Daniel David

Abstract

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic severely disrupted hospice care, yet there is little research regarding how widespread disruptions affected clinician and family decision-making. We aimed to understand how the pandemic affected structures, processes, and outcomes of end-of-life care. Research Design and Methods: Retrospective narrative chart review of electronic health records of 61 patients referred and admitted to hospice from 3 New York City geriatrics practices who died between March 1, 2020, and March 31, 2021. We linked longitudinal, unstructured medical, and hospice electronic health record notes to create a real-time, multiperspective trajectory of patients' interactions with providers using directed content analysis. Results: Most patients had dementia and were enrolled in hospice for 11 days. Care processes were shaped by structural factors (staffing, supplies, and governmental/institutional policies), and outcomes were prioritized by care teams and families (protecting safety, maintaining high-touch care, honoring patient values, and supporting patients emotionally and spiritually). Processes used to achieve these outcomes were decision-making, care delivery, supporting a "good death,"and emotional and spiritual support. Discussion and Implications: Care processes were negotiated throughout the end of life, with clinicians and families making in-the-moment decisions. Some adaptations were effective but also placed extraordinary pressure on paid and family caregivers. Healthcare teams' and families' goals to meet patients' end-of-life priorities can be supported by ongoing assessment of patient goals and process changes needed to support them, stronger structural supports for paid and family caregivers, incentivizing relationships across primary care and hospice teams, and extending social work and spiritual care.

Abstract

Background: Aortic Stenosis (AS) is a common syndrome in older adults wherein the narrowing of the aortic valve impedes blood flow, resulting in advanced heart failure.1 AS is associated with a high mortality rate (50 % at 6 months if left untreated), substantial symptom burden, and reduced quality of life.1-3 Transcatheter aortic valve replacement (TAVR) was approved in 2012 as a less invasive alternative to surgical valve repair, offering a treatment for older frail patients. Although objective outcomes have been widely reported,4 the perspectives of older adults undergoing the TAVR process have never been synthesized. Objectives: To contextualize the perspectives and experiences of older adults undergoing TAVR. Methods: An integrative review was conducted using Whittemore and Knafl's five-stage methodology.5 Four electronic databases were searched in April 2023. Articles were included if a qualitative methodology was used to assess the perceptions of older adults (>65 years old) undergoing or recovering from TAVR. Results: Out of 4619 articles screened, 12 articles met the criteria, representing 353 individuals from 10 countries. Relevant themes included the need for an individualized care plan, caregiver and family support, communication and education, persistent psychosocial and physical symptoms, and the unique recovery journey. Conclusion: Older adults with AS undergoing TAVR generally perceive their procedure positively. Improved interdisciplinary and holistic management, open communication, symptom assessment, support, and education is needed.

Abstract

PURPOSE: To understand perceived facilitators and barriers older adults experienced in accessing coronavirus disease 2019 (COVID-19) vaccines. METHOD: An electronic survey was distributed to older adults and those familiar with experiences of older adults accessing COVID-19 vaccines. Analysis included descriptive statistics and directed content analysis of open-ended responses, guided by the National Institute on Aging Health Disparities Research Framework. RESULTS: Most participants (n = 294) identified as White (79.5%), 33.8% identified as Hispanic, 8.1% identified as Black, and 12.4% identified as Other. Two thirds of respondents were male (68.6%), and the median age was 67 years. Five key themes emerged: Availability and Accessibility, Information, Cost, Safety and Side Effects, and Sense of Security. CONCLUSION: Barriers and facilitators to accessing COVID-19 vaccines for older populations paralleled those seen in other demographics. Similar needs likely exist for access to other vaccines and health care in general. Vaccine rollouts, particularly in public health emergencies, must be carried out with care and an awareness of the barriers faced by vulnerable groups.

