Oral cancer (OC) survivors experience debilitating side effects that affect their quality of life (QOL) and that of their caregivers. This study aimed to develop and evaluate a dyadic, web-based intervention to improve survivor self-management and survivor/caregiver QOL. A qualitative needs assessment (semi-structured interviews) with 13 OC survivors and 12 caregivers was conducted to discern information and support needs as well as preferences regarding website features and tools. Results using Grounded Theory analysis showed that OC survivors and caregivers: 1) want and need practical advice about managing side effects; 2) want to reach out to other survivors/caregivers for information and support; and, 3) have both overlapping and unique needs and preferences regarding website features. Usability testing (N=6 survivors; 5 caregivers) uncovered problems with the intuitiveness, navigation, and design of the website that were subsequently addressed. Users rated the website favorably on the dimensions of attractiveness, controllability, efficiency, intuitiveness, and learnability, and gave it a total usability score of 80/100. Overall, this study demonstrates that OC survivors and caregivers are interested in using an online program to improve QOL, and that providing tailored website content and features based on the person's role as survivor or caregiver is important in this population.

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.

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. RESULTSThe 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.

PURPOSE 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. METHODS Ninety-three oral cancer survivors completed cross-sectional surveys within one-year of completing radiotherapy. RESULTS 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%). CONCLUSION 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.