Helping adolescents and young adults (AYA) with cancer manage identity distress: Enhancing clinician-AYA patient communication to promote identity development.
A cancer diagnosis during adolescence and young adulthood (AYA) disrupts AYAs' identity formation, a critical task for healthy development, and contributes to psychological distress called identity distress. Clinical communication is central to promoting AYAs' healthy identity development. We sought to identify aspects of clinician-diagnosed AYA communication that can promote AYAs' identity development and potentially buffer them from distress.
In-depth, semi-structured interviews were conducted with two groups (AYA oncology clinicians and diagnosed AYAs). Transcripts were thematically analyzed to capture communication that clinicians and AYAs perceive promotes AYAs' identity development and buffers related distress.
Fourteen diagnosed AYAs and 7 clinicians identified three clinician- or AYA-led communication approaches and associated strategies that they perceive can buffer identity distress and promote identity development: 1) clinicians' using person-centered communication (e.g., empathic communication); 2) promoting AYAs' control/self-management of care (e.g., not dictating AYAs' behavior); and 3) prioritizing/seeing the person behind the patient (e.g., knowing the AYA as a person).
Both AYA oncology clinicians and diagnosed AYAs can communicate in ways that protect AYAs' identity development and related psychological well-being. Findings can be implemented into targeted communication skills interventions to teach health-promoting behavior and augment AYAs' psychosocial oncology care.
Bagautdinova D
，Bylund CL
，Forthun LF
，Miller CA
，Hamel LM
，Fisher CL
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Interdependent functions of communication with adolescents and young adults in oncology.
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.
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.
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.
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.
Sisk BA
，Keenan M
，Schulz GL
，Kaye E
，Baker JN
，Mack JW
，DuBois JM
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AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions.
Adolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer-related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead to suboptimal guidance. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs.
Two cross-sectional online surveys (AYAs, n = 299; HCP, n = 80) on online information and eHealth needs were conducted. HCPs provided indications of their perceptions of AYA's needs.
AYAs reported significantly more online information needs compared with HCPs' perceptions regarding: survival rates (AYA = 69%, HCP = 35%, p < 0.001), treatment guidelines (AYA = 65%, HCP = 41%, p < 0.001), return of cancer (AYA = 76%, HCP = 59%, p = 0.004), "what can I do myself" (AYA = 68%, HCP = 54%, p = 0.029), and metastases (AYA = 64%, HCP = 50%, p = 0.040). Significantly more unmet eHealth needs were reported by AYAs compared with HCPs relating to access to own test results (AYA = 25, HCP = 0%, p < 0.001), request tests (AYA = 30%, HCP = 7%, p < 0.001), medical information (AYA = 22%, HCP = 0%, p = 0.001), e-consult with nurses (AYA = 30%, HCP = 10%, p < 0.001), e-consult with physicians (AYA = 38%, HCP = 13%, p = 0.001), and request prescriptions (AYA = 33%, HCP = 21%, p = 0.009).
AYAs' online information and eHealth needs are partially discrepant with the impression HCPs have, which could result in insufficient guidance related to AYAs' needs. AYAs and HCPs should get guidance regarding where to find optimal information in a language they understand. This may contribute to AYAs' access, understanding, and satisfaction regarding online information and eHealth.
van de Graaf DL
，Vlooswijk C
，Bol N
，Krahmer EJ
，Bijlsma R
，Kaal S
，Sleeman SHE
，van der Graaf WTA
，Husson O
，van Eenbergen MC
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《Cancer Medicine》
ResearchGate
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钛学术
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