IMPORTANCE Less than 25% of African American individuals have completed advance directives and are thus vulnerable to poor end-of-life care. Low-cost interventions are needed to increase engagement in advance care planning (ACP).OBJECTIVES To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed.EXPOSURES Attendance at an end-of-life conversation game (Hello) played in groups of 4 to 6 participants for 60 minutes. DESIGN, SETTING, AND PARTICIPANTS Prospective, mixed-methods cohort study conducted from 2018 to 2019 with a 3-to 11-month follow-up interview. Game events were held in 53 community venues across the US; 15 were purposively sampled for onsite research procedures. Of 428 attendees at purposively sampled sites, 386 (90%) consented to research procedures (6 attendees were removed from analysis for protocol deviation). Of 367 attendees who provided accurate contact information, 232 (63%) were contacted, and 220 were included in follow-up analyses. MAIN OUTCOMES AND MEASURESThe primary outcome was advance directive completion rates after the intervention. Secondary outcomes included rates of other ACP behaviors, ACP engagement, conversation satisfaction and realism, and participants' Net Promoter Score (a measure of endorsement). Follow-up telephone interviews explored the game experience and relevant ACP behaviors of attendees. RESULTS Of 380 individuals who participated (mean [SD] age, 62.2 [13.8] years; 304 were female [80%], and 348 were [92%] African American), none withdrew because of an adverse event. After the intervention, 91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 ACP behavior. There was a moderate increase in the self-efficacy domain on the ACP Engagement Survey (mean [SD] change from before to after the game, 0.54 [0.98]; P < .001).The mean (SD) conversation satisfaction score was 6.21 (0.93) (range, 1-7, with 7 being highest satisfaction), and the overall Net Promoter Score was 57.89 (range, −100 to 100, with 100 being highest endorsement). Interviews revealed 5 themes about the game: (1) it was a useful forum for ACP; (2) it provided new information and perspective; (3) it was emotionally beneficial; (4) it increased appreciation for ACP; and (5) it empowered and motivated participants to perform ACP.Mixed-methods integration showed convergence across data sets. (continued) Key Points Question Can a low-cost, easily scaled, end-of-life conversation game motivate underserved African American individuals to engage in advance care planning? Findings This national mixed-methods cohort study reaching 384 underserved African American individuals found that high rates of advance care planning behavior were associated with participation in game events at community venues. Meaning The end-of-life conversation game may be a useful tool for engaging und...
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.
IMPORTANCEThe psychological symptoms associated with having a family member admitted to the intensive care unit (ICU) during the COVID-19 pandemic are not well defined.OBJECTIVE To examine the prevalence of symptoms of stress-related disorders, primarily posttraumatic stress disorder (PTSD), in family members of patients admitted to the ICU with COVID-19 approximately 90 days after admission.DESIGN, SETTING, AND PARTICIPANTS This prospective, multisite, mixed-methods observational cohort study assessed 330 family members of patients admitted to the ICU (except in New York City, which had a random sample of 25% of all admitted patients per month) between February 1 and July 31, 2020, at 8 academic-affiliated and 4 community-based hospitals in 5 US states.EXPOSURE Having a family member in the ICU with COVID-19.MAIN OUTCOMES AND MEASURES Symptoms of PTSD at 3 months, as defined by a score of 10 or higher on the Impact of Events Scale 6 (IES-6). RESULTS A total of 330 participants (mean [SD] age, 51.2 [15.1] years; 228 [69.1%] women; 150 [52.8%] White; 92 [29.8%] Hispanic) were surveyed at the 3-month time point. Most individuals were the patients' child (129 [40.6%]) or spouse or partner (81 [25.5%]). The mean (SD) IES-6 score at 3 months was 11.9 (6.1), with 201 of 316 respondents (63.6%) having scores of 10 or higher, indicating significant symptoms of PTSD. Female participants had an adjusted mean IES-6 score of 2.6 points higher (95% CI, 1.4-3.8; P < .001) than male participants, whereas Hispanic participants scored a mean of 2.7 points higher compared with non-Hispanic participants (95% CI, 1.0-4.3; P = .002). Those with graduate school experience had an adjusted mean score of 3.3 points lower (95% CI, 1.5-5.1; P < .001) compared with those with up to a high school degree or equivalent. Qualitative analyses found no substantive differences in the emotional or communication-related experiences between those with high vs low PTSD scores, but those with higher scores exhibited more distrust of practitioners. CONCLUSIONS AND RELEVANCEIn this cohort study, symptoms of PTSD among family members of ICU patients with COVID-19 were high. Hispanic ethnicity and female gender were associated with higher symptoms. Those with higher scores reported more distrust of practitioners.
Introduction Telephone clinics were adopted for follow-up appointments in our plastic hand surgery department during the COVID-19 pandemic. They may pose advantages in cost, efficiency and environmental impact compared with face-to-face consultations. The aim of this study was to assess the success rate of telephone clinics in hand surgery to determine benefit of continuing the practice. Methods A prospective cohort study of all hand surgery follow-up telephone clinics was conducted over a six-week period. The primary outcome measure was success of the consultation, defined as achieving the same outcome as could have been achieved in a face-to-face clinic. Secondary outcome measures included duration and environmental impact. Results During the study period, 177 consultations were scheduled. Twenty-nine patients (16%) were not contactable. Of the remaining 148 consultations, 111 (75%) had a successful outcome. The highest success rate (85%) was achieved for first postoperative consultations when the patient had already received hand therapy. On average, consultations lasted 8 minutes but required an additional 16 minutes of preparation, documentation and administrative work. An estimated 5,939km of patient travel (1.25 tonnes of carbon dioxide emissions) were saved during the study period. Conclusions The rate of successful outcomes following telephone consultation in our cohort of patients was lower than for face-to-face clinics. However, the service was set up with little time for preparation. The success rate and duration could be improved with appropriate patient selection, especially for those who have undergone straightforward operative procedures. The duration of consultations and the ‘did not attend’ rate should reduce as administrative processes improve.
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