Co-management of communication and care in adolescent and young adult oncology.

BACKGROUND: Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking. METHODS: We performed 37 semistructured interviews with AYAs aged 12-24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care. RESULTS: We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other's emotions. Additionally, we identified five factors that influenced AYAs' roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills. CONCLUSIONS: AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family's unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.

Racial and ethnic disparities in communication study enrollment for young people with cancer: A descriptive analysis of the literature.

OBJECTIVE: We aimed to evaluate the racial and ethnic diversity of study participants in recent pediatric cancer communication literature. METHODS: We systematically searched for communication studies in pediatric oncology published between January 2018 and September 2020, limiting analysis to US studies. We considered race and ethnicity as separate categories in our analysis. Two authors screened studies and abstracted characteristics of race and ethnicity reporting and enrollment. RESULTS: Of 98 articles included in this analysis, many studies failed to report participants' race (21/98) and ethnicity (40/98). Most studies ascertained race and ethnicity by self-report (51/98); 25 studies did not describe how they ascertained race and ethnicity. White participants were overrepresented in studies relative to the US population (median 80% in studies vs 72% in 2020 US census). Racial and ethnic minorities were underrepresented (Black: 7% vs 14%; Asian: 4% vs 7%; Pacific Islander: 0% vs 0.5%; Native American: 0.5% vs 3%; Hispanic 8% vs 19%). CONCLUSION: Communication literature in pediatric oncology underrepresents all racial and ethnic minority populations and is inconsistent in the reporting of race and ethnicity. PRACTICE IMPLICATIONS: Future work should follow best practices to ensure this literature adequately represents the experiences of all families in pediatric oncology.

Interdependent functions of communication with adolescents and young adults in oncology.

BACKGROUND: Communication is central to patient-centered care in adolescent and young adult (AYA) cancer. Previously, we developed a functional communication model from perspectives of parents whose children had cancer. No prior studies have established a framework for the breadth of communication functions in AYA oncology. We aimed to identify these communication functions from AYAs' perspectives. METHODS: Semistructured interviews with 37 AYAs with cancer aged 12-24 years at diagnosis from two pediatric centers during treatment or survivorship. We performed thematic analysis, using a functional communication model as an a priori framework, but remaining open to novel themes. RESULTS: We identified eight interdependent functions of communication in AYA oncology that were consistent with those previously identified among parents: building relationships, exchanging information, enabling family self-management, making decisions, managing uncertainty, responding to emotions, providing validation, and supporting hope. AYAs held varying preferences for engagement in different communication functions. While some AYAs preferred very passive or active roles, most AYAs described an interdependent process of communication involving them, their parents, and their clinicians. Parents often served as a conduit and buffer of communication between the AYA and clinician. CONCLUSIONS: Interviews with AYAs provided evidence for eight interdependent communication functions in AYA oncology. Many AYAs described the integral role of parents in communication regardless of their age. Clinicians can use this framework to better understand and fulfill the communication needs of AYA patients. Future work should aim to measure and intervene upon these functions to improve communication experiences for AYAs with cancer.

Conflicting goals and obligations: Tensions affecting communication in pediatric oncology.

OBJECTIVES: To describe the tensions experienced by clinicians and psychosocial professionals that affect communication in pediatric oncology. METHODS: Ten focus groups with nurses, nurse practitioners, physicians, and psychosocial professionals at 2 US institutions. We analyzed transcripts using thematic analysis, assessing tensions experienced when communicating with parents. RESULTS: We identified 5 themes of tensions, defined as challenges experienced when clinicians and psychosocial professionals are trying to achieve multiple conflicting goals or obligations while communicating: (1) Supporting parental hopes while providing honest opinions and information; (2) disclosing all possible outcomes while avoiding the creation of new worries or uncertainties; (3) building relationships while maintaining personal boundaries; (4) disclosing sensitive information while adhering to professional role and perceived authority; (5) validating parental beliefs or decisions while fulfilling obligation for honesty. Some tensions represented conflicts between different communication goals. Others represented conflicts between a communication goal and another obligation. CONCLUSION: Clinicians and psychosocial professionals experience tensions that affect communication with parents in pediatric oncology. Some tensions might be addressed with interventions or education. Others will require further analysis to provide sufficient guidance to clinicians. PRACTICE IMPLICATIONS: Unaddressed tensions might lead to poor communication and clinician burnout. Future work should explore solutions to these tensions.

