"I Felt Like I Mattered": Caring is a key ingredient of collaborative care for chronic illness.

OBJECTIVES: To identify perceptions and experiences related to caring science and collaborative care in intervention participants of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) study, a randomized, multi-site clinical trial for patients with chronic heart failure and reduced health status. METHODS: Forty-five participants completed semi-structured, telephone interviews with a focus on intervention components, impact of the intervention on participants' lives, and recommendations for intervention change. Data were analyzed using an inductive content analysis approach focusing on the presence and frequency of text to identify patterns, categories, and themes across participants without an a priori code book. The validity of the identified categories was enhanced through triangulation. RESULTS: Three themes were identified: (1) intervention providers' caring/helping attitude and caring/helping communication; (2) care team availability to respond to concerns or questions; and (3) help with understanding and navigating the healthcare system. DISCUSSION: Patients highly value caring attitudes and communication, availability, and empowerment to understand and navigate healthcare systems. These attitudes and behaviors may be important mediators of the success of collaborative care programs. These are consistent with the theory of caring science, a framework that is relevant more broadly to patient-centered and team-based care models.

Association Between Patient Portal Activities and End-of-Life Outcomes Among Deceased Patients in the Last 12 Months of Life.

Objective: The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. Methods: A retrospective cohort (n = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using χ2 statistics and generalized linear models. Results: Higher portal engagement types were associated with higher rates of hospitalizations (p = 0.0492), advance directive completion (p = 0.0226), and hospice use (p = 0.0070). Conclusion: Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.

Factors Associated With Mortality and Hospice Use Among Medicare Beneficiaries With Heart Failure Who Received Home Health Services.

BACKGROUND: Although many Medicare beneficiaries with heart failure (HF) are discharged with home health services, little is known about mortality rates and hospice use in this group. OBJECTIVES: To identify risk factors for 6-month mortality and hospice use among patients hospitalized due to HF who receive home health care, which could inform efforts to improve palliative and hospice use for these patients. METHODS: A retrospective cohort analysis was conducted in a 100% national sample of Medicare fee-for-service beneficiaries with HF who were discharged to home health care between 2017 and 2018. Multivariable Cox regression models examined factors associated with 6-month mortality, and multivariable logistic regression models examined factors associated with hospice use at the time of death. RESULTS: A total of 285,359 Medicare beneficiaries were hospitalized with HF and discharged with home health care; 15.5% (44,174) died within 6 months. Variables most strongly associated with mortality included: age > 85 years (hazard ratio [HR] 1.66, 95% CI 1.61-1.71), urgent/emergency hospital admission (HR 1.68, 1.61-1.76), and "serious" condition compared to "stable" condition (HR 1.64, CI 1.52-1.78). Among 44,174 decedents, 48.2% (21,284) received hospice care at the time of death. Those with lower odds of hospice use at death included patients who were: < 65 years (odds ratio [OR] 0.65, CI 0.59-0.72); of Black (OR 0.64, CI 0.59-0.68) or Hispanic race/ethnicity (OR 0.79, CI 0.72-0.88); and Medicaid-eligible (OR 0.80, CI 0.76-0.85). CONCLUSIONS: Although many patients hospitalized for HF are at risk of 6-month mortality and may benefit from palliative and/or hospice services, our findings indicate under-use of hospice care and important disparities in hospice use by race/ethnicity and socioeconomic status.

Acceptability of Online Yoga Among Individuals With Chronic Conditions and Their Caregivers: Qualitative Study.

