff.
Gwernan-Jones et al. 2020	United Kingdom	Systematic Review	Dementia	Systematically reviewed and synthesized qualitative data that evaluated hospital staff experiences when caring for people with dementia.	The hospital experience during the discharge process had an impact on caregiver and people with dementia as they transitioned from hospital to home. When hospital staff felt unappreciated, they were less satisfied with their role and had lower self-worth, which affected the quality of care provided. Hospital staff were encouraged to aim for routine- or task-based care due to the challenges of caring for patients with dementia, which risked support for psychological well-being among patients with dementia.
Jamieson et al. 2016	Australia	Interviews	Dementia	Investigated the transition process for people with dementia and their caregivers as they transitioned from hospital to home.	Caregivers encouraged healthcare members to recognize and acknowledge caregiver expertise and involvement in patient care. Promoting patient-centered care improved care outcomes due to the established relationship between caregivers and hospital staff. Caregivers felt included in discussions at the point of discharge, and they were reassured of their importance. These components prompted a smooth transition process.
Kelley et al. 2019	United Kingdom	Qualitative Ethnographic Study	Dementia	Analyzed the impact of family involvement in hospital care for people living with dementia.	It was found that the knowledge, expertise, and involvement of family caregivers improved patient-centered care. The caregiver's ability to provide information on how to communicate with the patient allowed staff to properly identify and attend to the patient's specific needs, such as when they were feeling unwell or needed more support. In addition, caregiver knowledge supported staff engagement with patient activities. Caregivers who lacked sufficient knowledge of the patient provided limited assistance and improvements.
Mockford 2015	United Kingdom	Narrative Analysis	Dementia	A rapid review of literature focused on exploring the issues surrounding the departure of patients with dementia from the hospital, and the experiences of their caregivers during the discharge process.	Improvement in coordination and consultation were necessary to support caregivers of persons living with dementia. Caregivers did not feel they had enough time to grasp information during critical discussions with healthcare members. They also felt undervalued in their role, which contributed to higher rates of exhaustion and despair during hospital discharge.
Mockford et al. 2016	United Kingdom	Interviews	Memory loss or Dementia	Identified recommendations for families transitioning persons living with memory loss from a hospital to a communal environment.	During the transition process, hardships were experienced by family caregivers. Caregivers were often not involved in the discharge planning process, leading to confusion of post-discharge plans and a lack of understanding of their caregiving role. Health care members were hesitant to develop discharge statements due to increased workload and the potential for misinformation across health care and social care electronic systems.
Prusaczyk et al. 2019	United States	Qualitative Content Analysis	Dementia	Analyzed the experiences and admission processes of older adults transitioning to or from the hospital, with and without a dementia diagnosis.	Observed differences were found in the transition to and from hospital care among patients with and without dementia. Patients with a dementia diagnosis experienced higher rates of inaccurate medication histories and were provided with less follow-up education concerning their post-discharge medication routines, symptoms, and point-of contact.
Sawan et al. 2021	Australia	Interviews	Dementia	Evaluated the guidance provided to caregivers during hospital discharge for medication management.	The guidance provided on medication management varied between caregivers. Many caregivers received no information and those who did experienced brief conversations. Caregivers that received information noted three types of communication styles: a brief discharge summary, list of medications with no specificity, and limited elaboration from a care team member without review of risks and benefits of the medication. Caregivers also perceived limited effort among care team members in addressing concerns of the adverse effects of medication.
Sagbakken et al. 2020	United Kingdom	Interviews and Focus Groups	Dementia	Aimed to gather perspectives of persons with dementia, their caregivers, and health care team members, of the cultural limitations and hardships experienced during the discharge process when patients and caregivers have immigrant backgrounds.	Challenges were found between healthcare members and family caregivers regarding language and cultural barriers. Recommendations focused on adjusting food preparation and incorporating music, literature, or TV programs representative of the patient's background, to invite a sense of belongingness. These efforts adapted and promoted approaches to patient care.
Stockwell-Smith et al. 2017	Australia	Literature Review	Dementia	Explored limitations to involvement in the hospital discharge process for family caregivers and persons living with dementia.	Prevention of post-discharge functional and cognitive decline among patients was found through engagement of caregivers in the discharge process. Patient and caregiver journaling of their hospital experience and establishing family meetings at the beginning of admission—specifically on risks and risk aversions—facilitated family engagement and discharge decision-making.
Whittamore et al. 2014	United Kingdom	Randomized Controlled Trial Secondary Analysis	Cognitive impairment and dementia	Evaluated dissatisfaction of hospital care from the perspective of caregivers for older adults with cognitive impairment.	Evaluation results determined that the dissatisfaction rate among caregivers was 54 %, whereas 87 % were mostly or completely satisfied with care. Dissatisfaction related to caregivers’ experiences of inadequate communication with ward staff. Caregiver strain or poor psychological health was related to patients’ behavioral and psychological symptoms during admission. Caregivers were present for brief periods during the hospital stay, and patients were usually unable to recall their care experience. Hospital staff were trained in general dementia awareness but there were no benefits discovered from additional staffing, training, environment leadership, or changes in hospital culture.

