IntroductionFor people with Parkinson’s disease (PD), deciding whether to pursue deep brain stimulation (DBS) has become increasingly complex. Evidence suggests current approaches to collaborative decision-making may fall short of accepted standards. Thus, a decision support intervention, such as a patient decision aid (PtDA) may be warranted. PtDAs have been shown to improve patients’ knowledge, expectations, and participation in decision-making for other, similar healthcare decisions. We therefore sought to assess neurologists’ awareness of, and experience using, PtDAs, and to solicit their opinions on the ideal features of a PtDA for PD patients considering DBS.MethodsSixteen United States-based neurology clinicians were interviewed about their experiences in treating and counseling PD patients considering DBS. These semi-structured interviews were analyzed using qualitative content analysis.ResultsSeven general neurologists, eight movement disorders specialists, and one registered nurse in a movement practice participated in interviews. None of the clinicians had experience using a patient decision aid, and many were unfamiliar with the concept altogether. All largely expressed optimism about the potential utility of a PtDA for PD patients considering DBS. There was less consensus about the ideal format, content, and implementation of such a PtDA.ConclusionHealthcare providers recognize the potential benefits of a PtDA to engage PD patients considering DBS. However, input from other stakeholders—particularly the patients themselves—is essential to validate these findings.

Introduction:The chronic failure to significantly increase the number of underrepresented minorities (URM) in medicine requires that we look for new mechanisms for channelling URM students through pre-medical education and into medical school. One potential mechanism is medical scribing, which involves a person helping a physician engage in real-time documentation in the electronic medical record.Methods:As a precursor to evaluating this mechanism, this survey pilot study explored individuals' experiences working as a medical scribe to look for any differences related to URM status. Of 248 scribes, 159 (64% response rate) completed an online survey. The survey was comprised of 11 items: demographics (4 items), role and length of time spent as a scribe (2 items), and experience working as a scribe (5 items).Results:The vast majority (>80%) of participants reported that working as a medical scribe gave them useful insight into being a clinician, provided valuable mentoring, and reinforced their commitment to pursue a career in medicine. The experiences reported by scribes who identified as URM did not differ from those reported by their majority counterparts.Discussion:It remains to be seen whether medical scribing can serve as an effective pipeline for URM individuals to matriculate into medical school. But the present findings suggest that the experience of working as a medical scribe is a positive one for URM.

When patients lose decision-making capacity, others must make surrogate decisions on their behalf. What counts as a surrogate decision might seem self-evident. But as clinician-researchers in the field of advance care planning, we have found that it is not always so clear-cut. In this paper, we describe how and why this is a matter of concern, a novel approach for assessing whether a surrogate decision occurred, and findings from this assessment.

BackgroundDespite the widespread use of humor in social interactions and the considerable literature on humor in multiple fields of study, the use of humor in parenting has received very little formal study. The purpose of this pilot study was to gather preliminary data on the use of humor in the raising of children.Materials and methodsWe developed and administered a 10-item survey to measure people's experiences being raised with humor and their views regarding humor as a parenting tool. Responses were aggregated into Disagree, Indeterminate, and Agree, and analyzed using standard statistical methods.ResultsRespondents (n = 312) predominantly identified as male (63.6%) and white (76.6%) and were (by selection) between the ages of 18-45 years old. The majority of participants reported that they: were raised by people who used humor in their parenting (55.2%); believe humor can be an effective parenting tool (71.8%) and in that capacity has more potential benefit than harm (63.3%); either use (or plan to use) humor in parenting their own children (61.8%); and would value a course on how to utilize humor in parenting (69.7%). Significant correlations were found between the use of humor and both i) the quality of respondents' relationships with their parents and ii) assessments of how good a job their parents had done.ConclusionsIn this pilot study, respondents of childbearing/rearing age reported positive views about humor as a parenting tool.

