The Long-COVID Well-Being Scale (LCOVID-WBS): Development of a nascent measure of long-COVID symptoms and impacts.

As is now well-known, COVID-19 is a highly contagious disease, which for some can cause symptoms that last long after initial infection. In 2021, a clinical set of symptoms referred to as long-COVID was identified. For many patients, long-COVID is a confusing and frightening multisystem disease, with the potential for myriad negative psychosocial effects, including significant impacts on employment and mental health, and requiring ongoing care. Research and treatment of long-COVID will be facilitated by a sound measure that addresses aspects of well-being, symptom experiences, and psychosocial impacts among long-COVID patients. The present work addresses this need by presenting the results of the development and preliminary psychometrics for the Long-COVID Well-Being Scale (LCOVID-WBS). In an exploratory factor analysis with a panel of 236 participants, researchers identified four factors: Emotional Strain, Physical Ability Strain, Control of Life, and Overall Evaluation of Health. The nascent measure represents the first step to measuring the impacts of long-COVID.

"It just makes you more vulnerable as an employee": Understanding the effects of disability stigma on employment in Parkinson's disease.

OBJECTIVE: Parkinson's disease (PD) is one of the most common neurodegenerative diseases in the United States, affecting approximately 1 million Americans. However, there is a dearth of research on the employment experiences of individuals with PD. This research article makes a crucial contribution to the literature by examining the role of disability stigma in shaping employment options in PD, with relevance to the experiences of adults with chronic and/or progressive diseases more broadly. METHODS: The author conducted individual semi-structured interviews with 23 adults under the age of 65 with PD. Interviews were audio-recorded and transcribed. The author utilized an integrated approach to analysis, primarily employing a thematic analysis approach. Additionally, a narrative analysis strategy, the Listening Guide, was integrated into the broader thematic analysis to deepen analysis of discrimination and stigma. RESULTS: Findings demonstrate how internalized, anticipated and/or experienced disability-related stigma profoundly affects employment experiences, influencing participants' work outcome expectations and acting as an employment barrier. DISCUSSION: Findings have implications for health care practice and education, disability policy, early intervention strategies after the onset of PD and priorities for future research.

Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research.

BACKGROUND: Participating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disproportionate burden of cancer mortality compared to Whites. Patient-engaged research is one potential strategy to address racial inequities in clinical trials, but little is known about best practices for engaging Black individuals and communities impacted by cancer in research partnerships. METHODS: We used a community engaged research approach to establish a patient advisory council (PAC) representative of the patient population served by a safety net hospital cancer center. We outline the process of establishing the PAC and the lessons learned. RESULTS: The inaugural PAC included 7 members representative of the cancer center's patient demographics. PAC members developed a patient centered vision, mission and action plan. PAC and community-academic research partners experienced the transformative power of centering the lived experiences of patients of color to promote health equity in cancer research. CONCLUSION: Establishing a patient advisory council at a safety net hospital cancer care center provided a platform for engaging a hardly reached population in patient centered research.

Participating in clinical trials is an important measure of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to participate in clinical trials and are more likely to die from cancer compared to Whites. Including Black patients as research partners is one way to improve racial equity in clinical trial participation. We established a patient advisory council (PAC) including patients and caregivers with similar racial demographics as the patients receiving care at a safety net hospital cancer center. PAC members partnered with the research team to develop a vision, mission, and action plan to improve research participation among patients of color. PAC members used their lived experiences and training from the research team to help develop a strategy to improve representation of patients of color in cancer research. This paper is focused on the PAC development process.

Impact of COVID-19 on services for people with disabilities and chronic health conditions.