3. Results

Using the criteria above, 163 articles were elicited, plus an additional 5 identified through gray literature, resulting in a total of 148 articles after removing duplicates. Two studies required translation (from German and traditional Chinese). After translation, both articles did not meet eligibility criteria and were excluded. Following title and abstract screening, 49 articles were moved to full-text screening. Among those articles, 31 were excluded based on inclusion and exclusion criteria, leaving 18 articles for synthesis. Quality assessment determined all research article procedures to be valid, impactful, and rigorous. Among the studies included, 12 involved qualitative methods, two were literature reviews, two used quantitative methods, one was a cohort-based study, and one was a clinical expert perspective piece. Following synthesis of 18 articles, extracting features of communication that work to enhance nurse delivery of high-quality information during discharge conversations, two overarching themes were identified: Support and Structure. Each overarching theme included three sub-themes. Sub-themes for Support included Information exchange, Space and time to determine preparedness, and Positive reinforcement. For Structure, sub-themes included Setting shared expectations, Informational resources, and Standardization.

3.1. Support

Many of the studies emphasized interpersonal communication emblematic of support that enabled caregiver activation and preparedness. Features of interpersonal communication included, sitting with the caregiver during the review of discharge paperwork (Agarwal et al., 2020; Bauer et al., 2011; Bloomer et al., 2016; Boltz et al., 2021; Çelik and Bilik, 2020; Cesta, 2014; Chenoweth et al., 2021; Fitzgerald et al., 2011; Gwernan-Jones et al., 2020; Jamieson et al., 2016; Kelley et al., 2019; Mockford, 2015; Mockford et al., 2016; Prusaczyk et al., 2019; Sagbakken et al., 2020; Sawan et al., 2021; Stockwell-Smith et al., 2017; Whittamore et al., 2014), encouraging caregivers to ask questions and relay information (Boltz et al., 2021; Jamieson et al., 2016; Mockford, 2015; Mockford et al., 2016; Sawan et al., 2021), check-in with caregiver to confirm readiness and comfort with role and accompanying responsibilities (Çelik and Bilik, 2020; Kelley et al., 2019; Ownsworth et al., 2020), offering tangible informational resources according to the needs of both patient and caregiver (Bauer et al., 2011; Cesta, 2014; Chenoweth et al., 2021; Fitzgerald et al., 2011; Sagbakken et al., 2020; Whittamore et al., 2014), and extending words of encouragement, including acknowledgement of their role as caregiver and a respected member of the care team (Cesta, 2014; Gwernan-Jones et al., 2020; Jamieson et al., 2016).

Information exchange refers to the process of actively gathering information from and relaying information to caregivers with the goal of personalizing care to the specific needs of the caregiver and patient. Researchers have found multiple examples of communication techniques that promote information exchange (Bauer et la., 2011; Boltz et al., 2021; Çelik and Bilik, 2020; Cesta, 2014; Jamieson et al., 2016; Kelley et al. 2019; Mockford, 2015; Sagbakken et al., 2020). Mockford et al. (2016) noted the importance of increasing medical staff knowledge of the role of the caregiver and incorporating caregiver consultations in patient care planning to be more inclusive of the caregiver role. They found that when caregivers were not included in discharge planning, there was greater confusion on behalf of the caregiver concerning patient care management. Sagbakken et al. (2020) emphasized the importance of confirming cultural considerations of the patient and caregiver that may impact care. This might include a discussion about socio-cultural needs in support of culturally-congruent care or gathering caregiver narratives of perceptions of family that could inform approaches to health and wellness, which would help to determine recommendations for care following discharge. These considerations can improve the care experience and potentially minimize costs of care by creating space to determine preferences for care, including beliefs behind life-prolonging treatments.