Abstract Introduction: iLookOut, a web-based child abuse training for early childcare professionals (ECPs), has been shown to improve knowledge and attitudes related to correctly identifying and reporting suspected cases of child abuse. The overarching goal of the present study is to examine “what works for whom” for iLookOut in order to identify strategies for optimizing learner outcomes. Methods: This prospective study enrolled 12,705 ECPs who completed iLookOut (November 2014–December 2018). We used structural equation models to test whether learner demographic and professional characteristics were differentially associated with implementation outcomes (i.e., acceptability and appropriateness) and whether these mediated subsequent indicators of training effectiveness (i.e., gains in knowledge). Results: Consistent with previous research, individuals with lower baseline knowledge scores showed greater knowledge gains (β = −.57; p < .001). Greater knowledge gains were seen for learners who reported higher acceptability (β = .08; p < .001) or appropriateness (β = .14; p < .001). Implementation outcomes strongly associated with knowledge gains included acceptability for female learners and appropriateness for learners who had not completed high school or had >15 years of experience in childcare settings. Where mediation was found, for the majority of groups, appropriateness emerged as the driving mediator. Conclusion: Implementation outcomes emerged as important drivers of knowledge change for most groups. The iLookOut Core Training’s use of a multimedia learning environment, video-based storylines, and game-based techniques were endorsed by learners and correlated with increases in knowledge. Future work should explore why aspects of the iLookOut training are rated as less acceptable or appropriate by some groups and what changes would improve efficacy for low performing learners.

Context. Advance Care Planning (ACP) has fallen under scrutiny primarily because research has not consistently demon-strated patient-focused benefits.Objectives. To better understand how spokespersons regard, engage with, and find value in ACP during decision-making for their loved ones.Methods. This qualitative analysis was part of a randomized controlled trial involving spokespersons of patients with advanced illness who had completed ACP. After making a medical decision on behalf of their loved one (or that loved one's death), semi-structured interviews explored spokespersons' experience of decision-making and if (and how) ACP played a role. Thematic analysis was conducted on interview transcripts.Results. From 120 interviews, five themes emerged: 1) Written advance directives (ADs) helped increase spokespersons' con-fidence that decisions were aligned with patient wishes (serving as a physical reminder of previous discussions and increasing clarity during decision-making and family conflict); 2) Iterative discussions involving ACP facilitated "In the moment" decision-making; 3) ADs and ACP conversations helped spokespersons feel more prepared for future decisions; 4) Spokespersons some -times felt there was "no choice" regarding their loved one's medical care; and 5) Regrets and second-guessing were the most common negative emotions experienced by spokespersons.Conclusion. Considering the recent debate about the utility of ACP and ADs, this analysis highlights the value of ACP for spokespersons involved in surrogate decision-making. Reframing the goals of ACP in terms of their benefit for spokespersons (and identifying appropriate outcome measures) may provide additional perspective on the utility of ACP. J Pain Symptom Manage 2023;65:471-478. (c) 2023 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.

The purpose of this study was to determine whether statutory wording of child maltreatment mandated reporting legislation was associated with reporting patterns and substantiation of abuse across U.S. states and territories. Annual state averages for total referrals, referrals screened-out, referrals screened-in, referrals substantiated, and child population (all children in the U.S.; annual average = 74,457,928) were obtained from the 2010-2017 Child Maltreatment Reports. Odds ratios were calculated for: (1) two major statutory language frameworks (suspicion versus belief), (2) seven sub-categories (e.g., suspect, reasonably believe, etc.), and (3) universal mandated reporting (yes versus no). Use of suspicion (versus belief) was associated with higher rates of referrals made (OR = 1.13) and screened-in (OR = 1.13), but lower substantiation rates (OR = .92). States using universal mandated reporting (versus those who did not) had slightly lower rates of referrals (OR = .99), but higher rates of referrals screened-in (OR = 1.16) and substantiated (OR = 1.06). Differences in statutory wording are associated with variability in reports, suggesting the possibility that statutory wording is one factor involved with these differences. However, future research is needed to explore alternative contributing factors and/or explanations.