BACKGROUND: People with disabilities and chronic health conditions rely on a range of services and supports to complete daily tasks, maintain health, and participate in the community. Preliminary research suggests the COVID-19 pandemic greatly disrupted these services and this population may be particularly susceptible to unemployment. OBJECTIVE: Describe employment and service disruptions for individuals with disabilities and chronic health conditions during the onset of community-based spread of COVID-19 in the United States. METHODS: Adults with disabilities and chronic health conditions completed online surveys to report employment and service changes via multiple choice and open-ended questions. Multiple choice questions were analyzed using descriptive statistics; open-ended responses were coded using content analysis. RESULTS: Participants (n = 109): 79.8% female, 88.1% white, 77.121% completed a 4-year college degree or greater, 61.4% had annual income ≥$45,000. Only 14.9% of survey respondents reported disruptions in employment. On average, 54.0% of service changes were due to discontinuation, including loss of physical therapy, job coaching, community organizations, transportation, and peer supports. Other changes included a shift to virtual service delivery and family members taking the role of service providers. CONCLUSIONS: Individuals with chronic health conditions and disabilities experienced service disruptions, even in a sample with considerably more economic, social, and educational privilege than the general population of people with chronic health conditions and disabilities in the United States.

Talking (or Not) About Sexual Violence: Newspaper Coverage of the Confirmation Hearings of Justices Thomas and Kavanaugh.

The ways in which sexual violence is portrayed in the media contribute to communities' understanding of violence and can influence survivor outcomes. The parallel cases of the confirmation hearings of Justices Kavanaugh and Thomas provide an opportunity to measure if and how the cultural zeitgeist has shifted around issues of sexual violence. This study sought to answer two questions: (a) When a supreme court nominee is accused of sexual violence, have the ways the mainstream media discussed the violence in newspaper headlines changed between 1991 and 2018? To what extent and how? (b) Have the ways the mainstream media characterizes the nominee and the accuser within and between 1991 and 2018 changed? How? Headlines were collected systematically from eight major U.S. newspapers, resulting in a data set of 373 headlines from 1991 and 249 from 2018. Qualitative thematic analysis was used to examine the characterizations of the accuser, nominee, and violence. Supplemental chi-square analyses were used to compare how violence was categorized in the two years. While less victim-blaming and minimization of sexual violence occurred in the 2018 headlines, newspapers continued to avoid naming the sexual violence. The characterizations of the nominee, accuser, and violence became depersonalized in 2018, focusing on politics rather than the people and issues at hand, likely reflecting a highly politicized American public. Despite the heightened attention to sexual violence that current movements have sparked, our analysis of comparable cases in 1991 and 2018 suggests newspaper headlines continued to avoid naming sexual violence as violence in 2018 as in 1991, and furthermore, contemporary language about sexual violence and its survivors and perpetrators has not changed to reflect an increased response to survivor healing and perpetrator change. Rather, shifts in language suggest survivors and perpetrators may be politicized as tools for parties and politicians to debate larger issues or stake political positions.

Use of Telemedicine for Emergency Triage in an Independent Senior Living Community: Mixed Methods Study.

BACKGROUND: Older, chronically ill individuals in independent living communities are frequently transferred to the emergency department (ED) for acute issues that could be managed in lower-acuity settings. Triage via telemedicine could deter unnecessary ED transfers. OBJECTIVE: We examined the effectiveness of a telemedicine intervention for emergency triage in an independent living community. METHODS: In the intervention community, a 950-resident independent senior living community, when a resident called for help, emergency medical technician-trained staff could engage an emergency medicine physician via telemedicine to assist with management and triage. We compared trends in the proportion of calls resulting in transport to the ED (ie, primary outcome) in the intervention community to two control communities. Secondary outcomes were telemedicine use and posttransport disposition. Semistructured focus groups of residents and staff were conducted to examine attitudes toward the intervention. Qualitative data analysis used thematic analysis. RESULTS: Although the service was offered at no cost to residents, use was low and we found no evidence of fewer ED transfers. The key barrier to program use was resistance from frontline staff members, who did not view telemedicine triage as a valuable tool for emergency response, instead perceiving it as time-consuming and as undermining their independent judgment. CONCLUSIONS: Engagement of, and acceptance by, frontline providers is a key consideration in using telemedicine triage to reduce unnecessary ED transfers.

