Knowledge, Perceptions, and Preferred Information Sources Related to COVID-19 Among Central Pennsylvania Adults Early in the Pandemic: A Mixed Methods Cross-Sectional Survey.

PURPOSE: To explore public knowledge, understanding of public health recommendations, perceptions, and trust in information sources related to COVID-19. METHODS: A cross-sectional survey of central Pennsylvanian adults evaluated self-reported knowledge, and a convergent, mixed methods design was used to assess beliefs about recommendations, intended behaviors, perceptions, and concerns related to infectious disease risk, and trust of information sources. RESULTS: The survey was completed by 5,948 adults. The estimated probability of correct response for the basic knowledge score, weighted with confidence, was 0.79 (95% CI, 0.79-0.80). Knowledge was significantly higher in patients with higher education and nonminority race. While the majority of respondents reported that they believed following CDC recommendations would decrease the spread of COVID-19 in their community and intended to adhere to them, only 65.2% rated social isolation with the highest level of belief and adherence. The most trusted information source was federal public health websites (42.8%). Qualitative responses aligned with quantitative data and described concerns about illness, epidemiologic issues, economic and societal disruptions, and distrust of the executive branch's messaging. The survey was limited by a lack of minority representation, potential selection bias, and evolving COVID-19 information that may impact generalizability and interpretability. CONCLUSIONS: Knowledge about COVID-19 and intended adherence to behavioral recommendations were high. There was substantial distrust of the executive branch of the federal government, however, and concern about mixed messaging and information overload. These findings highlight the importance of consistent messaging from trusted sources that reaches diverse groups.

Survivorship Challenges and Information Needs after Radiotherapy for Oral Cancer.

Oral cancer (OC) treatment can lead to considerable functional impairment, psychological distress, and decrements in quality of life. Given that limited information and support services are available for cancer survivors, many are turning to the Internet. However, little is known about the specific information and service needs of OC survivors. We conducted a descriptive study to (1) characterize the associations between OC survivor functional problems and distress and (2) describe the Internet use of OC survivors, their satisfaction with existing sources of information/support, and their unmet information and service needs. Ninety-three oral cancer survivors completed cross-sectional surveys within 1-year of completing radiotherapy. Clinical levels of distress were 10 % for depression and 16 % for anxiety. Dental health, smell, and range of motion problems were significant (p < .05) determinants of both depression and anxiety symptoms. Eighty-three percent of survivors used the Internet; most used it to obtain health-related information or support. Unmet information needs included how to live a healthy lifestyle after treatment (87 %), strategies for dealing with eating and speaking problems (81 %), and information about what to expect in terms of side effects after treatment (76 %). Findings suggest that interventions that teach survivors coping and problem-solving skills to manage and cope with functional impairments may help to alleviate distress. Results of this study support the need for psychoeducational interventions for this population and showcase the potential of the Internet as a feasible mode for future dissemination.

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

BACKGROUND: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. AIM: To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP. DESIGN: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. SETTING/PARTICIPANTS: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. RESULTS: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions. CONCLUSIONS: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

Voices from the Pandemic: A Qualitative Study of Family Experiences and Suggestions regarding the Care of Critically Ill Patients.

Rationale: Intensive care unit (ICU) visitation restrictions during the coronavirus disease (COVID-19) pandemic have drastically reduced family-engaged care. Understanding the impact of physical distancing on family members of ICU patients is needed to inform future policies. Objectives: To understand the experiences of family members of critically ill patients with COVID-19 when physically distanced from their loved ones and to explore ways clinicians may support them. Methods: This qualitative study of an observational cohort study reports data from 74 family members of ICU patients with COVID-19 at 10 United States hospitals in four states, chosen based on geographic and demographic diversity. Adult family members of patients admitted to the ICU with COVID-19 during the early phase of the pandemic (February-June 2020) were invited to participate in a phone interview. Interviews followed a semistructured guide to assess four constructs: illness narrative, stress experiences, communication experiences, and satisfaction with care. Interviews were transcribed verbatim and analyzed using an inductive approach to thematic analysis. Results: Among 74 interviewees, the mean age was 53.0 years, 55% were white, and 76% were female. Physical distancing contributed to substantial stress and harms (nine themes). Participants described profound suffering and psychological illness, unfavorable perceptions of care, and weakened therapeutic relationship between family members and clinicians. Three communication principles emerged as those most valued by family members: contact, consistency, and compassion (the 3Cs). Family members offered suggestions to guide clinicians faced with communicating with physically distanced families. Conclusions: Visitation restrictions impose substantial psychological harms upon family members of critically ill patients. Derived from the voics of family members, our findings warrant strong consideration when implementing visitation restrictions in the ICU and advocate for investment in infrastructure (including staffing and videoconferencing) to support communication. This study offers family-derived recommendations to operationalize the 3Cs to guide and improve communication in times of physical distancing during the COVID-19 pandemic and beyond.

Effect of Advance Care Planning on Surrogate Decision Makers' Preparedness for Decision Making: Results of a Mixed-Methods Randomized Controlled Trial.

Background: Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role. Objective: To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP. Design: Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012-2017). Setting/Participants: Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses. Main Outcomes and Measures: Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: Very Prepared, Very Unprepared, or In Between Prepared and Unprepared. Themes and categories were compared across arms. Results: About 72.72% of spokespersons (144/198) reported being Very Prepared and 27.28% (54/198) reported being Very Unprepared or In Between with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions. Conclusions: Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions. Trial Registration: NCT02429479.

Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial.

CONTEXT: Spokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP. OBJECTIVES: To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress. METHODS: Secondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm). RESULTS: ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment. CONCLUSION: Identifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons.