Associations of Patient and Parent Characteristics With Parental Decision Regret in the PICU: A Secondary Analysis of the 2015-2017 Navigate Randomized Comparative Trial.

OBJECTIVES: To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity. DESIGN: Secondary analysis of the Navigate randomized comparative trial (NCT02333396). SETTING: Two tertiary, academic PICUs. PATIENTS: Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 (sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively). CONCLUSIONS: Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret.

Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset.

OBJECTIVES: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. DESIGN: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). SETTING: Two university-affiliated PICUs in the Midwestern United States as part of an RCT. PATIENTS: Two hundred twenty-four parents of 190 PICU patients. INTERVENTIONS: In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports"). MEASUREMENTS AND MAIN RESULTS: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. CONCLUSIONS: This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.

Flattening Hierarchical Structures to Empower Women Trainee Leaders on Social Media Teams.

We share our experience empowering women trainees and leadership through a flattened hierarchical social media team structure with supporting evidence from measurable outcomes.

Navigating the uncertainty of precision cancer screening: The role of shared decision-making.

Objective: Describe how applying a shared decision making (SDM) lens to the implementation of new technologies can improve patient-centeredness. Methods: This paper argues that the emergence of polygenic risk scores (PRS) for cancer screening presents an illustrative opportunity to include SDM when novel technologies enter clinical care. Results: PRS are novel tools that indicate an individual's genetic risk of a given disease relative to the population. PRS are anticipated to help identify individuals most and least likely to benefit from screening. However, PRS have several types of uncertainty, including validity across populations, disparate computational methods, and inclusion of different genomic data across laboratories. Conclusion: Implementing SDM alongside new technologies could prove useful for their ethical and patient-centered utilization. SDM's importance as an approach to decision-making will not diminish, as evidence, uncertainty, and patient values will remain intrinsic to the art and science of clinical care. Innovation: SDM can help providers and patients navigate the considerable uncertainty inherent in implementing new technologies, enabling decision-making based on existing evidence and patient values.

Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

PURPOSE: For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs. METHODS: Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs. RESULTS: Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority. CONCLUSION: Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

Perceived benefits and barriers to implementing precision preventive care: Results of a national physician survey.

Polygenic risk scores (PRS) may improve risk-stratification in preventive care. Their clinical implementation will depend on primary care physicians' (PCPs) uptake. We surveyed PCPs in a national physician database about the perceived clinical utility, benefits, and barriers to the use of PRS in preventive care. Among 367 respondents (participation rate 96.3%), mean (SD) age was 54.9 (12.9) years, 137 (37.3%) were female, and mean (SD) time since medical school graduation was 27.2 (13.3) years. Respondents reported greater perceived utility for more clinical action (e.g., earlier or more intensive screening, preventive medications, or lifestyle modification) for patients with high-risk PRS than for delayed or discontinued prevention actions for low-risk patients (p < 0.001). Respondents most often chose out-of-pocket costs (48%), lack of clinical guidelines (24%), and insurance discrimination concerns (22%) as extreme barriers. Latent class analysis identified 3 subclasses of respondents. Skeptics (n = 83, 22.6%) endorsed less agreement with individual clinical utilities, saw patient anxiety and insurance discrimination as significant barriers, and agreed less often that PRS could help patients make better health decisions. Learners (n = 134, 36.5%) and enthusiasts (n = 150, 40.9%) expressed similar levels of agreement that PRS had utility for preventive actions and that PRS could be useful for patient decision-making. Compared with enthusiasts, however, learners perceived greater barriers to the clinical use of PRS. Overall results suggest that PCPs generally endorse using PRS to guide medical decision-making about preventive care, and barriers identified suggest interventions to address their needs and concerns.

Comprehensive Implementation of Shared Decision Making in a Neuromedical Center Using the SHARE TO CARE Program.

