Co‐management of communication and care in adolescent and young adult oncology

Abstract

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.

Designing and validating novel communication measures for pediatric, adolescent, and young adult oncology care and research: The PedCOM measures

“…In prior studies, we developed a model of communication in pediatric and AYA oncology that included eight functions: building relationships, exchanging information, making decisions, managing uncertainty, enabling family self-management, responding to emotions, supporting hope, and providing validation. [11][12][13][14][15] We hypothesized that these eight functions captured the breadth of communication functions in pediatric and AYA oncology, and we subsequently wrote items for parent and AYA versions of Pediatric Communication Outcome Measure (PedCOM). informed the structure of our measure.…”

“…First, the underlying constructs in these measures were elicited from adults, whereas the roles and needs of parents and young AYAs might be different from adult patients. For example, our prior work identified two novel communication functions that were not represented in the adult NCI framework: providing validation and supporting hope 11–15 . We recognize that age is not a binary that can be split between “pediatric” and “adult,” and different developmental and life experiences can lead to different communication needs.…”

“…Through engagement with oncology clinicians, parents of children with cancer, and AYAs (aged 12-24 years old) with cancer, we identified eight core functions that communication fulfills in pediatric and AYA oncology settings: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, providing validation, and supporting hope. [11][12][13][14][15] Other essential communication tasks are related to these core aspirational functions, such as mitigating conflict (e.g., responding to emotions or building relationships) and correcting misunderstandings (e.g., exchanging information, making decisions, or other functions, depending on the context). These functions represent the breadth of communication experiences in pediatric and AYA oncology, and failing to fulfill these functions can lead to emotional distress, 16 insufficient understanding, 15 loss of trust, 3 and even medical harm.…”

“…For example, our prior work identified two novel communication functions that were not represented in the adult NCI framework: providing validation and supporting hope. [11][12][13][14][15] We recognize that age is not a binary that can be split between "pediatric" and "adult," and different developmental and life experiences can lead to different communication needs.…”

“…Our research team previously adapted and expanded the US National Cancer Institute (NCI)’s Framework for Patient‐Centered Communication in Cancer Care 10 to focus on communication in pediatric oncology. Through engagement with oncology clinicians, parents of children with cancer, and AYAs (aged 12–24 years old) with cancer, we identified eight core functions that communication fulfills in pediatric and AYA oncology settings: building relationships, exchanging information, making decisions, enabling family self‐management, managing uncertainty, responding to emotions, providing validation, and supporting hope 11–15 . Other essential communication tasks are related to these core aspirational functions, such as mitigating conflict (e.g., responding to emotions or building relationships) and correcting misunderstandings (e.g., exchanging information, making decisions, or other functions, depending on the context).…”