BACKGROUND: The online delivery of yoga interventions rapidly expanded during the COVID-19 pandemic, and preliminary studies indicate that online yoga is feasible across multiple chronic conditions. However, few yoga studies provide synchronous online yoga sessions and rarely target the caregiving dyad. Online chronic disease management interventions have been evaluated across conditions, life spans, and diverse samples. However, the perceived acceptability of online yoga, including self-reported satisfaction and online delivery preferences, is underexplored among individuals with chronic conditions and their caregivers. Understanding user preferences is essential for successful and safe online yoga implementation. OBJECTIVE: We aimed to qualitatively examine the perceived acceptability of online yoga among individuals with chronic conditions and their caregivers who participated in an online dyadic intervention that merged yoga and self-management education to develop skills (MY-Skills) to manage persistent pain. METHODS: We conducted a qualitative study among 9 dyads (>18 years of age; individuals experiencing persistent moderate pain) who participated in MY-Skills online during the COVID-19 pandemic. The intervention consisted of 16 online, synchronous yoga sessions over 8 weeks for both dyad members. After the completion of the intervention, participants (N=18) participated in semistructured telephone interviews for around 20 minutes, discussing their preferences, challenges, and recommendations for improved online delivery. Interviews were analyzed by using a rapid analytic approach. RESULTS: MY-Skills participants were, on average, aged 62.7 (SD 19) years; were primarily women; were primarily White; and had a mean of 5.5 (SD 3) chronic conditions. Both participants and caregivers reported moderate pain severity scores (mean 6.02, SD 1.3) on the Brief Pain Inventory. The following three themes were identified related to online delivery: (1) participants indicated a preference for the intervention to be in person rather than online because they were distracted in the home setting, because they felt that in-person yoga would be more engaging, because the yoga therapist could physically correct positions, and because of safety concerns (eg, fear of falling); (2) participants indicated good acceptability of online MY-Skills delivery due to convenience, access, and comfort with being in their home; and (3) recommendations for improving online delivery highlighted a need for additional and accessible technical support. CONCLUSIONS: Both individuals with chronic conditions and their caregivers find online yoga to be an acceptable intervention. Participants who preferred in-person yoga did so due to distractions in the home and group dynamics. Some participants preferred in-person corrections to ensure correct positioning, while others felt safe with verbal modifications in their homes. Convenience and access were the primary reasons for preferring online delivery. To improve online delivery, future yoga studies should include specific activities for fostering group engagement, enhancing safety protocols, and increasing technical support. TRIAL REGISTRATION: ClinicalTrials.gov NCT03440320; https://clinicaltrials.gov/ct2/show/NCT03440320.

A Web-Based Decision Aid for Caregivers of Persons With Dementia With Firearm Access (Safe at Home Study): Protocol for a Randomized Controlled Trial.

BACKGROUND: Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The "Safety in Dementia" (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. OBJECTIVE: Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. METHODS: The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ≥18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. RESULTS: The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. CONCLUSIONS: The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. TRIAL REGISTRATION: ClinicalTrials.gov NCT05173922; https://clinicaltrials.gov/ct2/show/NCT05173922. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43702.

Matching Exercise Volume in Active Control Groups for Yoga Interventions.

Context: The selection of a control group should foremost be determined by the study's primary intended outcome and trial design. When examining the effects of the physical movements that comprise yoga postures, an active control group, with physical exercise as the control, is often recommended. Objective: The current study aimed to define an active control group that participates in physical exercise, emphasizing the importance of matching the exercise's volume to that of an intervention group's yoga, and to provide a tangible example from a federally funded, recently completed, randomized controlled trial. Design: The research team designed a control group, providing a case study as a example of it. Setting: The study took place at Colorado State University. Intervention: The exercise component for the control group included 60 minutes of low-intensity exercise, matched with 60 minutes of Hatha yoga for the intervention group. Because the intervention included chronic pain self-management in addition to the exercise component, the education component for the control group included 45 minutes of group-based, general health-and-wellness education and discussion. Conclusions: Future randomized trials for yoga and other complementary or integrative health interventions should continue to use appropriate active control groups, which will serve to enhance the scientific rigor of conclusions that can be drawn with respect to the effectiveness of these interventions.

Manual development for a multi-modal, dyadic intervention for persistent pain: A Qualitative Study.

