Providing clarity: communicating the benefits of palliative care beyond end-of-life support.

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings. Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options. Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning. Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care. Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health. Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

Caregivers' experience with Tele-Savvy Caregiver Program post-hospitalization.

Despite the frequent hospitalizations and readmissions of persons living with dementia (PLWD), no telehealth transitional care interventions focus on PLWDs' unpaid caregivers. Tele-Savvy Caregiver Program is a 43-day evidence-based online psychoeducational intervention for PLWDs' caregivers. The aim of this formative evaluation was to explore caregivers' acceptability of and experience with their participation in Tele-Savvy after their PLWDs' hospital discharge. Additionally, we gathered caregivers' feedback on the recommended features of a transitional care intervention, suitable for caregivers' schedule and needs post-discharge. Fifteen caregivers completed the interviews. Data were analyzed via conventional content analysis. Four categories were identified: (1) Tele-Savvy improved participants' understanding of dementia and caregiving; (2) hospitalization started a "new level of normal"; (3) PLWDs' health concerns; and (4) transitional care intervention development. Participation in Tele-Savvy was acceptable for most caregivers. Participants' feedback provides content and structural guidance for the development of a new transitional care intervention for PLWDs' caregivers.

Patient and caregiver experiences with a telemedicine intensive care unit recovery clinic.

BACKGROUND: Intensive Care Unit Recovery Clinics (ICU-RCs) were founded to address post-intensive care syndrome among ICU survivors. Telemedicine ICU-RCs may facilitate access for more ICU survivors, however, patient and caregiver experiences with telemedicine ICU-RCs have not been explored qualitatively. OBJECTIVE: To explore patient and informal caregiver experiences with a telemedicine ICU-RC. METHODS: Our qualitative exploratory cross-sectional study was guided by qualitative description methodology. Telemedicine ICU-RC visits were conducted at 3- and 12-weeks post-discharge following critical illness. Patients, and caregivers when available, met with an ICU pharmacist, ICU physician, and a neuropsychologist via Zoom. Thereafter, we conducted qualitative (1:1) telephone interviews with 14 patients and 12 caregivers recruited purposefully. Data were analyzed using conventional content analysis. RESULTS: Five themes were identified: (1) general impressions of the intervention; (2) intervention organization and delivery; (3) intervention substance; (4) caregiver participation; and (5) ways to improve the intervention. Participants found the telemedicine delivery acceptable, convenient, time-saving, and conducive to thorough discussions. Participants appreciated the information, reassurance, and validation. Attention to mental health during the visits was strongly endorsed. Caregiver involvement depended on patient self-management and technical ability. Suggestions included scheduling a 1-week post-discharge visit, more follow-up visits, and individualizing content for in-depth discussions, including mental health evaluation. CONCLUSIONS: The study results enhance the understanding of patient and caregiver experiences with a telemedicine ICU-RC. Participants' narratives helped to formulate recommendations to improve telemedicine ICU-RC delivery and content. Acceptability of this intervention indicates the potential for wider implementation of telemedicine ICU-RCs to reach more ICU survivors.

Patients' and Caregivers' Perceptions of Intensive Care Unit Hospitalization and Recovery.

BACKGROUND: Telehealth-based intensive care unit recovery clinics (ICU-RCs) can increase access to post-ICU recovery care for patients and their families. It is crucial to understand patients' and caregivers' experience of illness and recovery to build patient- and family-centered ICU-RCs. OBJECTIVE: To explore patients' and caregivers' perceptions of ICU hospitalization and recovery. METHODS: Individual semistructured telephone interviews were conducted with 14 patients and 12 caregivers who participated in a telehealth ICU-RC. This study was guided by qualitative description methodology. Conventional content analysis was used to analyze the data. RESULTS: Patients described their ICU hospitalization as scary, traumatic, and lonely. Participants' feedback on hospitalization ranged from praise to criticism. Patients wanted more realistic and detailed prognostication about post-ICU recovery and more physical therapy after discharge. Patients strongly valued the mental health component of ICU-RC visits, which contrasted with the scant attention paid to mental health in other postdischarge health care settings. Their knowledge about post-ICU recovery and connectedness to a primary care provider varied. CONCLUSIONS: Examining patients' and caregivers' perceptions of ICU hospitalization and recovery highlights ICU-RC components that can be strengthened to support patient- and family-centered recovery. The ICU-RC staff should invite patients to share feedback about their ICU stay; give a timely, realistic prognosis for recovery; offer mental health consultations; provide physical therapy; and partner with patients and their caregivers to develop and deliver post-ICU care.

Characteristics associated with neuropsychiatric symptoms in persons living with dementia and caregiver distress and diminished well-being.

BACKGROUND: The population of persons living with dementia (PLWDs) is increasing, although mainstream dementia care quality is suboptimal. PURPOSE: To identify characteristics associated with: (1) PLWDs' neuropsychiatric symptoms and quality of life; and (2) distress from neuropsychiatric symptoms and well-being among their family caregivers (N = 49). METHODOLOGY: Cross-sectional single-group examination of PLWD and caregivers when they enrolled into a nurse-led dementia-centered primary care clinic. Pearson correlations were run between characteristics of PLWD and caregiver and variables representing PLWD's neuropsychiatric symptoms and quality of life and their caregivers' well-being. Statistically significant correlations were reported via Cohen d statistics. RESULTS: Caregivers' characteristics associated with higher distress from neuropsychiatric symptoms and diminished well-being included Black race, female gender, younger age, caring for a parent with dementia, and being employed. Characteristics of PLWD associated with caregivers' higher distress and diminished well-being included longer time since dementia onset, higher Charlson Comorbidity Index, and non-Alzheimer dementia. Caregivers' characteristics associated with higher neuropsychiatric symptom burden included Black race, female gender, younger age, caring for parent PLWD, and being employed. Characteristics of PLWDs associated with higher neuropsychiatric symptom burden included non-Alzheimer dementia, longer time since dementia onset, more comorbidities, and higher Charlson Comorbidity Index. Finally, a longer time since dementia onset was associated with PLWDs' lower quality of life. CONCLUSIONS: Black race, caring for caring for a parent with dementia, younger age, and being employed were characteristics linked to PLWDs' higher neuropsychiatric symptom burden and caregivers' diminished well-being. IMPLICATIONS: Clinicians must assess and intervene with unpaid caregivers who may not appear obviously distressed.

Caregivers' Experience at an Integrated Memory Care Clinic.

The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Caregivers described the Clinic as "the only place you should go to for dementia [care]." Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that "we're all out here swimming on our own." They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. [Research in Gerontological Nursing, 14(2), 69-78.].

Patient and caregiver outcomes at the integrated memory care clinic.

The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers' psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs' quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers' distress regarding their PLWDs' delusions and anxiety, and PLWDs' severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.

Testing Tele-Savvy: Protocol for a randomized controlled trial.

Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.