Advance care planning (ACP) is a process involving conversations between patients, loved ones, and healthcare providers that consider patient preferences for the types of medical therapies received at the end of life. Underserved populations, including Black, Hispanic, rural, and low-income communities are less likely to engage in ACP than other communities, a health inequity that results in lower-quality care and reduced hospice utilization. The purpose of this trial is to compare efficacy of two interventions intended to motivate ACP (particularly advance directive completion) for those living in underserved communities. This 3-armed cluster, randomized controlled mixed methods design is being conducted in 75 community venues in underserved communities across the USA. The goal of the trial is to compare the efficacy of two interventions at motivating ACP. Arm 1 uses an end-of-life conversation game (Hello); Arm 2 uses a nationally utilized workshop format for ACP conversations (The Conversation Project); and Arm 3 uses an attention control game (TableTopics). Events are held in partnership with 75 local community-based host organizations and will involve 1500 participants (n=20 per event). The primary outcome is completion of a visually verified advance directive at 6 months post-event. Primary analyses compare efficacy of each intervention to each other and the control arm. Secondary mixed methods outcomes include (a) other ACP behaviors and engagement; (b) communication quality; (c) impact of sociocultural environment on ACP (via qualitative interviews); and (d) implementation and sustainability. Subgroup analyses examine outcomes for Black, Hispanic, and rural groups in particular. This trial will add to the evidence base behind various conversational ACP interventions, examine potential mechanisms of action for such interventions, and provide qualitative data to better understand the sociocultural environment of how community-based ACP interventions are experienced by underserved populations. Results will also provide important data for future researchers to learn whether visual verification of advance directives is necessary or whether reliance on self-reported outcomes is of comparable value. Data from this study will inform ways to effectively motivate underserved communities to participate in advance care planning. ClinicalTrials.gov NCT04612738. Registered on October 12, 2020. All information from the WHO Trial Registration Data Set can be found within the protocol.

Communication Quality Analysis (CQA) is a rigorous transcript-based coding method for assessing clinical communication quality. We compared the resource-intensive transcript-based version with a streamlined real-time version of the method with respect to feasibility, validity, reliability, and association with traditional measures of communication quality. Simulated conversations between 108 trainees and 12 standardized patients were assessed by 7 coders using the two versions of CQA (transcript and realtime). Participants also completed two traditional communication quality assessment measures. Real-time CQA was feasible and yielded fair to excellent reliability, with some caveats that can be addressed in future work. CQA ratings were moderately correlated with traditional measures of communication quality, suggesting that CQA captures different aspects of communication quality than do traditional measures. Finally, CQA did not exhibit the ceiling effects observed in the traditional measures of communication quality. We conclude that real-time CQA is a user-friendly method for assessing communication quality that has the potential for broad application in training, research, and intervention contexts and may offer improvements to traditional, self-rated communication measures.