Background: People who experience persistent pain often require help from a family member, partner, or friend. These caregivers frequently have pain but are often not included in interventions. Caregivers and care receivers who both experience pain are more likely to be socially isolated, and experience communication conflict and decreased quality of life. Interventions should target caregiving dyads to help them manage their pain together. However, there are few intervention manuals or research protocols developed to support the dyad. Objective: The purpose of this qualitative study was to explore the needs of caregiving dyads, including input from dyads and medical and allied health experts to inform the development of an intervention manual for dyads with persistent pain. Method: A total of 16 caregiving dyads experiencing persistent pain, one care receiver (caregiver could not participate), and 8 health experts, recruited from the community, participated in focus groups. Data were transcribed verbatim, uploaded into NVivo software, and analyzed using constant comparison qualitative methods. Results: Findings identified the importance of a new intervention to focus on modifiable approaches to managing pain as a dyad, addressing the emotional and psychological effects of experiencing pain as a dyad, and careful consideration of logistics to implement an intervention with dyads in persistent pain. Conclusion: These results highlight important considerations to meet the needs of caregiving dyads with pain. This study informed the development of the MY-Skills intervention, a novel program that merges self-management education with adaptive yoga to treat persistent pain in caregiving dyads.

Usability and Acceptability of a Palliative Care Mobile Intervention for Older Adults With Heart Failure and Caregivers: Observational Study.

BACKGROUND: Heart failure is a leading cause of death among older adults. Digital health can increase access to and awareness of palliative care for patients with advanced heart failure and their caregivers. However, few palliative care digital interventions target heart failure or patients' caregivers, family, and friends, termed here as the social convoy. To address this need, the Social Convoy Palliative Care (Convoy-Pal) mobile intervention was developed to deliver self-management tools and palliative care resources to older adults with advanced heart failure and their social convoys. OBJECTIVE: The goal of the research was to test the acceptability and usability of Convoy-Pal among older adults with advanced heart failure and their social convoys. METHODS: Convoy-Pal includes tablet-based and smartwatch tools facilitating self-management and access to palliative care resources. Older adults and social convoy caregivers completed an acceptability and usability interview via Zoom, including open-ended questions and the Mobile Application Rating Scale: User Version (uMARS). Descriptive analysis was conducted to summarize the results of open-ended feedback and self-reported acceptability and usability. RESULTS: A total of 26 participants (16 older adults and 10 social convoy caregivers) participated in the interview. Overall, the feedback from users was good (uMARS mean 3.96/5 [SD 0.81]). Both older adults and social convoy caregivers scored information provided by Convoy-Pal the highest (mean 4.22 [SD 0.75] and mean 4.21 [SD 0.64], respectively). Aesthetics, functionality, and engagement were also perceived as acceptable (mean >3.5). Open-ended feedback resulted in 5 themes including improvements to goal setting, monitoring tools, daily check-in call feature, portal and mobile app, and convoy assessment. CONCLUSIONS: Convoy-Pal was perceived as acceptable with good usability among older adults with heart failure and their social convoy caregivers. With good acceptability, Convoy-Pal may ultimately lead to increased access to palliative care resources and facilitate self-management among older adults with heart failure and their social convoy caregivers.

Perspectives from leadership and frontline staff on telehealth transitions in the Los Angeles safety net during the COVID-19 pandemic and beyond.

Objectives: The start of the COVID-19 pandemic led the Los Angeles safety net health system to dramatically reduce in-person visits and transition abruptly to telehealth/telemedicine services to deliver clinical care (remote telephone and video visits). However, safety net patients and the settings that serve them face a "digital divide" that could impact effective implementation of such digital care. The study objective was to examine attitudes and perspectives of leadership and frontline staff regarding telehealth integration in the Los Angeles safety net, with a focus on telemedicine video visits. Methods: This qualitative study took place in the Los Angeles County Department of Health Services (LAC DHS), the second-largest safety net health system in the US. This system disproportionately serves the uninsured, Medicaid, racial/ethnic minority, low-income, and Limited English Proficient (LEP) patient populations of Los Angeles County. Staff and leadership personnel from each of the five major LAC DHS hospital center clinics, and community-based clinics from the LAC DHS Ambulatory Care Network (ACN) were individually interviewed (video or phone calls), and discussions were recorded. Interview guides were based on the Consolidated Framework for Implementation Research (CFIR), and included questions about the video visit technology platform and its usability, staff resources, clinic needs, and facilitators and barriers to general telehealth implementation and use. Interviews were analyzed for summary of major themes. Results: Twenty semi-structured interviews were conducted in August to October 2020. Participants included LAC DHS physicians, nurses, medical assistants, and physical therapists with clinical and/or administrative roles. Narrative themes surrounding telehealth implementation, with video visits as the case study, were identified and then categorized at the patient, clinic (including provider), and health system levels. Conclusions: Patient, clinic, and health system level factors must be considered when disseminating telehealth services across the safety net. Participant discussions illustrated how multilevel facilitators and barriers influenced the feasibility of video visits and other telehealth encounters. Future research should explore proposed solutions from frontline stakeholders as testable interventions towards advancing equity in telehealth implementation: from patient training and support, to standardized workflows that leverage the expertise of multidisciplinary teams.