Purpose: SHARE TO CARE (S2C) is a comprehensive, multi-module implementation program for shared decision making (SDM). It is currently applied at the University Hospital Schleswig-Holstein in Kiel, Germany, and among general practitioners at the Federal State of Bremen. This study examines the results of the full implementation of S2C in terms of effectiveness within the Kiel Neuromedical Center comprising the departments of neurology and neurosurgery. Method and Design: The S2C program consists of four combined intervention modules: 1) multimodal training of physicians; 2) a patient activation campaign including the ASK-3 method; 3) digital evidence-based patient decision aids; and 4) SDM support by nurses, e.g., as decision coaches. The SDM level before and immediately after implementation was retrospectively assessed in consecutively selected patients on the subscale "Patient Decision Making" of the Perceived Involvement in Care Scale (PICSPDM). Mean scores were compared with t-tests. Results: Eighty-nine percent of all physicians (N = 56) completed the SDM training. We developed a total of 12 evidence-based digital decision aids in the center, educated two decision coaches to support patients' decision processes by using decision aids. Physicians adjusted patients' pathways to incorporate the use of decision aids. Patients (n = 261) reported a significant increase in participation (p<0.001; Hedges' g = 0.49) in medical decision making. Conclusion: The S2C program has been successfully implemented within the entire Neuromedical Center. Patients reported a medium to small increase of perceived involvement in decision making demonstrating the effectiveness of the implementation. For future research, it might be interesting to investigate the sustainability of the effects of S2C. In addition, it seems useful to complement the patient-based evaluation with observer-based data.

Antecedents to COVID-19 vaccine uptake among patients and employees in the Veterans Health Administration.

The present study sought to understand the antecedents to COVID-19 vaccination among those reporting a change in vaccine intention in order to improve COVID-19 vaccine uptake in the United States. We employed semi-structured interviews and one focus group discussion with vaccinated and unvaccinated Veterans Health Administration (VHA) employees and Veterans at three Veterans' Affairs medical centers between January and June 2021. A subset of these participants (n=21) self-reported a change in COVID-19 vaccine intention and were selected for additional analysis. We combined thematic analysis using the 5C scale (confidence, collective responsibility, complacency, calculation, constraints) as our theoretical framework with a constant comparative method from codes based on the SAGE Working Group on Vaccine Hesitancy. We generated 13 themes distributed across the 5C constructs that appeared to be associated with a change in COVID-19 vaccine intention. Themes included a trusted family member, friend or colleague in a healthcare field, a trusted healthcare professional, distrust of government or politics (confidence); duty to family and protection of others (collective responsibility); perceived health status and normative beliefs (complacency); perceived vaccine safety, perceived risk-benefit, and orientation towards deliberation (calculation); and ease of process (constraints). Key factors in promoting vaccine uptake included a desire to protect family; and conversations with as key factors in promoting vaccine uptake. Constructs from the 5C scale are useful in understanding intrapersonal changes in vaccine intentions over time, which may help public health practitioners improve future vaccine uptake.

In this study of the Veteran and VA employee population, we aimed to understand what factors led to a decision to receive a COVID-19 vaccine. As part of a quality improvement project, we interviewed individuals at three Veterans' Affairs sites in the first six months of 2021. We then used a smaller sample of 21 participants who reported a change in their intentions to receive a COVID-19 vaccine to analyze for this study. This analysis utilizes constructs from the 5C scale, which was developed to understand the conditions required for an individual to decide to receive a vaccine (confidence, collective responsibility, complacency, calculation, constraints). The coding process revealed a number of recurring themes across the interviews falling under each of the five constructs, but concepts relating to vaccine confidence (i.e., level of trust in those developing and disseminating the vaccine) were most common, and constraints (i.e., psychological and structural barriers that stand in the way of vaccination) appeared least frequently in our interviews. We found that significant motivators to receive the vaccine included a desire to protect family and conversations with trusted clinicians, particularly mental healthcare providers. Our study was unique in using the 5Cs to understand changes in vaccine changes over time. Findings show that change in vaccine attitudes is possible even in the presence of concerns and shed light on approaches that public health providers could use to improve vaccine and booster rates.

Promoting Whole Health and Well-Being at Home: Veteran and Provider Perspectives on the Impact of Tele-Whole Health Services.