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.

Multiple factors can facilitate or impede the fulfillment of communication functions in pediatric cancer. In this systematic review, we evaluated 109 studies from the preceding 20 years that presented qualitative or quantitative evidence of barriers or facilitators to communication in pediatric cancer. Using a multilevel framework developed in our prior study, we then analyzed and categorized the levels of barriers and facilitators identified in included studies. The vast majority of studies focused on individual-level barriers, rather than team, organization/system, collaborating hospital, community, or policy-level barriers. Future studies should explore the full range of factors that affect communication.

Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer.

Effective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor.

Clinicians' Perspectives on the Functions of Communication in Pediatric Oncology.

Background: Parents previously identified eight core functions of communication with clinicians in pediatric oncology. Objective: To determine clinicians' views on communication functions in pediatric oncology. Design: In 10 focus groups with 59 clinicians at two academic centers, we asked open-ended questions about communication goals and purposes. Then we presented definitions of eight communication functions previously described by parents and explored clinicians' perspectives. Setting/Subjects: We performed separate focus groups for nurses, nurse practitioners, physicians, and psychosocial professionals. Measurements: Thematic analysis of focus group transcripts. Results: Clinicians identified six functions in response to open-ended questions. After reviewing the eight functions described by parents, all clinicians agreed with the framework: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, supporting hope, and providing validation. Conclusions: Pediatric oncology clinicians corroborated this functional communication framework. Clinicians and researchers can utilize this framework to guide care and research in the future.

"Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer.

BACKGROUND: Parents and clinicians of children with cancer can provide advice to improve communication that reflects lessons learned through experience. We aimed to identify categories of communication advice offered to parents of children with cancer from clinicians and other parents. PROCEDURE: (1) Semi-structured interviews with 80 parents of children with cancer at three sites; (2) single-item, open-ended survey administered following 10 focus groups with 58 pediatric oncology clinicians at two sites. We asked participants for communication advice to parents, and analyzed responses using semantic content analysis. RESULTS: Parents provided five categories of communication advice to other parents. Advocacy involved asking questions, communicating concerns, and speaking up for the child. Support involved pursuing self-care, seeking and accepting help, and identifying supportive communities. Managing information involved taking and organizing notes, remaining open to difficult truths, and avoiding inaccurate information. Partnership involved establishing open lines of communication with clinicians, making the family's values and priorities known, and trusting the clinical team. Engaging and supporting the child involved, understanding and incorporating the child's preferences and values, and creating a loving environment. Clinicians' advice addressed similar categories, although only one clinician described engaging and supporting the child. Furthermore, parental advice expanded beyond interactions with the clinical team, whereas clinician advice focused more on the role of clinicians. CONCLUSIONS: Parents and clinicians of children with cancer provided five categories of communication advice. With these data, clinicians, health care organizations, support groups, and patient advocates could offer experience-informed advice to parents who are seeking information and support.

Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology.

PURPOSE: Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns. METHODS: Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis. RESULTS: Nearly all parents identified negative communication experiences (n = 76). We identified four categories of contributors to negative experiences: individual (n = 68), team (n = 26), organization (n = 46), and greater health care system (n = 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n = 65), insufficient understanding (n = 48), decreased trust or confidence (n = 37), inconvenience (n = 36), medical harm (n = 23), decreased self-confidence (n = 17), decreased emotional support (n = 13), decreased engagement (n = 9), false hope (n = 9), decreased hope (n = 7), financial insult (n = 7), and decreased access to resources (n = 3). We identified five categories of supportive responses from clinicians: exploring (n = 8), acknowledging (n = 17), informing (n = 27), adapting (n = 27), and advocating (n = 18). Parents often increased their own advocacy on behalf of their child (n = 47). Parents also identified the need for parental engagement in finding solutions (n = 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance. CONCLUSION: Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions.

Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives.

BACKGROUND: Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication. METHODS: The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology. RESULTS: The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers. CONCLUSIONS: Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology. LAY SUMMARY: Clinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.

Parental views on communication between children and clinicians in pediatric oncology: a qualitative study.

PURPOSE: Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication between children and clinicians. We explored parental perspectives to begin understanding this communication. METHODS: Secondary analysis of semi-structured interviews with 80 parents of children with cancer across 3 academic medical centers during treatment, survivorship, or bereavement. We employed semantic content analysis, using the functional model of parental communication as an a priori framework. RESULTS: We identified 6 distinct functions of communication in child-clinician interactions: building relationships, promoting patient engagement, addressing emotions, exchanging information, managing uncertainty, and fostering hope. These communication functions were identified by parents of older (> 13 years old) and younger (< 12 years old) children, although the specific manifestations sometimes differed by age. Notably, age was not always an indicator of the child's communication needs. For example, some parents noted older children who did not want to discuss difficult topics, whereas other parent described younger children who wanted to know every detail. Two functions from the previous parental model of communication were absent from this analysis: supporting family self-management and making decisions. CONCLUSION: Interviews with 80 parents provided evidence for 6 distinct functions of communication between children and clinicians. These functions apply to older and younger children, although specific manifestations might vary by age. This functional model provides a framework to guide clinicians' communication efforts and future communication research.

Decisional burden among parents of children with cancer.

BACKGROUND: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish. METHODS: This was a prospective cohort study of 372 parents of children with cancer and their oncologists at 2 academic pediatric hospitals. Parents were surveyed within 12 weeks of the diagnosis, and they were assessed for associated factors and outcomes of holding a more active decision-making role than they preferred. Parents were asked about their preferred and actual roles in decision making. Oncologists were asked to estimate parental preferences. RESULTS: Most parents preferred to share decision making with the oncologist (64% [236 of 372]); however, 13% (49 of 372) preferred oncologist-led decision making. Most parents fulfilled their ideal decision-making role (66% [244 of 372]), but a notable minority were either more involved (14% [52 of 372]) or less involved than they preferred (20% [76 of 372]; P < .0001 [McNemar test]). Oncologists recognized parents' preferred roles in 49% of cases (167 of 341); 24% (82 of 341) of parents preferred more active roles than the oncologist recognized, and 27% (92 of 341) preferred less active roles than recognized. No parent or communication characteristics were found that were associated with parents' holding a more active role than desired in decision making. Parents who held more active roles in decision making than they wished had higher odds of decisional regret (odds ratio, 3.75; 95% confidence interval, 2.07-6.80; P < .0001). CONCLUSIONS: Although many parents fulfill their desired roles in decision making about their child's cancer, some are asked to take on more active roles than they wish. Holding a more active role than desired may lead to increased decisional regret.

The Critical Portions of Carpal Tunnel Release, Ulnar Nerve Transposition, and Open Reduction and Internal Fixation of the Distal Part of the Radius.

BACKGROUND: Overlapping surgery is attracting increased scrutiny. The American College of Surgeons states that the attending surgeon must be present for all critical portions of a surgical procedure; however, critical portions of surgical procedures are not defined. We hypothesized that a Delphi panel process would measure consensus on critical portions of 3 common hand surgical procedures. METHODS: We used a Delphi process to achieve consensus on the critical portions of carpal tunnel release, ulnar nerve transposition, and open reduction and internal fixation of the distal part of the radius. The panelists were 10 hand surgeons (7 fellowship-trained surgeons and 3 fellows). Following an in-person discussion to finalize steps for each procedure, 2 online rounds were completed to rate steps from 1 (not critical) to 9 (extremely critical). We operationalized consensus as ≥80% of ratings within the same range: 1 to 3 (not critical), 4 to 6 (somewhat critical), and 7 to 9 (critical). Because of a lack of consensus on some steps after round 2, another in-person discussion and a third online round were conducted to rate only steps involving disagreement or somewhat critical ratings using a dichotomous scale (critical or not critical). RESULTS: Following the first 2 rounds, there was consensus on 19 of 24 steps (including 3 steps being somewhat critical) and no consensus on 5 of 24 steps. At the end of round 3, there was consensus on all but 2 steps (identification of the medial antebrachial cutaneous nerve in ulnar nerve transposition and clinical assessment of joint stability in open reduction and internal fixation of the distal part of the radius), with moderate disagreement (3 compared with 7) for both. CONCLUSIONS: The panel reached consensus on the designation of critical or noncritical for all steps of a carpal tunnel release, all but 1 step of an ulnar nerve transposition, and all but 1 step of open reduction and internal fixation of the distal part of the radius. The lack of consensus on whether 2 of the steps are critical leaves this determination at the discretion of the attending surgeon. The findings of our Delphi panel provide guidance to our division on which portions of the surgical procedure are critical and thus require the attending surgeon's presence.