Importance The value of advance care planning (ACP) has been the subject of recent debate because of mixed findings. This may be, in part, because trials presume that researchers and patient spokespersons share the same understanding of the role of a surrogate decision-maker. We explored how patient surrogates conceptualized and defined surrogate decision-making vs patient advocacy. Understanding how surrogates perceive their role in decision-making is important to avoid misinterpreting the effectiveness of ACP interventions. Objective To understand how patient spokespersons distinguish surrogate decision-making from patient advocacy. Design, Setting, and Participants This qualitative thematic analysis of a subsample of participants from a randomized clinical trial at a tertiary medical center was conducted from September 27, 2012, to June 30, 2021. Participants (n = 36) were the designated spokespersons of adult patients with severe illness who had made a surrogate decision on behalf of the patient since the last follow-up. Analysis was performed from March 21, 2021, to February 7, 2022. Main Outcomes and Measures Semistructured interviews examined how patient spokespersons conceptualize differences between surrogate decision-making and advocacy. Results The study included 36 patient spokespersons (32 women [88.9%]; mean [SD] age, 62.1 [11.8] years) and found substantial variability in how the spokespersons conceptualized what it means to make a surrogate decision for another. A total of 10 spokespersons (27.8%) did not distinguish surrogate decision-making from advocacy. There were 5 definitions for both surrogate decision-making and advocacy. The 3 most common definitions of surrogate decision-making were (1) acting as the final decision-maker (18 [50.0%]), (2) doing what is best for the patient (8 [22.2%]), and (3) making decisions on behalf of patients so that their wishes are respected (6 [16.7%]). The 3 most common definitions of advocacy were (1) doing what is best for the patient (8 [22.2%]), (2) respecting patients’ wishes (6 [16.7%]), and (3) providing support to the patient (6 [16.7%]). The most common pairing of definitions by an individual spokesperson involved defining surrogate decision-making as being the final decision-maker, and defining advocacy as acting in the best interest of the patient (6 [16.7%]). Conclusions and Relevance This qualitative study found that many spokespersons perceive their roles as surrogate decision-makers differently than clinicians and researchers likely do, often conflating surrogacy with advocacy. These findings may help explain why researchers have found that ACP does not consistently improve traditional outcomes. If spokespersons do not distinguish surrogate decision-making from advocacy, then what is being reported by spokespersons and measured by clinicians and researchers may not accurately reflect the true association of ACP with outcomes.

Introduction: Despite its prominence in psychology, little is known about how personality traits play a role in the stress experiences of surrogate decision-makers. We tested the hypothesis that intrinsic traits (personality and decision-making styles) would be related to surrogates' stress in order to learn whether screening or tailoring interventions based on personality traits could help support surrogate decision-makers. Methods: This pre-specified secondary analysis evaluated data from an interventional study with dyads of patients with advanced chronic illness and their spokespersons. Measures included stress after decision-making or patient death (Impact of Events-Revised), personality (Big Five Index; BFI) and decision-making style (maximization and regret scales). Multivariate linear regressions explored the impact of personality on the stress experience; linear regressions independently modeled the impact of maximization and regret on the stress experience. Results: Of 38 spokespersons, 89.5% were women, 97.4% non-Hispanic, and 29.0% had a college degree or higher. In univariate analyses, total stress was correlated with neuroticism (r = .56, P < .01), higher scores on the regret (r = .55, P < .01) and maximization (r = .48, P < .05). In adjusted models, BFI was significantly associated with total stress (R-2 = 27.08, P = .02). However, only neuroticism was independently associated with total stress. Conclusions: Personality traits, particularly neuroticism, and decision-making styles predicted heightened stress in spokespersons of patients with advanced chronic illness. If ACP interventions are intended to reduce spokesperson stress, personality and decision-making style scales may help identify spokespersons most likely to benefit from ACP interventions.

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.

Knowledge tests used to evaluate child protection training program effectiveness for early childhood education providers may suffer from threats to construct validity given the contextual variability inherent within state-specific regulations around mandated reporting requirements. Unfortunately, guidance on instrument revision that accounts for such state-specific mandated reporting requirements is lacking across research on evaluation practices. This study, therefore, explored how collection and integration of validity evidence using a mixed methods framework can guide the instrument revision process to arrive at a more valid program outcome measure.

BACKGROUND:Underserved and minority populations are often reluctant to engage in advance care planning and/or research often due to distrust in healthcare and/or research institutions.AIM:To determine if use of a community-based delivery model can facilitate recruitment of individuals from underserved communities in research about advance care planning.DESIGN:Recruitment data are presented from a prospective, mixed methods observational cohort study that examined the feasibility and preliminary efficacy of a community-based delivery model involving an end-of-life conversation game to motivate participants to complete advance care planning behaviors. Event attendance and research participation data are reported.SETTING/PARTICIPANTS:Game events were held in community venues in 27 states across the US in 2018-2019. The model involved leveraging existing social networks to recruit attendees and research participants to community game day events. Attendees were eligible for research if they were adults who read/spoke English.RESULTS:A total of 1,122 individuals attended events at 53 sites. Participants generally reported low income (48% reported $30,000 annual income). At sites with research assistants, there was a 90% consent rate (92% were Black). At community outreach sites, 45% agreed to a follow-up research phone call (49% were Black).CONCLUSIONS:Use of the community-based delivery model successfully engaged undeserved communities in a research-based advance care planning related community outreach event. This model may be useful for overcoming underserved and minority populations' skepticism and distrust of healthcare and research that is a common barrier to progress in health agendas, especially advance care planning.