Background: The Veterans Health Administration (VA) is undergoing a transformation in how healthcare is organized and provided. This transformation to a Whole Health System of Care encompasses the integration of complementary and integrative health services, education, and Whole Health coaching to develop Veterans' self-care skills. During the COVID-19 pandemic, these services were provided via telehealth (tele-WH). Objective: We sought to understand Veteran and provider perspectives on how tele-WH impacts Veteran engagement in Whole Health-aligned services and the impact on their well-being. Methods: Semi-structured interviews were conducted with 51 providers who delivered tele-WH at 10 VA Medical Centers (VAMCs) and 19 Veterans receiving tele-WH at 6 VAMCs. Participants were asked about their experiences with tele-WH, what they perceived to be the impact of tele-WH on Veterans, and their preferences moving forward. Interviews were transcribed, and a content analysis was performed using a rapid approach. Results: We identified 3 major themes that describe the perceived impact of tele-WH on Veterans. These include: (1) increased use of Whole Health-aligned services; (2) deeper engagement with Whole-Health aligned services; and (3) improvements in social, psychological, and physical well-being. Conclusion: Tele-WH is perceived to be a strong complement to in-person services and is a promising mechanism for improving engagement with Whole Health-aligned services and promoting Veteran well-being. Future research is needed to measure outcomes identified in this study and to support more equitable access to telehealth for all.

Sustainability of large-scale implementation of shared decision making with the SHARE TO CARE program.

Introduction: SHARE TO CARE (S2C) is a comprehensive implementation program for shared decision making (SDM). It is run at the University Hospital Schleswig-Holstein (UKSH) in Kiel, Germany, and consists of four combined intervention modules addressing healthcare professionals and patients: (1) multimodal training of physicians (2) patient activation campaign including the ASK3 method, (3) online evidence-based patient decision aids (4) SDM support by nurses. This study examines the sustainability of the hospital wide SDM implementation by means of the Neuromedical Center comprising the Departments of Neurology and Neurosurgery. Methods: Between 2018 and 2020, the S2C program was applied initially within the Neuromedical Center: We implemented the patient activation campaign, trained 89% of physicians (N = 56), developed 12 patient decision aids and educated two decision coaches. Physicians adjusted the patients' pathways to facilitate the use of decision aids. To maintain the initial implementation, the departments took care that new staff members received training and decision aids were updated. The patient activation campaign was continued. To determine the sustainability of the initial intervention, the SDM level after a maintenance phase of 6-18 months was compared to the baseline level before implementation. Therefore, in- and outpatients received a questionnaire via mail after discharge. The primary endpoint was the "Patient Decision Making" subscale of the Perceived Involvement in Care Scale (PICSPDM). Secondary endpoints were an additional scale measuring SDM (CollaboRATE), and the PrepDM scale, which determines patients' perceived health literacy while preparing for decision making. Mean scale scores were compared using t-tests. Results: Patients reported a significantly increased SDM level (PICSPDM p = 0.02; Hedges' g = 0.33; CollaboRATE p = 0.05; Hedges' g = 0.26) and improved preparation for decision making (PrepDM p = 0.001; Hedges' g = 0.34) 6-18 months after initial implementation of S2C. Discussion: The S2C program demonstrated its sustainability within the Neuromedical Center at UKSH Kiel in terms of increased SDM and health literacy. Maintaining the SDM implementation required a fraction of the initial intensity. The departments took on the responsibility for maintenance. Meanwhile, an additional health insurance-based reimbursement for S2C secures the continued application of the program. Conclusion: SHARE TO CARE promises to be suitable for long-lasting implementation of SDM in hospitals.

Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer.

BACKGROUND: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. METHODS: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. RESULTS: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. CONCLUSIONS: Future work is needed to determine SWs'/chaplains' contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains.

"It All Depends": Patient and Decision Partner Experiences in Cancer Clinical Trial Decision-Making.

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.

A coordinated strategy to develop and distribute infographics addressing COVID-19 vaccine hesitancy and misinformation.

BACKGROUND: Visual communication strategies are becoming increasingly prevalent for conveying information to health professionals as well as to the general public. The potential of social media for rapid knowledge dissemination using infographics was recognized early in the coronavirus disease (COVID-19) pandemic by health professionals. OBJECTIVE: The purpose of this study was to describe a coalition of health professionals' approach to developing infographics about COVID-19 vaccines and the reach and engagement of those infographics when shared through social media. METHODS: Infographics were created by a core team within the coalition following a stepwise approach. Each underwent a multistep review process, readability evaluation, and translation into Spanish. Infographics were then shared through multiple social media platforms. They were grouped into 1 of 3 categories for this analysis: COVID-19 vaccine series, myth debunkers, or other. RESULTS: All infographics had greater outreach, impressions, and engagement on Twitter than they did on other platforms. When comparing the 3 groups, no 1 infographic type was consistently performing higher than the others. CONCLUSION: Each infographic reached thousands to tens of thousands of people. We do not know whether those who viewed these infographics changed their perspective on vaccination, so we are unable to draw a conclusion about their impact on vaccine hesitancy based on this study alone.

