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1.
J Gerontol Soc Work ; 65(8): 822-831, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35272582

RESUMO

The COVID-19 pandemic and associated restrictions pose a significant health threat to older adults. Fear of COVID-19 is associated with increased disease transmission and numerous psychosocial health challenges. While social support has been studied extensively in gerontological literature, there is a gap in understanding how social networks influence fear of COVID-19. This study drew from a convenience sample of 239 adults 60+ years of age in the United States who completed a 20-min survey. Regression results indicate that higher social network was significantly associated with decreased fear of COVID-19. Identifying as female and as an ethnic minority were associated with increased fear of COVID-19. These findings document the need for social workers to promote enhanced social networks in reducing fear of COVID-19 among older adults and attend to disparate levels of fear among older women and people of color.


Assuntos
COVID-19 , Feminino , Estados Unidos/epidemiologia , Humanos , Idoso , COVID-19/epidemiologia , Pandemias , SARS-CoV-2 , Etnicidade , Grupos Minoritários , Medo , Rede Social
2.
J Gerontol Soc Work ; 65(6): 589-603, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34809525

RESUMO

Social workers in healthcare settings often support patient decision-making processes for complex medical decisions. The objective of this study was to examine decision support needs for patients considering aortic valve replacement (AVR) for aortic stenosis. Seventeen qualitative interviews were conducted to explore treatment decision experiences of patients who accepted AVR. Analysis was conducted using a mixed inductive-deductive approach. Fear was a prevalent response for most participants in the face of AVR. Two general paths of decision making emerged: an "active" information seeking approach, or a "passive" simplicity seeking approach. Patients with unique clinical presentations felt alienated by the decision-making process. Acknowledging fear while understanding different decision-making styles provide opportunities for social workers and other members of multidisciplinary teams to support complex patient decisions.


Assuntos
Estenose da Valva Aórtica , Implante de Prótese de Valva Cardíaca , Valva Aórtica/cirurgia , Estenose da Valva Aórtica/cirurgia , Tomada de Decisões , Humanos
3.
J Med Internet Res ; 23(9): e28797, 2021 09 16.
Artigo em Inglês | MEDLINE | ID: mdl-34528888

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Portais do Paciente , Assistência Terminal , Idoso , Cuidadores , Humanos , Cuidados Paliativos
4.
Patient Prefer Adherence ; 15: 721-728, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33883883

RESUMO

BACKGROUND: Growing evidence for coronary stents in patients with stable coronary artery disease (CAD) suggests that the benefits of stents are uncertain. The goal of this study was to assess patients' informational needs and how patients react to information about the uncertain benefit of stents to CAD patients. METHODS: Semi-structured qualitative interviews (N=20) were conducted with patients with stable CAD who received a recent stent. Data were coded and analyzed using a mixed inductive-deductive approach. RESULTS: Some patients mistakenly believed that the purpose of their stent was to prevent a future heart attack, and few were previously aware of the uncertain benefit. Nearly all patients perceived positive outcomes from their procedure, even if their symptoms persisted. Some patients had difficulty accepting evidence that stents may not reduce the risk of heart attack or reliably improve symptoms. Nonetheless, patients still expressed a desire to receive new information about the uncertain benefits of stents and wanted to have received this information early in their care. CONCLUSION: Many patients with stable CAD do not understand the intended benefit of coronary stents and want to be informed of the evidence of uncertain benefit of coronary stents, even if this would not change their decision. Improved communication and patient education tools are needed to better inform patients. An intervention providing patients with this information early has the potential to solve these problems.

5.
J Palliat Med ; 24(4): 505-513, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33439075

RESUMO

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Tomada de Decisões , Técnicas de Apoio para a Decisão , Humanos , Cuidados Paliativos , Participação do Paciente
6.
PLoS One ; 14(11): e0216971, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31721784

RESUMO

INTRODUCTION: There has been an increasing focus on disseminating research findings, but less about practices specific to disseminating and engaging non-researchers. The present project sought to describe dissemination practices and engagement of stakeholders among dissemination & implementation (D&I) scientists. METHODS: Methods to disseminate to and engage non-research stakeholders were assessed using an online survey sent to a broad, diverse sample of D&I scientists. RESULTS: Surveys were received from 210 participants. The majority of respondents were from university or research settings in the United States. (69%) or Canada (13%), representing a mix of clinical (28%) and community settings (34%). 26% had received formal training in D&I. Respondents indicated routinely engaging in a variety of dissemination-related activities, with academic journal publications (88%), conference presentations (86%), and reports to funders (74%) being the most frequent. Journal publication was identified as the most impactful on respondents' careers (94%), but face-to-face meetings with stakeholders were rated as most impactful on practice or policy (40%). Stakeholder involvement in research was common, with clinical and community-based researchers engaging stakeholder groups in broadly similar ways, but with critical differences noted between researchers with greater seniority, those with more D&I training, those based in the United States vs. Canada, and those in community vs. clinical research settings. CONCLUSIONS: There have been increases in stakeholder engagement, but few other practices since the 2012 survey, and some differences across subgroups. Methods to engage different stakeholders deserve more in-depth investigation. D&I researchers report substantial misalignment of incentives and behaviors related to dissemination to non-research audiences.


Assuntos
Pesquisa Biomédica/métodos , Disseminação de Informação/métodos , Canadá , Humanos , Análise Multivariada , Participação dos Interessados , Inquéritos e Questionários , Estados Unidos
7.
JMIR Cardio ; 2(2): e11358, 2018 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-31758775

RESUMO

BACKGROUND: Patients use Web-based medical information to understand medical conditions and treatments. A number of efforts have been made to understand the quality of professionally created content; however, none have described the quality of advice being provided between anonymous members of Web-based message boards. OBJECTIVE: The objective of this study was to characterize the quality of medical information provided between members of an anonymous internet message board addressing treatment with an implantable cardioverter-defibrillator (ICD). METHODS: We quantitatively analyzed 2 years of discussions using a mixed inductive-deductive framework, first, for instances in which members provided medical advice and, then, for the quality of the advice. RESULTS: We identified 82 instances of medical advice within 127 discussions. Advice covered 6 topical areas: (1) Device information, (2) Programming, (3) Cardiovascular disease, (4) Lead management, (5) Activity restriction, and (6) Management of other conditions. Across all advice, 50% (41/82) was deemed generally appropriate, 24% (20/82) inappropriate for most patients, 6% (5/82) controversial, and 20% (16/82) without sufficient context. Proportions of quality categories varied between topical areas. We have included representative examples. CONCLUSIONS: The quality of advice shared between anonymous members of a message board regarding ICDs varied considerably according to topical area and the specificity of advice. This report provides a model to describe the quality of the available Web-based patient-generated material.

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