"You Lose Some Good Friends": Death and Grief in Assisted Living.

The purpose of this study was to investigate responses to death at multiple levels within the assisted living (AL) system and to characterize the psychosocial impact of death on surviving residents. This study used secondary thematic analysis of multiple data sources collected as part of a larger quantitative-focused study with 21 ALs. Data sources included: (a) community documents, e.g., newsletters; (b) descriptive and reflective observational field notes; and (c) memos and key statements from interviews with residents (n = 18). Three themes emerged from the data: administrative memorialization practices, resident perceptions of staff communication related to death, and resident psychosocial responses to death. Surviving residents reported using both adaptive and avoidant strategies to cope with psychological responses to death; noting that grief responses extended to the loss of the deceased resident's family, friends, and pets. Residents also perceived staff-resident communication and community memorialization practices as incongruent with a "family-like" social climate. Findings highlight the potential utility of a multi-level approach to improving psychosocial aspects of end-of-life care and grief management by targeting AL administration, workforce, and individuals. Social workers are well-positioned to lead these types of psychosocial interventions but must contend with staffing barriers limiting clinical roles in AL.

"Made Me Realize That Life Is Worth Living": A Qualitative Study of Patient Perceptions of a Primary Palliative Care Intervention.

Background: Primary palliative care is needed to meet the complex needs of patients with serious illness and their families. However, patient perceptions of primary palliative care are not well understood and can inform subsequent primary palliative care interventions and implementation. Objective: Elicit the patient perspective on a primary palliative care intervention, Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA), from patient perspectives. Design: Qualitative study using patient interviews and two methods of triangulation. Setting/Subjects: Between July 2014 and September 2015, we interviewed 45 patients who participated in the intervention in a Veterans Affairs (VA) (primary site), academic, and urban safety-net health system in the United States. Main Measures: Participants were asked about what was most and least helpful, how the intervention affected participants' lives, and what should be changed about the intervention. Data were analyzed using a general inductive approach. To enhance validity of the results, we triangulated the findings from patient interviews, reviews of care coordinator documentation, and interprofessional palliative care providers. Results: The six themes identified that primary care intervention: (1) Cared for My Psychosocial Needs, (2) Encouraged Self-Management, (3) Medication Recommendations Worked, (4) Facilitated Goal Attainment, (5) Team was Beneficial, and (6) Good Visit Timing. Conclusions: Participants experienced benefits from the primary palliative care intervention and attributed these benefits to individualized assessment and support, facilitation of skill building and self-management, and oversight from an interprofessional care team. Future primary palliative care interventions may benefit from targeting these specific patient-valued processes.

Behavioral Health Services with Short-Stay Residents in Skilled Nursing Facilities: A Qualitative Study of Clinicians and Administrators.

OBJECTIVES: The perspectives of professionals involved in behavioral health (BH) services with short-stay residents in skilled nursing facilities (SNFs) are rarely captured in the literature. This study examines the real-world experiences of BH clinicians and administrators in post-acute/subacute care units in SNFs. METHODS: This qualitative study used semi-structured interviews with 18 clinicians (e.g., psychologists and social workers) and five administrators (e.g., directors of social services or BH company executives) involved in BH services with short-stay SNF residents. Interviews were recorded, transcribed, and analyzed by two independent coders using conventional thematic content analysis. RESULTS: Three themes emerged from the data: (1) BH needs are high among short-stay residents and families during post-acute care transitions; (2) BH services offer multiple unique opportunities to enhance post-acute/subacute care in SNFs; and (3) barriers to providing optimal BH care exist at multiple levels and require action from BH clinicians and stakeholders. CONCLUSIONS: Variability in clinician roles and barriers to optimized care suggest the need for future research targeting best practices and implementation strategies for BH services with short-stay SNF residents. CLINICAL IMPLICATIONS: Results identified multiple ways in which BH services may enhance resident, family, and staff outcomes, as well as the milieu in SNFs.