Attitudes and Intentions of US Veterans Regarding COVID-19 Vaccination.

Importance: Compared with the general population, veterans are at high risk for COVID-19 and have a complex relationship with the government. This potentially affects their attitudes toward receiving COVID-19 vaccines. Objective: To assess veterans' attitudes toward and intentions to receive COVID-19 vaccines. Design, Setting, and Participants: This cross-sectional web-based survey study used data from the Department of Veterans Affairs (VA) Survey of Healthcare Experiences of Patients' Veterans Insight Panel, fielded between March 12 and 28, 2021. Of 3420 veterans who were sent a link to complete a 58-item web-based survey, 1178 veterans (34%) completed the survey. Data were analyzed from April 1 to August 25, 2021. Exposures: Veterans eligible for COVID-19 vaccines. Main Outcomes and Measures: The outcomes of interest were veterans' experiences with COVID-19, vaccination status and intention groups, reasons for receiving or not receiving a vaccine, self-reported health status, and trusted and preferred sources of information about COVID-19 vaccines. Reasons for not getting vaccinated were classified into categories of vaccine deliberation, dissent, distrust, indifference, skepticism, and policy and processes. Results: Among 1178 respondents, 974 (83%) were men, 130 (11%) were women, and 141 (12%) were transgender or nonbinary; 58 respondents (5%) were Black, 54 veterans (5%) were Hispanic or Latino, and 987 veterans (84%) were non-Hispanic White. The mean (SD) age of respondents was 66.7 (10.1) years. A total of 817 respondents (71%) self-reported being vaccinated against COVID-19. Of 339 respondents (29%) who were not vaccinated, those unsure of getting vaccinated were more likely to report fair or poor overall health (32 respondents [43%]) and mental health (33 respondents [44%]) than other nonvaccinated groups (overall health: range, 20%-32%; mental health: range, 18%-40%). Top reasons for not being vaccinated were skepticism (120 respondents [36%] were concerned about side effects; 65 respondents [20%] preferred using few medications; 63 respondents [19%] preferred gaining natural immunity), deliberation (74 respondents [22%] preferred to wait because vaccine is new), and distrust (61 respondents [18%] did not trust the health care system). Among respondents who were vaccinated, preventing oneself from getting sick (462 respondents [57%]) and contributing to the end of the COVID-19 pandemic (453 respondents [56%]) were top reasons for getting vaccinated. All veterans reported the VA as 1 of their top trusted sources of information. The proportion of respondents trusting their VA health care practitioner as a source of vaccine information was higher among those unsure about vaccination compared with those who indicated they would definitely not or probably not get vaccinated (18 respondents [26%] vs 15 respondents [15%]). There were no significant associations between vaccine intention groups and age (χ24 = 5.90; P = .21) or gender (χ22 = 3.99; P = .14). Conclusions and Relevance: These findings provide information needed to develop trusted messages used in conversations between VA health care practitioners and veterans addressing specific vaccine hesitancy reasons, as well as those in worse health. Conversations need to emphasize societal reasons for getting vaccinated and benefits to one's own health.

Vaccine hesitancy as an opportunity for engagement: A rapid qualitative study of patients and employees in the U.S. Veterans Affairs healthcare system.