Space and time to determine preparedness included strategies to enable the time and safe environment for caregivers to absorb information and be emotional as they engage with the information delivered (Çelik and Bilik, 2020; Cesta, 2014; Chenoweth et al., 2021; Fitzgerald et al., 2011; Jamieson et al., 2016; Mockford et al., 2016; Sagbakken et al., 2020; Sawan et al., 2021). Cesta (2014) recommended providing caregivers with a basic understanding of the admission to discharge process and granting caregivers an opportunity to ask questions. Readiness to receive information was a key aspect of information delivery and patient care. Determining the caregiver's perceived availability to manage patient care and willingness to address new care concerns ensured that the care team and caregiver could make a realistic choice about ongoing care of the patient and avoid patient readmission. Part of this included coordinating with the caregiver to ensure they have the time to receive and process all necessary information. Chenoweth et al. (2021) proposed establishing a member of the care team to have regular consultations with the caregiver, which was found to increase perceptions of staff empathy and greater feelings of safety and peace of mind among caregivers. In another study, Bloomer et al. (2016) suggested a step-by-step council of immediate health decisions between health professionals and caregivers to minimize interpersonal conflicts with the patient's larger care network and to reduce a perceived loss of control due to acute medical demands. Fitzgerald et al. (2011) encouraged nurses to inquire about the caregiver's anticipated experience of transitioning from hospital to home to better understand caregiver needs and avoid perceptions of being unprepared or inadequate discharge planning. Sagbakken et al. (2020) noted the importance of allocating time to include interpreters when caregivers (and patients) are from a linguistic or cultural background different from that of the care team.

Positive reinforcement of caregiver efforts was also identified as essential to the information delivery process (Bauer et al., 2011; Gwernan-Jones et al., 2020; Kelley et al., 2019; Sawan et al., 2021). Examples of positive reinforcement included praising caregivers for their involvement in patient care, celebrating effective care management prior to admission, and inclusion of caregivers as a member of the care team. Sawan et al. (2021) emphasized the importance of recognizing caregivers as patient experts throughout the admission and discharge process, noting that caregivers often reported receiving minimal acknowledgement, with conversations being too brief and predominantly focused on medications. In another example, Chenoweth et al. (2021) found that identification of the principal family caregiver at admission and partnering with them throughout admission and discharge planning resulted in caregivers feeling respected, and caregivers were more likely to value their interactions with care team members.

3.2. Structure

A complementary theme to Support is Structure, which reflected the system-level procedures and processes that could be modified to foster more supportive nurse communication with caregivers in discharge interactions while improving the nurse care experience. Examples of procedural changes included, providing caregivers with an informational packet and establishing a point of contact among the care team upon admission (Agarwal et al., 2020; Bauer et al., 2011; Bloomer et al., 2016; Fitzgerald et al., 2011; Jamieson et al., 2016; Sawan et al., 2021; Whittamore et al., 2014), standardization of training protocols and goals of care conversations between nurse and caregiver—including a review of policies that may conflict with family involvement (Boltz et al., 2021; Chenoweth et al., 2021; Kelley et al., 2019; Sagbakken et al., 2020)—providing daily reports on patient status (Fitzgerald et al., 2011), creating a discharge plan at admission and reviewing patient care needs with caregivers over the span of the admission period (Fitzgerald et al., 2011; Gwernan-Jones et al., 2020; Mockford, 2015; Stockwell-Smith et al., 2017), and, when possible, assigning patients consistent care team members to ensure continuity of care and sharing patient information with patient's primary care provider (Mockford et al., 2016; Prusaczyk et al., 2019).