Exploring unnecessary invasive procedures in the United States: a retrospective mixed-methods analysis of cases from 2008-2016.

BACKGROUND: Unnecessary invasive procedures risk harming patients physically, emotionally, and financially. Very little is known about the factors that provide the motive, means, and opportunity (MMO) for unnecessary procedures. METHODS: This project used a mixed-methods design that involved five key steps: (1) systematically searching the literature to identify cases of unnecessary procedures reported from 2008 to 2016; (2) identifying all medical board, court, and news records on relevant cases; (3) coding all relevant records using a structured codebook of case characteristics; (4) analyzing each case using a MMO framework to develop a causal theory of the case; and (5) identifying typologies of cases through a two-step cluster analysis using variables hypothesized to be causally related to unnecessary procedures. RESULTS: Seventy-nine cases met inclusion criteria. The mean number of documents or sources examined for each case was 36.4. Unnecessary procedures were performed for at least five years in most cases (53.2%); 56.3% of the cases involved 30 or more patients, and 37.5% involved 100 or more patients. In nearly all cases the physician was male (96.2%) and working in private practice (92.4%); 57.0% of the physicians had an accomplice, 48.1% were 50 years of age or older, and 40.5% trained outside the U.S. The most common motives were financial gain (92.4%) and suspected antisocial personality (48.1%), followed by poor problem-solving or clinical skills (11.4%) and ambition (3.8%). The most common environmental factors that provided opportunity for unnecessary procedures included a lack of oversight (40.5%) or oversight failures (39.2%), a corrupt moral climate (26.6%), vulnerable patients (20.3%), and financial conflicts of interest (13.9%). CONCLUSIONS: Unnecessary procedures usually appear motivated by financial gain and occur in settings that have oversight problems. Preventive efforts should focus on early detection by peers and institutions, and decisive action by medical boards and federal prosecutors.

Informed Consent to Research with Cognitively Impaired Adults: Transdisciplinary Challenges and Opportunities.

Due to issues related to informed research consent, older adults with cognitive impairments are often excluded from high-quality studies that are not directly related to cognitive impairment, which has led to a dearth of evidence for this population. The challenges to including cognitively impaired older adults in research and the implications of their exclusion are a transdisciplinary issue. The ethical challenges and logistical barriers to conducting research with cognitively impaired older adults are addressed from the perspectives of three different fields-social work, emergency medicine, and orthopaedic surgery. Issues related to funding, study design, intervention components, and outcomes are discussed through the unique experiences of three different providers. A fourth perspective-medical research ethics-provides alternatives to exclusion when conducting research with cognitively impaired older adults such as timing, corrective feedback and plain language, and capacity assessment and proxy appointments. Given the increasing aging population and the lack of evidence on cognitively impaired older adults, it is critical that researchers, funders, and institutional review boards not be dissuaded from including this population in research studies.

Making ethical decisions: stories from surgeons.

Surgeons share their challenges and dilemmas in making ethical decisions in these twelve personal stories. The three commentary articles draw out the lessons the stories address. The commentators come from diverse backgrounds including sociology, bioethics, nursing, and surgery.