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.

Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer.

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Methods: We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Results: Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusions: Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.

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.

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.

Uncovering Family Treatment Decision-Making Processes: The Value and Application of Case Study Methods to Family Research.

Research on how and why family processes influence phenomena is essential to advancing many areas of science. Case study methods offer an approach that overcomes some of the sampling and analysis obstacles researchers face when studying families. This article aims to illustrate the benefits of case study methods for studying complex family processes using an example from treatment decision-making in sickle cell disease. Using survey, observation, and interview data from various family members within multiple family units, we detail our application of the following analytic strategies: (a) proposition-building, (b) pattern-matching, and (c) cross-case synthesis. Incorporating propositions from a conceptual framework assisted us in study development, data collection, and analysis. Development of graphs and matrices to create thematic family profiles uncovered how and why treatment decision-making occurred as a family process in a pediatric chronic illness. Case study methods are an established, but innovative approach to investigating various phenomena in families.

Patient and Parent Decision-Making in the Setting of Chemotherapy-Induced Sensorineural Hearing Loss.

OBJECTIVES: Children with malignancies may be exposed to ototoxic therapies resulting in sensorineural hearing loss (SNHL). There is no consensus as to when intervention with amplification is necessary due to a variety of factors such as disease status, speech and language development, perceived difficulty with communication, and limitations of technology to fit these challenging losses. The decision to proceed with amplification after cancer can be difficult for patients and families. The purpose of this study is (1) to understand the decision-making (DM) process of childhood cancer survivors (CCSs) with SNHL and their parents and (2) to identify their decisional needs. DESIGN: Semi-structured interviews guided by the Ottawa's decision support framework were recorded and transcribed verbatim. Inclusion criteria were CCSs ages 8 to 30 years old with a Chang grade >1b SNHL and off-therapy; parents of this group were also eligible. Patients with active disease were excluded. Prompts inquired of sources of decisional conflict, role in DM, and DM behaviors. Inductive content analysis of the narrative qualitative data was used. RESULTS: Seven parents of CCSs and 6 CCSs participated. Themes in the CCS group included: (1) making sense of ototoxic SNHL; (2) desiring personalized education and treatment of SNHL; (3) playing an active role in the joint DM process; and (4) accepting hearing aids requires time and effort. The parent group shared the first and last theme with the CCS group and had two unique themes: (1) needing experts to respect the individual's journey to SNHL acceptance and (2) moving past the cancer experience to acceptance. Parents more often framed their DM within the context of already experiencing the trauma of cancer, whereas CCSs did not. One parent said, "You see all the rubble and you've lived through the devastation of the storm, but now you got to figure out what's broken." CCSs expressed bodily concerns regarding amplification, such as discomfort to the ear and difficulty in adjusting to the volume. The following needs were identified: early, re-enforced education regarding late effects risks; open communication among providers, CCSs, and parents; and audiogram result interpretations in patient- and parent-friendly language. CONCLUSIONS: Understanding the DM process from the CCS and parent's perspectives should be considered when providing counseling for hearing amplification in the setting of cancer-related SNHL. Earlier and consistent delivery of late effects education, open communication regarding risk for SNHL, and improved delivery of audiogram results should be targets for meeting unmet needs. These findings should inform the development of decision aids to reduce decisional conflict in this population.

Communication interventions in adult and pediatric oncology: A scoping review and analysis of behavioral targets.

BACKGROUND: Improving communication requires that clinicians and patients change their behaviors. Interventions might be more successful if they incorporate principles from behavioral change theories. We aimed to determine which behavioral domains are targeted by communication interventions in oncology. METHODS: Systematic search of literature indexed in Ovid Medline, Embase, Scopus, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Clinicaltrials.gov (2000-October 2018) for intervention studies targeting communication behaviors of clinicians and/or patients in oncology. Two authors extracted the following information: population, number of participants, country, number of sites, intervention target, type and context, study design. All included studies were coded based on which behavioral domains were targeted, as defined by Theoretical Domains Framework. FINDINGS: Eighty-eight studies met inclusion criteria. Interventions varied widely in which behavioral domains were engaged. Knowledge and skills were engaged most frequently (85%, 75/88 and 73%, 64/88, respectively). Fewer than 5% of studies engaged social influences (3%, 3/88) or environmental context/resources (5%, 4/88). No studies engaged reinforcement. Overall, 7/12 behavioral domains were engaged by fewer than 30% of included studies. We identified methodological concerns in many studies. These 88 studies reported 188 different outcome measures, of which 156 measures were reported by individual studies. CONCLUSIONS: Most communication interventions target few behavioral domains. Increased engagement of behavioral domains in future studies could support communication needs in feasible, specific, and sustainable ways. This study is limited by only including interventions that directly facilitated communication interactions, which excluded stand-alone educational interventions and decision-aids. Also, we applied stringent coding criteria to allow for reproducible, consistent coding, potentially leading to underrepresentation of behavioral domains.

Early Identification of Barriers and Facilitators to Self-Management Behaviors in Pediatric Patients With Sickle Cell Disease to Minimize Hematopoietic Cell Transplantation Complications.

Hematopoietic cell transplantation (HCT) is an elective, curative treatment option for patients with sickle cell disease (SCD). Transplant requires extensive self-management behaviors to be successful. The purpose of this study was to describe potential barriers and facilitators to self-management in a group of pediatric patients with SCD prior to HCT and their medical outcomes post-HCT. A multiple case study approach was used to describe 4 pairs of transplant recipients grouped by age, donor type, and donor source. Each pair included a case with minimal and increased post-HCT complications. Complications included readmissions, graft-versus-host disease, systemic infections, and survival in the first year post-HCT. Variables were retrospectively collected and content analyzed to identify barriers and facilitators within and across pairs using existing self-management frameworks. While higher risk transplants experienced more complications, 3 of the 4 cases with increased complications had a larger number of modifiable barriers identified compared with those experiencing minimal complications. At least one modifiable barrier and multiple facilitators were identified in all cases. A standardized psychosocial assessment process with an established plan to mitigate barriers and promote facilitators to self-management is essential to optimize outcomes in patients with SCD undergoing elective HCT.

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases.

Hematopoietic cell transplantation (HCT) is not a trivial treatment decision in pediatrics. We sought to understand what influences this decision-making process from the perspectives of the pediatric patients, their family, and physicians. Using integrative review methods, we identified 19 relevant studies: six qualitative, ten quantitative, and three mixed methods. Synthesis of the results revealed six themes describing patient, family, and provider decision-making processes with distinct subthemes contrasting influential factors among malignant and nonmalignant diseases. Identification of what influences HCT decision making will aid in development of decision support, education, and communication strategies. The child/adolescent voice and provider perspective warrant more attention.