Setting shared expectations referred to strategies that ensured the perspectives, ideals, and goals of the care team, patient, and caregiver were aligned (Bauer et al., 2011; Boltz et al., 2021; Jamieson et al., 2016; Mockford et al., 2016). One such strategy was to consider the caregiver's schedule when determining the time of discharge, which facilitated greater coordination among the care team and caregiver (Bauer et al., 2011). Mockford et al. (2017) proposed frequent and timely communication with caregivers, including a pre-hospital discharge conversation to ensure seamless home-care transitions. In another study, the researchers focused on the goal attainment of caregivers to improve the physical and cognitive recovery of hospitalized persons, as well as caregiver perceptions of preparedness (Boltz et al., 2021). Confirming baseline information about the patient (e.g., social profile, needs of care, physical function) and determining caregiver goals—actionable items to be accomplished following discharge that aligned with educational materials provided to caregivers (e.g., toileting, sleep hygiene)—resulted in improved functional outcomes, including a return to baseline function and decreases in delirium.

Informational resources were also identified as key to the discharge process. We identified mentions to various forms of information that could and should be made available to caregivers (Agarwal et al., 2020; Boltz et al., 2021; Cesta, 2014; Fitzgerald et al., 2011; Jamieson et al., 2016; Kelley et al., 2019; Prusaczyk et al., 2019; Sawan et al., 2021; Whittamore et al., 2014). Approaches to providing informational resources included the creation of a review document with information for caregivers on how the patient behaved and the types of care/medications administered, especially if caregivers were unable to participate in a discharge conversation (Whittamore et al., 2014). By making information available in these ways, caregivers reported greater satisfaction with overall care. A clinical expert emphasized the need for educational guides and written materials to support caregiver efforts following discharge (Cesta, 2014). Prusaczyk et al. (2019) also recommended sharing discharge summaries with patients’ primary care providers to ensure the broader care team had access to the information needed to better assist the caregiver and patient following discharge. In the same study, they found that seriously ill patients, such as those with dementia, were significantly less likely to receive necessary education to manage care when compared to patients without dementia. Another example of informational resources was in the form of patient pictures or “About Me” worksheets that could be displayed next to the patient's bed to give the care team a better sense of whom they were caring for and to familiarize the patient with their surroundings (Kelley et al., 2019). Lack of connection among the care team, caregivers, and patients were detrimental to the delivery of quality care.

The sub-theme of Standardization reflected opportunities to update policy to promote discharge communication training and discharge procedures that enabled greater transparency, thereby supporting a more efficient discharge conversation and better caregiver activation and preparedness to care for the patient following discharge (Bauer et al., 2011; Chenoweth et al., 2021; Fitzgerald et al., 2011; Gwernan-Jones et al., 2020; Kelley et al., 2019; Mockford, 2015; Mockford et al., 2016; Prusazcyk et al., 2019; Sagbakken et al., 2020; Stockwell-Smith et al., 2017; Whittamore et al., 2014). Researchers highlighted various approaches to the care process that could become standard practice, including a policy to notify caregivers of a patient's impending discharge before the discharge process is initiated and to confirm sufficient support was available for caregivers and patients prior to discharge (Bauer et al., 2011; Chenoweth et al., 2021). Other standardization practices included assigning nurses with expertise or experience to applicable patients and adequate staffing levels to ensure ample time for caregivers to receive and process new health and discharge information (Mockford, 2015). Through these approaches, it was found that caregivers felt involved in the coordination of care, capable in managing patient care following discharge, and comfortable contacting resources for additional consultation.

4. Discussion

We conducted a scoping review of applicable literature synthesizing features of communication known to enhance nurse delivery of high-quality information during discharge conversations with caregivers. Through the process of extraction and synthesis, communication practices were further refined into two overarching themes of Support and Structure. These themes and relevant sub-themes presented a range of communication approaches evidenced to improve the nurse care experience as well as caregiver activation and preparedness.

Researchers suggested there were a variety of interpersonal communication techniques that nurses could adopt to facilitate delivery of high-quality information to caregivers at discharge (Chan et al., 2019; Solli et al., 2015). However, amidst the research surrounding nurse communication with caregivers, only one group of researchers considered the impact of communication engagement on nurse outcomes (Gwernan-Jones et al., 2020). Given the real environmental pressures surrounding the discharge conversation and recognized need to improve nurse care experience (Deeks et al., 2016; Kang and Hur, 2021; Kwame and Petrucka, 2021), more studies should account for nurse engagement with communication-based interventions and perceived impacts on professional fulfillment.

