Journaling among home care workers during the COVID-19 pandemic: A promising method for qualitative data collection

Qualitative methods that capture individual lived experiences throughout rapidly changing circumstances are particularly important during public health emergencies. The COVID-19 pandemic has put home care workers at risk as they provide vital services in homes to individuals with chronic conditions or disabilities. Using a 6-week journaling process in which we enrolled participants at different points, we sought to examine experiences of home care workers (n = 47) in the United States in New York and Michigan during April–July 2020 of the COVID-19 pandemic. Our methods for data collection and analysis were guided by a general qualitative approach as we aimed to examine the weekly perspectives and lived experiences of home care workers. We asked individuals to respond to our journaling prompts weekly to capture their reflections in "real time." To better understand home care workers' perspectives on journaling and the broader external context in which they provided care, we triangulated our data with interviews with home care workers (n = 19) and home health agency representatives (n = 9). We explored the feasibility of a rolling journaling process during an unprecedented public health emergency, characterized by rapid changes and uncertainty in day-to-day life, and reflect on lessons learned to guide future research on journaling for data collection, particularly for marginalized workers during public health crises, when events are evolving rapidly.

Experiences of moral distress in a COVID-19 intensive care unit: A qualitative study of nurses and respiratory therapists in the United States.

The COVID-19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID-19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to consider needs for additional support. Twenty semi-structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges.

Experiences with Telehealth for Outpatient Palliative Care: Findings from a Mixed-Methods Study of Patients and Providers across the United States.

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.

Clinical Ethics Consultation During the First COVID-19 Pandemic Surge at an Academic Medical Center: A Mixed Methods Analysis.

While a significant literature has appeared discussing theoretical ethical concerns regarding COVID-19, particularly regarding resource prioritization, as well as a number of personal reflections on providing patient care during the early stages of the pandemic, systematic analysis of the actual ethical issues involving patient care during this time is limited. This single-center retrospective cohort mixed methods study of ethics consultations during the first surge of the COVID 19 pandemic in Massachusetts between March 15, 2020 through June 15, 2020 aim to fill this gap. Results indicate that there was no significant difference in the median number of monthly consultation cases during the first COVID-19 surge compared to the same period the year prior and that the characteristics of the ethics consults during the COVID-19 surge and same period the year prior were also similar. Through inductive analysis, we identified four themes related to ethics consults during the first COVID-19 surge including (1) prognostic difficulty for COVID-19 positive patients, (2) challenges related to visitor restrictions, (3) end of life scenarios, and (4) family members who were also positive for COVID-19. Cases were complex and often aligned with multiple themes. These patient case-related sources of ethical issues were managed against the backdrop of intense systemic ethical issues and a near lockdown of daily life. Healthcare ethics consultants can learn from this experience to enhance training to be ready for future disasters.

Journaling among home care workers during the COVID-19 pandemic: A promising method for qualitative data collection

Qualitative methods that capture individual lived experiences throughout rapidly changing circumstances are particularly important during public health emergencies. The COVID-19 pandemic has put home care workers at risk as they provide vital services in homes to individuals with chronic conditions or disabilities. Using a 6-week journaling process in which we enrolled participants at different points, we sought to examine experiences of home care workers (n = 47) in the United States in New York and Michigan during April?July 2020 of the COVID-19 pandemic. Our methods for data collection and analysis were guided by a general qualitative approach as we aimed to examine the weekly perspectives and lived experiences of home care workers. We asked individuals to respond to our journaling prompts weekly to capture their reflections in ?real time.? To better understand home care workers? perspectives on journaling and the broader external context in which they provided care, we triangulated our data with interviews with home care workers (n = 19) and home health agency representatives (n = 9). We explored the feasibility of a rolling journaling process during an unprecedented public health emergency, characterized by rapid changes and uncertainty in day-to-day life, and reflect on lessons learned to guide future research on journaling for data collection, particularly for marginalized workers during public health crises, when events are evolving rapidly.

Encountering the social determinants of health on a COVID-19 ICU: Frontline providers' perspectives on inequality in a time of pandemic.

Efforts to improve health equity may be advanced by understanding health care providers' perceptions of the causes of health inequalities. Drawing on data from in-depth interviews with nurses and registered respiratory therapists (RRTs) who served on intensive care units (ICUs) during the first surge of the pandemic, this paper examines how frontline providers perceive and attribute the unequal impacts of COVID-19. It shows that nurses and RRTs quickly perceived the pandemic's disproportionate burden on Black and Latinx individuals and families. Providers attribute these inequalities to the social determinants of health, and also raise questions about how barriers to healthcare access may have made some patients more vulnerable to the worst consequences of COVID-19. Providers' perceptions of inequality and its consequences on COVID-19 ICUs were emotionally impactful and distressing, suggesting that this is a critical moment for offering clinicians practical strategies for understanding and addressing the persistent structural inequities that cause racial inequalities in health.

Intensive care unit nurses living through COVID-19: A qualitative study.

AIMS: To understand how nurses experience providing care for patients hospitalized with COVID-19 in intensive care units. BACKGROUND: As hospitals adjust staffing patterns to meet the demands of the pandemic, nurses have direct physical contact with ill patients, placing themselves and their families at physical and emotional risk. METHODS: From June to August 2020, semi-structured interviews were conducted. Sixteen nurses caring for COVID-19 patients during the first surge of the pandemic were selected via purposive sampling. Participants worked in ICUs of a quaternary 1,000-bed hospital in the Northeast United States. Interviews were transcribed verbatim, identifiers were removed, and data were coded thematically. RESULTS: Our exploratory study identified four themes that describe the experiences of nurses providing care to patients in COVID-19 ICUs during the first surge: (a) challenges of working with new co-workers and teams, (b) challenges of maintaining existing working relationships, (c) role of nursing leadership in providing information and maintaining morale and (d) the importance of institutional-level acknowledgement of their work. CONCLUSIONS: As the pandemic continues, hospitals should implement nursing staffing models that maintain and strengthen existing relationships to minimize exhaustion and burnout. IMPLICATIONS FOR NURSING MANAGEMENT: To better support nurses, hospital leaders need to account for their experiences caring for COVID-19 patients when making staffing decisions.

Home Care Aide Safety Concerns and Job Challenges During the COVID-19 Pandemic.

Home care aides are on the frontlines providing care to vulnerable individuals in their homes during the COVID-19 pandemic yet are often excluded from policies to protect health care workers. The goal of this study was to examine experiences of agency-employed home care aides during the COVID-19 pandemic and to identify ways to mitigate concerns. We used an innovative journaling approach with thirty-seven aides as well as in-depth interviews with fifteen aides and leadership representatives from nine home health agencies in New York and Michigan. Workers described a range of concerns around workplace safety including uncertainty around whether a client had COVID-19, inadequate access to personal protective equipment and safe transportation, as well as fundamental changes to interactions with clients. Agencies also faced challenges acquiring personal protective equipment for their aides. This research points to needed resources to support home care aides and home health agencies both during a public health crisis and in the future.