Background: Internationally, various laws govern reporting of child abuse to child protection services by medical professionals. Whether mandatory reporting laws are in place or not, medical professionals need internal thresholds for suspicion of abuse to even consider a report (“reasonable suspicion” in US law, “gewichtige Anhaltspunkte” in German law). Objective: To compare internal thresholds for suspicion of abuse among US and German pediatricians, i.e., from two countries with and without mandatory reporting laws. Participants and Setting: In Germany, 1581 pediatricians participated in a nationwide survey among child health professionals. In the US, a survey was mailed to all Pennsylvania pediatricians, and 1249 participated. Methods: Both samples were asked how high in their rank order of differential diagnoses child abuse would have to be when confronted with a child’s injuries to qualify for reasonable suspicion/gewichtige Anhaltspunkte (differential diagnosis scale, DDS). In a second step, both had to mark a 10-point likelihood scale (0–100%) corresponding to reasonable suspicion/gewichtige Anhaltspunkte (estimated probability scale, EPS). Results: While for almost two-thirds of German pediatricians (62.4%), child abuse had to be among the top three differential diagnoses for gewichtige Anhaltspunkte, over half of the US respondents (48.1%) had a lower threshold for reasonable suspicion. On the estimated probability scale, over 65% in both samples indicated that the probability of abuse had to exceed 50% for reasonable suspicion/gewichtige Anhaltspunkte. There was great variability between the two countries. Conclusions: There are similar uncertainties in assessing cases of suspected child abuse in different legal systems. There is a need for debates on thresholds among medical professionals in both countries.

PURPOSE:The use of the electronic health record (EHR) has led to physician dissatisfaction, physician burnout, and delays in documentation and billing. Medical scribes can mitigate these unintended consequences by reducing documentation workload and increasing efficiency. OBJECTIVE:To study the effects of medical scribes on time to completion of notes and clinician experience, with a focus on time spent charting during clinic and after-hours. We hypothesized that medical scribes in an outpatient pediatric setting would decrease clinician time spent charting, time to finalize encounter notes, and clinician's perceived documentation time. METHODS:This 15-month single-center observational study was carried out with 3 study periods: pre-scribe, with-scribe, and scribe-withheld. Time spent in EHR was extracted by our EHR vendor. Participants completed surveys regarding time spent documenting. Six clinicians (5 physicians, 1 nurse practitioner) participated in this study to trial the implementation of medical scribes. RESULTS:EHR time data were collected for 4329 patient visits (2232 pre-scribe, 1888 with-scribe, 209 scribe-withheld periods). Comparing pre-scribe versus with-scribe periods, documentation time per patient decreased by 3-minutes 28-seconds per patient (pre-scribe IQR: 6, with-scribe IQR: 3, P = .028); note timeliness decreased from 0.96 days to 0.26 days (pre-scribe IQR: 0.22, with-scribe IQR: 0.11, P = .028); and clinicians' estimates of time spent in the EHR decreased by 1.2 hours per clinic session (pre-scribe IQR: 0.5, with-scribe IQR: 0.5, P = .031). CONCLUSIONS:Medical scribes in an outpatient pediatric setting result in: 1) decreased time spent charting, 2) reduced time to final sign clinic notes, and 3) decrease in clinician's perceived time spent documenting.

