Improving Communication in Adolescent Cancer Care: A Multiperspective Study

Essig, Stefan; Steiner, Claudia; Kuehni, Claudia E.; Weber, Heidemarie; Kiss, Alexander

doi:10.1002/pbc.26012

Cited by 56 publications

(93 citation statements)

References 41 publications

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“…10 To enact their protective roles, additional intervention research is needed on ways to help families, friends, and healthcare providers effectively care for themselves so they remain emotionally available to the AYA. Recently, there is increased attention on helping healthcare providers learn effective ways to communication that expresses emotional support for AYA, 42, 43 which has been linked to better treatment compliance and reduced depression and anxiety in AYA with cancer. 44 …”

Section: Discussionmentioning

confidence: 99%

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer

et al. 2017

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Background Empirically derived and tested models are necessary to develop effective, holistic interventions to improve positive health outcomes in adolescents and young adults (AYA) with cancer, yet few exist. This paper is the second of two papers reporting on evaluation of the Resilience in Illness Model (RIM) as a predictive model to guide positive health research and practice. Objective To report the confirmatory model evaluation of the RIM. Methods A confirmatory evaluation of RIM was done using baseline data from a sample of 113 AYA aged 11 to 24 years who were undergoing hematopoietic stem cell transplant and enrolled in a randomized controlled trial of a behavioral intervention to enhance resilience. Data were analyzed using latent variable structural equation modeling. Results Goodness-of-fit indices supported RIM as a confirmed model and accounted for large amounts of variance in the outcomes of self-transcendence (62%) and resilience (72%), and in three of five mediators, specifically social integration (74%), courageous coping (80%), and hope-derived meaning (87%) as well as small to moderate amounts of variance in the remaining mediators of defensive coping (1%) and family environment (35%). Conclusions Findings establish the RIM as a plausible predictive framework for explaining ways AYA with cancer transcend their illness and achieve resilience resolution, and for guiding intervention studies in this population. Additional research is needed to explore RIM's transferability based on stage of illness, other chronic diseases, and cultural diversity. Implications for Practice Results support the RIM as an appropriate guide for developing and evaluating interventions to foster positive adjustment in AYA with cancer.

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Section: Discussionmentioning

confidence: 99%

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer

et al. 2017

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“…d Totals may not equal 100% because studies included patients across several time periods and 23 studies did not report time of the interview with respect to therapy. 90 • I would not even think of telling the nurse about my mood. f Totals may not equal 100% because studies included patients with several types of cancer and 35 studies did not report on the type of cancer.…”

Section: Broaching Intimate and Private Topicsmentioning

confidence: 99%

Communication during childhood cancer: Systematic review of patient perspectives

Lin

Gutman

Hanson

et al. 2019

Cancer

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Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer. Cancer 2020;126:701-716.

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“…Second, the mean proportion of clinician‐to‐adolescent communication during these conversations was low and consisted primarily of giving information, asking about medical history questioning, performing the physical examination, and social/personal talk. While these are key elements of the patient–clinician relationship and necessary components of the encounter, adolescent patients also want clinicians to go deeper by demonstrating empathy, providing encouragement, and asking for opinions/preferences . We observed multiple instances in which clinicians demonstrated these forms of communication, but they were inconsistent and did not happen in all conversations.…”

Section: Discussionmentioning

confidence: 84%

“…First, we found that clinicians directed most communication at the parent rather than the adolescent. This falls contrary to adolescents’ requests for information to be presented directly to them in an age‐appropriate manner . When clinicians direct more of their communication to adolescents, they often perceive the information as easier to understand .…”

Section: Discussionmentioning

confidence: 88%

“…This falls contrary to adolescents' requests for information to be presented directly to them in an age-appropriate manner. 4,8,9,[26][27][28] When clinicians direct more of their communication to adolescents, they often perceive the information as easier to understand. 21 Adolescents have also highlighted the importance of clinicians frequently checking in for understanding, notably during conversations when new information is presented.…”

Section: Discussionmentioning

confidence: 99%

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Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians

Frederick

Mack

2017

Pediatric Blood & Cancer

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Adolescent patient involvement in conversations about relapsed or refractory cancer is limited and often focused on responding to questions and participating in the history questioning and physical examination. Adolescents play a more active role in conversations about their cancer care when clinicians direct communication toward them. This study highlights opportunities for clinicians to actively engage adolescents in discussions about their medical care.

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Improving Communication in Adolescent Cancer Care: A Multiperspective Study

Cited by 56 publications

References 41 publications

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer

Communication during childhood cancer: Systematic review of patient perspectives

Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians

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