Abstract

Context: The critical role of hospice and palliative care in response to the COVID-19 pandemic is well recognized, but there is limited evidence to guide healthcare leadership through future crises. Objectives: Our goal was to support future organizational resilience by exploring hospice and palliative team members’ perspectives on crisis leadership during the COVID-19 pandemic in New York City (NYC). Methods: This qualitative descriptive study used individual, semi-structured interviews of purposively sampled interdisciplinary team members. Enrollment sites were two large NYC metro hospice care organizations and one outpatient palliative care practice. We asked participants to complete a demographic form and a 45–60 minute interview. We used descriptive statistics and thematic analysis, respectively, for data analysis. We triangulated the data by presenting preliminary study findings to a group of clinicians (n=21) from one of the referring organizations. Results: Participants (n=30) were professionally diverse (e.g., nurses, physicians, social workers, chaplains, administrators), experienced (mean=17 years; 10 years in hospice), and highly educated (83% ≥ master's degree). About half (n=15) self-identified as white, non-Hispanic, and nearly half (n=13) self-identified as being from a racial/ethnic minoritized group. Two (n=2) did not wish to self-identify. We identified four themes that reflected challenges and adaptive responses to providing care during a crisis: Stay Open and Stay Safe; Act Flexibly; Lead Adaptively; and Create a Culture of Solidarity. Conclusion: While additional work is indicated, findings offer direction for a crisis management playbook to guide leadership in hospice, palliative care, and other healthcare settings in future crises.

Abstract

Context: Despite efforts to enhance equity, disparities in early palliative care (PC) access for historically minoritized patients with advanced breast cancer (ABC) persist. Insight into patient and clinician perspectives are needed to inform future models aimed at improving equity in PC access and outcomes. Objectives: To explore qualitative barriers and facilitators to early PC access in an urban setting with Black and Latina women with ABC. Methods: In this qualitative descriptive study, we conducted one-on-one interviews with Black and Latina women with ABC (N = 20) and interdisciplinary clinicians (N = 20) between February 2022 and February 2023. Participants were recruited from urban academic and community cancer clinics. Transcripts were analyzed using an inductive coding and thematic analysis approach. Results: Barriers identified by both patients and clinicians included lack of communication between oncology, PC, and primary care teams, limited understanding of PC among patients and non-PC clinicians, language and health literacy-related communication challenges, and racism and marginalization, including implicit bias and lack of diverse racial/ethnic representation in the supportive care workforce. Facilitators identified by both patients and clinicians included patient-to-patient referrals, support groups breaking cultural stigma on topics including self-advocacy and PC, referrals from trusted providers, and community organizations’ abilities to overcome challenges related to social determinants of health, most specifically logistical and financial support. Conclusions: Patients and clinicians reported similar barriers and facilitators to PC access, most commonly through the lens of care coordination and communication. These findings will inform future adaptation of a culturally and linguistically care model to improve access to early PC services for Black and Latina women with ABC.

Abstract

Context: Social determinants of health (SDOH) impacted the quality of home hospice care provided during the COVID-19 pandemic. Perspectives from professionals who provided care identify challenges and lessons learned from their experience. Objective: To examine hospice professionals’ perspectives of how SDOH affected the delivery of high-quality home hospice care in New York City (NYC) during the COVID-19 pandemic. Methods: We conducted semistructured interviews with 30 hospice professionals who delivered care to home hospice patients during the COVID-19 pandemic in NYC using a qualitative descriptive design. Purposive sampling was used to recruit professionals from a range of disciplines including physicians, advanced practice providers, nurses, social workers, chaplains, and hospice administration and management. Participants worked for one of two large NYC metro hospices and one outpatient palliative care practice serving the five boroughs of NYC and the surrounding suburbs. Rapid qualitative analysis was used to identify themes. Results: Thirty hospice professionals were interviewed, spanning a variety of clinical and administrative roles. Most (21 out of 30) reported that social determinants affected access and/or delivery of equitable hospice care. Two key themes emerged from interviews: (1) SDOH exist and affect the delivery of high-quality care and (2) disparities were exacerbated during the COVID-19 pandemic resulting in barriers to care. Subthemes outline barriers described by hospice professionals: decreased hospice enrollment, telehealth challenges, resulting in deficient patient/family education, shortages of nursing assistants in some neighborhoods, and diminished overall quality of hospice care for some patients. SDOH created barriers to hospice care through neighborhood factors, resource barriers, and system challenges. Conclusion: SDOH provide a context to understand disparity in the provision of hospice care. COVID-19 exacerbated these conditions. Addressing multidimensional barriers created by SDOH is key in creating high-quality and equitable hospice care, particularly during a crisis.