We also observed the overlap between themes, highlighting that structure facilitates support. This observation is consistent with previous research. Chen et al. (2023) used a socio-ecological model to understand the facilitators and barriers in palliative care delivery among patients with Parkinson's Disease. The socio-ecological model accounted for the communication across levels within the healthcare system, from individual patient needs to interpersonal support and system-level efforts to standardize palliative care consults. The findings from our scoping review suggest that the socio-ecological model may be useful for examining the multilevel factors involved in the hospital discharge process and identifying interpersonal and structural interventions for enhancing the discharge experience. For example, standardizing a goal attainment discussion in every discharge conversation could serve as a useful strategy to effectively set expectations, identify needs, and confirm shared understanding—all of which support the efforts of nurses and caregivers. Like support, many of the structure themes could reasonably be embedded in existing discharge processes, with some exceptions. Ensuring adequate staffing, allocating time, scheduling nurses according to illness expertise, and staff trainings require additional resources that may not be available. Although these structural changes could aid in enhancing discharge conversations, we present multiple alternatives that likely offer similar outcomes.

Finally, through our analysis, we identified a lack of empirical research using communication-based interventions designed to improve the discharge conversation experience for caregivers and nurses. Most of the studies included used qualitative methodologies, such as interviews, to gather perspectives and experiences. Although these qualitative methods afford a richness in understanding barriers and facilitators to effective discharge conversations, they do not offer evidence or scalable models for widespread adoption. During our review process, many communication-based interventions focused on digital interfaces and continuity of care interaction following discharge. Although these are important to patient care, these infrastructures are often costly, difficult to access, and harder to sustain long-term (Ownsworth et al., 2020; Toye et al., 2016). Future research that explores the efficacy of communication-based interventions involving low-demand support and structural strategies during the discharge encounter may prove useful in reducing the need for subsequent communication channels. We also note the absence of disruptions during discharge conversations. It is likely that discharge conversations are often interrupted due to competing clinical demands (Kang and Hur, 2021). Understanding how these interruptions impact delivery of discharge information is a potential gap in the literature and introduces opportunities for future research. From a policy perspective, changes such as the US 2024 Medicare Physician Fee Schedule, which allows providers to bill for caregiver education and training, would also likely increase the feasibility of incorporating interventions to support nurse communication with caregivers in the context of patient discharge (National Alliance for Caregiving, 2024).

4.1. Limitations

Due to the prevalence of caregiver involvement, we focused on the communicative exchange between nurse and caregiver during discharge of older patients with cognitive decline or Alzheimer's disease and related dementia. Caregiver roles, like a parent who recently delivered a child, for example, likely have different considerations related to preparedness that are not captured in this review. Due to the inclusion of research displaying a wide range of methodologies, we were unable to produce more systematic findings. The nature of the data, however, provides nuance to the distinct features of communication occurring at discharge and opportunities to improve the discharge experience. Our search criteria included non-English-language articles. Google translate was used in the initial review of non-English-language articles, and it was determined that those articles did not meet study eligibility criteria. The use of Google translate at this stage could have resulted in translation and interpretation errors that may have impacted our determination of study eligibility. We also excluded articles that included communication modalities beyond face-to-face, such as Zoom. In many cases, Zoom or similar alternative forms of communication appeared in research on home-based care interventions following discharge. We recognize that by excluding this research we are limiting the range of communication strategies possible. Most studies included in the review were conducted in the United Kingdom (UK) and Australia, which should be considered in terms of generalizability and transferability. The mixture of private and government-funded health care programming available in the US compared to the UK and Australia's universal health care systems present variations in access to care.

4.2. Conclusions

We synthesized features of communication that enhanced nurse delivery of high-quality information to caregivers of older patients with cognitive decline or Alzheimer's disease and related dementia at discharge. Based on our review of research over the past 12 years, we established a set of recommendations for improving features of interpersonal communication and structural processes. We also pointed out the need to consider nurse outcomes related to the discharge encounter and communication-based interventions that offer feasible, adoptable communication practices and procedural strategies to improve the delivery of care.

CRediT authorship contribution statement

Marie C. Haverfield: Writing – review & editing, Writing – original draft, Validation, Supervision, Project administration, Formal analysis, Conceptualization. Gisselle De Leon: Writing – review & editing, Writing – original draft, Validation, Project administration, Formal analysis. Angelica Johnson: Project administration, Formal analysis. Victoria L. Jackson: Formal analysis. Geetali Basu: Writing – review & editing, Data curation. Jane Dodge: Writing – review & editing, Data curation.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.