Correction to: Behavioral Health Emergencies Encountered by Community Paramedics: Lessons from the Field and Opportunities for Skills Advancement.

Due to a production error, this article was inadvertently published without an abstract.

Behavioral Health Emergencies Encountered by Community Paramedics: Lessons from the Field and Opportunities for Skills Advancement.

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Assessing cancer center researcher and provider perspectives on patient engagement.

Participatory research approaches can help ensure research is culturally relevant and aligned with stakeholder priorities, but barriers exist between researchers and community stakeholders, particularly in communities of color. We developed a measurement tool for assessing oncology researcher and provider readiness to undertake patient-engaged research, and piloted this measurement tool among oncology researchers and providers at the hospital's cancer care center. A survey was developed by drawing from existing PCORI assessments as well as creating original questions, in an effort to develop an evidence-based survey tailored to this project. A total of 23 researchers and providers responded to the survey. The majority of respondents indicated that they were moderately or very familiar with the concept of patient-centered outcomes research. Most respondents had little to no experience engaging in participatory research and endorsed several barriers to engaging patients in the research process, including lack of experience and time. A mechanism for preparing and supporting researchers and providers is needed if cancer centers are to implement patient-powered research agendas as recommended by PCORI.

Institutional and Individual Factors Affecting Health and Employment for Low-Income Women With Chronic Health Conditions.

OBJECTIVES: This qualitative study explored risk and protective factors affecting employment and health among low-income older women with chronic health conditions or physical disabilities. METHODS: The authors conducted a secondary data analysis of 14 intensive interviews with low-income older women with chronic health conditions who had participated in a federally funded training and employment program for workers aged 55 and older. Qualitative data were analyzed using thematic analysis. RESULTS: The physical nature of the work and discrimination were risk factors, with unaccommodating work environments, ageism, and/or ableism, and internalized ageism identified as subthemes of discrimination. Protective factors, namely institutional supports (e.g., access to retraining, time management flexibility) enhanced health and self-confidence. Occupational demands matched with the capacity of the individual resulted in continued employment and improved health. DISCUSSION: Working conditions can degrade health through exposure to mental and physical health risks, or support health through access to financial and interpersonal resources. Institutional supports such as workplace flexibility and retraining are crucial to obtaining a good fit between occupational demands and the capacity of individuals, enabling a positive relationship between employment and health. Legislation designed to prevent discrimination, enhance opportunities for lifelong learning, and encourage flexible work arrangements among low-income women with chronic health conditions may facilitate healthier working lives.

Community engagement in patient-centered outcomes research: Benefits, barriers, and measurement.

INTRODUCTION: This study employed the Delphi method, an exploratory method used for group consensus building, to determine the benefits and challenges associated with community engagement in patient-centered outcomes research. METHODS: A series of email surveys were sent to the Patient-Centered Outcomes Research Institute (PCORI)-funded researchers (n = 103) in New England. Consensus was achieved through gathering themes and engaging participants in ranking their level of agreement over three rounds. In round one, participant responses were coded thematically and then tallied. In round two participants were asked to state their level of agreement with each of the themes using a Likert scale. Finally, in round three, the group was asked to rank the round two themes based on potential impact. RESULTS: Results suggested the greatest benefit of community engagement is that it brings multiple perspectives to the table, with 92% ranking it as the first or second most important contribution. Time was ranked as the most significant barrier to engaging community. Strategies to overcome barriers to community engagement include engaging key stakeholders early in the research, being kind and respectful and spending time with stakeholders. The most significant finding was that no researchers reported having specific measures to evaluate community engagement. CONCLUSION: Community engagement can enhance both research relevance and methodology when researchers are engaged in meaningful collaborations. Advancing the science of community engagement will require the development of evaluation metrics to examine the multiple domains of partnership.