Abstract

Objectives: As symptoms emerge and worsen in people living with dementia, their spouses can benefit from behavioral interventions to support their adjustment as a care partner. The Wish Outcome Obstacle Plan (WOOP) intervention improves the well-being of spouses of people living with dementia early in the disease course, but intervention mechanisms and opportunities for improvement are unclear. The present study gave voice to spouses who participated in a trial of WOOP, describing how WOOP was incorporated into their lives and how it could be improved for future implementation. Method: For this qualitative study, we conducted longitudinal semi-structured interviews among 21 spouses of people living with dementia (three interviews over three months; 63 interviews total). Codebook thematic analysis was performed. Results: Three meta-themes were derived: (1) assessing baseline strengths and limitations of WOOP, (2) learning from experience, and (3) fine-tuning and sustaining WOOP. Participants described how WOOP addressed their interpersonal and emotional stressors, their responses to behaviors of the person living with dementia, and their relationship quality. Considerations for future intervention delivery (e.g., solo vs. in group settings) and instructions (e.g., encouraging writing vs. thinking through the four steps of WOOP) were identified as areas of improvement. Conclusions: WOOP was described as a practical, feasible, and desirable intervention for spouses at the early stages of their partner's dementia. Participants made WOOP easier to incorporate in their everyday lives by adapting the design into a mental exercise that they used as needed. Suggestions from participants specified how to make the everyday use of WOOP more feasible, sustainable, and applicable in a variety of contexts. Trial Registration: ClinicalTrials.gov HIC 2000021852.

Abstract

Background: The Self- and Family Management Framework was created in 2006 to help structure self- and family management science. Based on a series of reviews and syntheses of emerging research and critical evaluation, we developed the Framework into a robust nursing theory. Purpose: In this article, we reintroduce the Self- and Family Management Framework as the Middle Range Theory of Self- and Family Management of Chronic Illness. Methods: We review steps in the development and updating of the Framework, share rationale for advancement to a middle range theory, explicate components of the newly designed model, and propose future directions. Discussion and Conclusion: It is our hope that this middle range theory will guide researchers and clinicians more comprehensively in supporting patients and families managing chronic illness, which will in turn inform continued theory development.

Abstract

Objective: To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). Design: A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. Setting and Participants: The study occurred at a M-ALF in the Bronx, New York. A researcher in residence recruited 13 residents (11 Black or African American, 2 Asian) using purposive sampling. Methods: Demographic data and mental health indicators (depression, anxiety, stress, hopelessness) were measured with questionnaires (Center for Epidemiological Studies Depression Scale, Edmonton Symptom Assessment System, Perceived Stress Scale, Beck Hopelessness Survey) and analyzed with descriptive statistics. Interviews were conducted between June and November 2021, transcribed, and analyzed using conventional content analysis. Results: Thirteen residents (mean age: 73.4 years, mean length of stay: 3.5 years; range: 1.0-7.5) completed data collection. Quantitatively indicators of unmet mental health were common. Qualitatively, residents reported barriers to mental health access to address depression, anxiety, and substance use. This was accompanied by concerns surrounding loss of autonomy, mistrust for M-ALF organizational support, isolation and uncertainty about how to receive mental health support. Perspectives were shaped by past experiences with institutional living, serious illness, and being unhoused. Themes and subthemes were (1) mental health need (unmet mental health need, depression, and anxiety and seeking support through non–mental health resources) and (2) barriers to mental health support (dissatisfaction with M-ALF care, perceived threats to autonomy, desire for autonomy that leads to diminished care seeking). Conclusion and Implications: Residents of M-ALF have mental health needs for which care is stymied by loss of autonomy, lack of resources, and the M-ALF environment. Residents use unconventional resources to address needs that may be neither efficient nor effective. Novel mental health interventions and processes are needed to improve mental health access and should prioritize residents’ desire for autonomy and the unique circumstances of living in M-ALF.