Browsing by Author "Mack, Jennifer W."

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    Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer
    (MDPI, 2022-12-21) Srinivas, Meghana; Kaye, Erica C.; Blazin, Lindsay J.; Baker, Justin N.; Mack, Jennifer W.; DuBois, James M.; Sisk, Bryan A.; Pediatrics, School of Medicine
    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.
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    A Research Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness
    (AMA, 2017-09) Tulsky, James A.; Beach, Mary Catherine; Butow, Phyllis N.; Hickman, Susan E.; Mack, Jennifer W.; Morrison, R. Sean; Street, Richard L., Jr.; Sudore, Rebecca L.; White, Douglas B.; Pollak, Kathryn I.; School of Nursing
    Importance Poor communication by health care professionals contributes to physical and psychological suffering in patients living with serious illness. Patients may not fully understand their illness, prognosis, and treatment options or may not receive medical care consistent with their goals. Despite considerable research exploring the role of communication in this setting, many questions remain, and a clear agenda for communication research is lacking. Observations Through a consensus conference and subsequent activities, we reviewed the state of the science, identified key evidence gaps in understanding the impact of communication on patient outcomes, and created an agenda for future research. We considered 7 broad topics: shared decision making, advance care planning, communication training, measuring communication, communication about prognosis, emotion and serious illness communication, and cultural issues. We identified 5 areas in which further research could substantially move the field forward and help enhance patient care: measurement and methodology, including how to determine communication quality; mechanisms of communication, such as identifying the specific clinician behaviors that patients experience as both honest and compassionate, or the role of bias in the clinical encounter; alternative approaches to advance care planning that focus on the quality of serious illness communication and not simply completion of forms; teaching and disseminating communication skills; and approaches, such as economic incentives and other clinician motivators, to change communication behavior. Conclusions Our findings highlight the urgent need to improve quality of communication between health care professionals and patients living with serious illness through a broad range of research that covers communication skills, tools, patient education, and models of care.
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    Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
    (Public Library of Science, 2022-07-08) Sansom-Daly, Ursula M.; Wiener, Lori; Darlington, Anne-Sophie; Poort, Hanneke; Rosenberg, Abby R.; Weaver, Meaghann S.; Schulte, Fiona; Anazodo, Antoinette; Phillips, Celeste; Sue, Louise; Herbert, Anthony R.; Mack, Jennifer W.; Lindsay, Toni; Evans, Holly; Wakefield, Claire E.; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group; School of Nursing
    For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.