Although COVID-19 vaccines have been available to many U.S. Veterans Affairs (VA) healthcare system employees and Veteran patients since early 2021, vaccine receipt data indicates some groups are not receiving them. Our objective was to conduct a rapid qualitative assessment of Veterans' and VA employees' views on COVID-19 vaccination to inform clinical leaders' ongoing efforts to increase vaccine uptake across the VA. We employed semi-structured interviews and a focus group involving employees and Veterans as part of a quality improvement project between January and June 2021 at three VA medical centers. Thirty-one employees and 27 Veterans participated in semi-structured interviews; 5 Veterans from a national stakeholder organization participated in a focus group. Data were analyzed using directed content analysis, involving an a priori coding framework comprised of four domains with subcodes under each: contextual influences, barriers and facilitators, vaccine-specific issues, and VA/military experiences. We then classified initial codes into five categories of hesitancy: vaccine deliberation, dissent, distrust, indifference and skepticism. A subset of Veterans (n = 14) and employees (n = 8) identified as vaccine hesitant. Vaccine hesitancy categories were represented by subcodes of religion, culture, gender or socio-economic factors, perceptions of politics and policies, role of healthcare providers, and historical influences; (contextual influences); knowledge or awareness of vaccines, perceived susceptibility to COVID-19, and beliefs and attitudes about health and illness (barriers and facilitators); vaccine development process (vaccine-specific issues) and military experiences (VA/military factors). Facilitators involved talking with trusted others, ease of vaccine access, and perceptions of family and societal benefits of vaccines. Vaccine hesitancy is multi-faceted and likely requires multiple strategies for engaging in conversations to address Veteran and VA employee concerns. Messages should involve patient-centered communication strategies delivered by trusted healthcare providers and peers and should focus on addressing expected benefits for family, friends, and society.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

Attitudes and practices about fertility preservation discussions among young adults with cancer treated at a comprehensive cancer center: patient and oncologist perspectives.

BACKGROUND: Young adults (YAs, ages 18-39) diagnosed with cancer face multiple challenges that affect their health-related quality of life, including the potential for cancer-related infertility. Providing information about the risk of infertility and options to maintain fertility is critical for YAs who are newly diagnosed. However, barriers to effective communication exist for oncologists and their patients. The purpose of this study was to interview medical oncologists and YAs from the same cancer center to examine attitudes and practices about fertility preservation. METHODS: Semi-structured interviews were conducted with medical oncologists (N=12) and YAs within 2 years post-treatment (N=24), representing the most common cancers affecting YAs. Interviews were audio-recorded, transcribed, and coded using qualitative methodologies with the analysis software NVivo 10. RESULTS: Twelve oncologists (50% female, 67% <50 years) and 24 YAs (67% female, M=29 years) completed interviews. Common themes across oncologist and YA interviews were the roles of cancer type or stage and patient interest or parity in influencing the decision. The most important factor for YAs was to receive accurate, in-depth information. Unique themes for oncologists focused on clinical aspects of their patient's disease. For YAs, they shared about the emotional impact of cancer-related infertility and desire for support from trusted others. CONCLUSIONS: Results provide a better understanding of the attitudes and practices about fertility preservation discussions among YAs. Given the common factors affecting fertility preservation decisions, models of shared decision-making may be ideal for YAs and oncologists. Future interventions should explore tailored applications of this approach for YAs newly diagnosed with cancer.

A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention.

OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure. DESIGN: Patient-level, randomized trial. SETTING: Two university-based, tertiary-care children's hospital PICUs. PARTICIPANTS: Parents of patients requiring more than 24 hours in the PICU. INTERVENTIONS: PICU Supports included adding a trained navigator to the patient's healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers. MEASUREMENTS AND MAIN RESULTS: The primary outcome was percentage of "excellent" responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3-5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3-5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; SE, 4.53; 95% CI, -5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as "extremely" or "somewhat" helpful. CONCLUSIONS: Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.

Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study.

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implementing a PICU communication intervention called PICU Supports, and to assess families' and health care teams' perceptions of the intervention. METHODS: This study involved patients requiring more than 24 hours of PICU care. An interventionist trained in PICU-focused health care navigation, a "navigator," met with parents and the health care team to discuss communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and checked in with parents after PICU discharge. The feasibility of implementing the intervention was assessed by tracking navigator activities. Health care team and family perceptions were assessed using surveys, interviews, and focus groups. RESULTS: Of 53 families approached about the study, 35 (66%) agreed to participate. The navigator met with parents on 71% and the health care team on 85% of possible weekdays, and completed 86% of the postdischarge check-ins. Family meetings were offered to 95% of eligible patients. The intervention was rated as helpful by 97% of parents, and comments during interviews were positive. CONCLUSIONS: The PICU Supports intervention is feasible to implement and study and is viewed favorably by parents.