Context: Surrogate decision makers experience significant amounts of anxiety, burden, and strain in their role as caregivers and decision makers for loved ones. Objectives: To investigate longitudinally whether surrogate decision makers engaging in ACP together with their loved one reduces perceived anxiety, burden, and strain felt by surrogate decision makers. Methods: Post-hoc analysis of a randomized controlled trial evaluating caregivers’ perceived self-efficacy to serve as surrogate decision makers. The trial employed a 2×2 study design of patient/caregiver dyads who engaged in advance care planning (ACP) using a standard living will form vs “Making Your Wishes Known” (MYWK), and having the patient engage in ACP alone vs together with the family caregiver. Surrogates completed validated survey instruments surveys longitudinally to compare levels of anxiety, burden, and strain. Results: 246 of 285 dyads completed the measures. No significant reductions in anxiety, burden, or strain were found longitudinally in surrogate decision makers using MYWK together with loved one’s vs other control groups. Increases in strain and anxiety were seen across all study groups and increases in burden across 2/4 study groups. Strain and burden increased most in the MYWK Together arm (▴ = +2.22 and ▴ = +1.91 respectively). Conclusion: Family caregivers who engaged in ACP together with patients using the decision support tool MYWK did not experience less strain, burden, or anxiety longitudinally compared to other study arms. These results may help inform the design of future studies and interventions that promote caregivers’ involvement in ACP interventions.

BackgroundDespite being well-positioned to identify maltreatment in the children that they provide care for and being legally required to report suspected child maltreatment, early childhood professionals (ECPs) make a limited proportion of reports to child protective services. It is critical to identify evidence-based interventions to improve the reporting practices of this group of mandated reporters allowing for the better protection of children from maltreatment.ObjectiveThe goal of the present study was to determine if iLookOut, an online child abuse identification and reporting training for ECPs, results in differential gains in knowledge and attitudes towards child abuse and its reporting among ECPs, as compared to an online standard training.Participants and settingBoth interventions were completed online by participants recruited from licensed child care programs in Southern Maine from October 2017 to January 2020. Eligibility criteria included being at least 18 years of age, English-speaking, and working as paid or volunteer staff at a licensed child care program taking care of children 5 years of age or younger. Of the 1152 enrolled individuals, 1094 provided complete pre- and post-intervention data.MethodsA randomized controlled trial comparing iLookOut with an online standard training.ResultsECPs who completed iLookOut significantly outperformed those who completed Standard mandated reporter training in terms of both knowledge (d=1.09 vs. 0.67) and attitudes (d=0.67 vs. 0.54) relative to pre-test scores.ConclusionsiLookOut is a promising candidate for widespread use in meeting the need for evidence-based training on child abuse and its reporting.

Advance care planning (ACP) is defined by the Institute of Medicine as an iterative process that involves discussing end-of-life issues, clarifying relevant values and goals of care, and embodying preferences through written documents and medical orders. ACP is predicated on the principle of respect for autonomy, which recognizes an individual’s right to accept or decline medical therapies. With the development of medical technologies that can sustain life (including mere physiologic existence), effective ACP has become a critical yet underused process for patients, their families, and clinicians. This review discusses the emergence of ACP, promises and pitfalls of advance directives, and promising approaches, including ACP interventions and research, as well as a focus on public engagement and future directions. Figures show a timeline of important advances in ACP since 1990, key features of the comprehensive ACP process, the three core aspects or pillars for implementation of ACP, stages of change for ACP behaviors, and two commercially available end-of-life games. Tables list theoretical pros and cons of advance directives, ACP resources, examples of recent research studies on ACP interventions, types and examples of ACP resources, and public engagement campaigns. This review contains 5 figures, 12 tables, and 101 references Keywords: Advance care planning, advance directive, end-of-life

This article describes the content and pedagogical foundations of iLookOut for Child Abuse, an interactive, online learning program that was designed for early childhood professionals and others who provide childcare to young children. It also describes how an online intervention can address a complex social and behavioral issue--viz., how to identify and appropriately respond to concerns of possible child abuse.