Daniel David

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

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

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.

Abstract

In order to reduce care partner strain and support aging in place for people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD), adult day centers (ADCs) must manage behavioral and psychological symptoms of dementia (BPSD). The purpose of this paper is to identify person-centered care strategies used by center staff to manage BPSD. Six focus groups with center staff (n = 31) were conducted. Data were analyzed using directed content analysis guided by Kitwood’s conceptual approach to cultivating personhood in dementia care. Themes were identified and organized within Kitwood’s framework. The results demonstrate that staff incorporate evidence-based person-centered approaches to AD/ADRD care that align with Kitwood’s principles of comfort, attachment, inclusion, and identity. Staff individualize their approach to people with AD/ADRD within a group setting. They monitor, engage, socially stimulate, and, when needed, de-stimulate them. Centers are flexible social environments with underrecognized expertise managing BPSD using person-centered approaches.

Abstract

Context: Evaluation of usability and mobile health content is critical for ensuring effective implementation of technology utilizing interventions tailored to the needs of hospice care providers for people living with dementia in community-based settings. Objectives: To evaluate the usability, content, and “readiness to launch” of the Aliviado mobile health app for interdisciplinary team members participating in the Hospice Advanced Dementia Symptom Management and Quality of Life. Methods: Usability of the Aliviado app was assessed in 86 respondents with an adapted IBM Computer Usability Satisfaction Questionnaire following Hospice Advanced Dementia Symptom Management and Quality of Life training and implementation of the mobile app. Results: More than half of users receiving training employed the mobile app in practice. Users reported use as: Daily-6.3%, Weekly-39.6%, monthly-54.2%. The highest measured attributes were usefulness, value, and effectiveness. Over 90% deemed the app “ready to launch” with no or minimal problems. Conclusion: This study shows that a newly-developed mobile app is usable and can be successfully adopted for care of people living with dementia.

Abstract

Background: Over two-Thirds of nursing home (NH) residents are eligible for palliative care (PC), yet few receive it, particularly outside of hospice. Little is known about the technical feasibility and acceptability of using telehealth for PC consultations in NHs. Objective: To determine the technical feasibility and acceptability of PC telehealth for NH residents seen by a PC team in the hospital in the previous 30 days. Design: Mixed methods study including data collection from field observations, focus groups about the telehealth experience with content analysis, and a web-based survey about technical feasibility and acceptability. Sample and Approach: Eighteen participants (six PC-eligible NH residents, one PC physician, five family members, six NH nurses) were recruited in 2016 to participate in one of six PC video visits followed by a video-based focus group and web-based survey. Results: All participants were comfortable with the PC video visit format, believed it could improve communication and care coordination, and reported they could see themselves using telehealth in the near future. For technical feasibility, audio quality was rated mostly good/very good (71%) and visual quality was rated fair (50%). Conclusions: PC video visits are technically feasible and acceptable to NH residents, families, and staff, representing an innovative and relatively low-cost opportunity to improve access to needed NH-based PC services. Assessing stakeholder perspectives on the use of this technology can help inform the selection of the proper telehealth platform to meet the clinical and infrastructure needs, as well as protocol modifications required before testing in a larger trial.

Abstract

Objectives: Behavioral interventions can reduce distress for couples coping with early-stage dementia. However, most interventions are limited in accessibility and fail to address individualized goals. This pilot study examined the dyadic effects on multiple indicators of well-being of the Wish Outcome Obstacle Plan (WOOP) intervention, which guides participants to use Mental Contrasting with Implementation Intentions to achieve attainable goals in their daily lives. Methods: This randomized controlled trial included 45 older persons with early-stage dementia (PWD) and their spousal care partners (CPs: n = 90 individuals). CPs were assigned randomly to WOOP training immediately after baseline (WOOP) or after a 3-month follow-up interview (Control; CON). Both groups received a dementia care education booklet. WOOP CPs were instructed to practice WOOP at least once a day for 2 weeks. All CPs and PWDs completed home surveys (baseline, 2 weeks, and 3 months), measuring perceived stress, depressive symptoms, quality of life, and affect. Results: Mixed-effects models showed significant intervention × time interaction effects with large effect sizes for CPs on three of the five outcomes over 3 months. Compared with CON, WOOP CPs had decreased perceived stress (δ= 1.71) and increased quality of life (δ= 1.55) and positive affect (δ= 2.30). WOOP PWD showed decreased perceived stress (δ= 0.87) and increased quality of life (δ= 1.26), but these effects were not statistically significant. Discussion: WOOP is a promising, brief intervention to improve dementia CPs' well-being that may also positively affect their partners with dementia.