Not Speaking the Same Language-Lower Portal Use for Limited English Proficient Patients in the Los Angeles Safety Net.

BACKGROUND: With the expansion of online patient portals linked to electronic health records in safety-net health care settings, we need more data on the use of these websites by patients with limited English proficiency (LEP) in order to guide their continued design, implementation, and evaluation as portals for the underserved. METHODS: Cross-sectional portal data for the Los Angeles County Department of Health Services, the second largest safety-net system in the nation. We examined differences in portal use across language (English vs. non-English/LEP), covering four years since implementation. RESULTS: Of 425,281 patients assigned to primary care as of March 2019, 55,190 (13%) unique portal enrollments were registered. Among 54,981 portal users, LEP users had lower adjusted odds of using an active portal function (e.g., medication refill) vs. English-speakers. CONCLUSIONS: Even among those registered to access portals, these websites are underused, particularly by LEP patients. All systems must facilitate use for these populations, especially for time-saving active functions, which can improve outcomes. Health systems must prioritize design/usability as a factor to counter LEP underuse.

Benefits, Facilitators, and Recommendations for Digital Health Academic-Industry Collaboration: A Mini Review.

Digital health remains a growing and challenging niche in public health practice. Academic-industry collaboration (AIC) offers a mechanism to bring disparate sectors together to alleviate digital health challenges of engagement, reach, sustainability, dissemination, evaluation, and equity. Despite the ongoing endorsements for AIC in digital health, limited understanding exists of successful AIC exists. Most published research highlights the barriers of collaboration rather than efficacy, leaving collaborators asking: What are the benefits and facilitators of AIC and do they apply in digital health? As an initial effort to fill the gap in the literature, the purpose of this mini review outlines the benefits and facilitators from previous AIC and offers recommendations specific to digital health.

Patient Portals to Support Palliative and End-of-Life Care: Scoping Review.

BACKGROUND: Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE: This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS: We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19). RESULTS: In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS: PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.

Psychological interventions with older adults during inpatient postacute rehabilitation: A systematic review.

Objective: Older adults in inpatient postacute care settings report high rates of depression and anxiety. Psychological interventions address these symptoms through educational, cognitive, behavioral, relaxation, and/or psychosocial approaches. The purpose of this study was to systematically evaluate the quality of existing literature on psychological interventions for depression and/or anxiety among older adults during an inpatient postacute care stay. Method: Medline, Embase, Cochrane Library, CINAHL, PsycINFO, and Google Scholar were searched for key concepts. Studies were included that (a) sampled skilled nursing facility or inpatient rehabilitation facility patients, (b) evaluated a psychological intervention, (c) measured depression and/or anxiety symptoms before and after interventions, and (d) had a mean or median age of 65+. Two raters assessed articles for inclusion and risk of bias. Results: Search strategies identified 7,506 articles for screening; nine met inclusion criteria. Included studies varied by study design, intervention type, and methodological quality. Only one study had low overall risk of bias. Four studies demonstrated preliminary treatment benefits for depression symptoms; none reported benefits for anxiety symptoms. Conclusions: Most of the included studies were limited by small sample size and high risk of bias. Thus, currently, there is insufficient evidence to support the effectiveness of psychological interventions for depression or anxiety among older adults during an inpatient postacute care stay. The authors offer a detailed discussion of methodological limitations, empirical gaps, and future directions to develop this body of literature. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Characteristics of Patients and Proxy Caregivers Using Patient Portals in the Setting of Serious Illness and End of Life.

Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. Use was characterized as (1) the discrete number of days the portal was used and (2) the number of days that portal features were accessed. Differences in use by user characteristics were assessed. Results: Patients flagged for serious illness (N = 6129) were 70.4 ± 14.2 years of age, and used the portal on average 50.4 days. Patients (N = 6517) in the last year of life were 76.7 ± 13.7 years of age and used the portal on average 43 days. Caregiver proxy use of the portal was low in both cohorts. Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care.