“Our Job is that Whole Gray Zone in Between There”: Investigating Genetic Counselors’ Strategies for Managing and Communicating Uncertainty

Zhong, Lingzi; Woo, Jihun; Steinhardt, M; Vangelisti, Anita L.

doi:10.1080/10410236.2019.1654171

Cited by 17 publications

(9 citation statements)

References 45 publications

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“…18,38,44,56,59,60 Recommendations presented in Fig 3 negatively affect patients' and families' levels of satisfaction and their trust in the competence of health care providers. 41,42,[65][66][67][68] Last, physicians' intentions when addressing uncertainty could only be implicitly inferred from the context. We do not know whether physicians strategically made use of specific strategies or did this rather intuitively.…”

Section: Strategies Throughout the Whole Trajectorymentioning

confidence: 99%

How Physicians Discuss Uncertainty With Parents in Intensive Care Units

Prins¹,

Linn

Kaam³

et al. 2022

Pediatrics

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BACKGROUND AND OBJECTIVES: Physicians and parents of critically ill neonates and children receiving intensive care have to make decisions on the child’s behalf. Throughout the child’s illness and treatment trajectory, adequately discussing uncertainties with parents is pivotal because this enhances the quality of the decision-making process and may positively affect the child’s and parents’ well-being. We investigated how physicians discuss uncertainty with parents and how this discussion evolves over time during the trajectory. METHODS: We asked physicians working in the NICU and PICU of 3 university medical centers to audio record their conversations with parents of critically ill children from the moment doubts arose whether treatment was in the child’s best interests. We qualitatively coded and analyzed the anonymized transcripts, thereby using the software tool MAXQDA 2020. RESULTS: Physicians were found to adapt the way they discussed uncertainty with parents to the specific phase of the child’s illness and treatment trajectory. When treatment options were still available, physicians primarily focused on uncertainty related to diagnostic procedures, treatment options, and associated risks and effects. Particularly when the child’s death was imminent, physicians had less “scientific” guidance to offer. They eliminated most uncertainty and primarily addressed practical uncertainties regarding the child’s dying process to offer parents guidance. CONCLUSIONS: Our insights may increase physicians’ awareness and enhance their skills in discussing uncertainties with parents tailored to the phase of the child’s illness and treatment trajectory and to parental needs in each specific phase.

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Section: Strategies Throughout the Whole Trajectorymentioning

confidence: 99%

How Physicians Discuss Uncertainty With Parents in Intensive Care Units

Prins¹,

Linn

Kaam³

et al. 2022

Pediatrics

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“…For example, research shows that genetic counselors (GCs) routinely encounter uncertainty in their practice, which forces them to engage in a variety of strategies to manage it. Specifically, GCs resort to seeking information, identifying social support, and normalizing uncertainty to cope with uncertainty [ 35 ]. Basher’s Theory of Uncertainty Management [ 36 ] explains that individuals can have negative, positive, or neutral responses to uncertainty and they manage their uncertainty by adopting the aforementioned strategies; that is, knowledge, social support, and normalization.…”

Section: Discussionmentioning

confidence: 99%

Toward Designs of Workplace Stress Management Mobile Apps for Frontline Health Workers During the COVID-19 Pandemic and Beyond: Mixed Methods Qualitative Study

2022

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Background In recent years, mobile apps have been developed to prevent burnout, promote anxiety management, and provide health education to workers in various workplace settings. However, there remains a paucity of such apps for frontline health workers (FHWs), even though FHWs are the most susceptible to stress due to the nature of their jobs. Objective The goal of this study was to provide suggestions for designing stress management apps to address workplace stressors of FHWs based on the understanding of their needs from FHWs’ own perspectives and theories of stress. Methods A mixed methods qualitative study was conducted. Using a variety of search strings, we first collected 41 relevant web-based news articles published between December 2019 and May 2020 through the Google search engine. We then conducted a cross-sectional survey with 20 FHWs. Two researchers independently conducted qualitative analysis of all the collected data using a deductive followed by an inductive approach. Results Prevailing uncertainty and fear of contracting the infection was causing stress among FHWs. Moral injury associated with seeing patients die from lack of care and lack of experience in handling various circumstances were other sources of stress. FHWs mentioned 4 coping strategies. Quick coping strategies such as walking away from stressful situations, entertainment, and exercise were the most common ways to mitigate the impact of stress at work. Peer support and counseling services were other popular methods. Building resilience and driving oneself forward using internal motivation were also meaningful ways of overcoming stressful situations. Time constraints and limited management support prevented FHWs from engaging in stress management activities. Conclusions Our study identified stressors, coping strategies, and challenges with applying coping strategies that can guide the design of stress management apps for FHWs. Given that the pandemic is ongoing and health care crises continue, FHWs remain a vulnerable population in need of attention.

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“…Zhong et al. (2020) recently found that strategies used by genetic counselors to communicate uncertainty regarding genetic testing results included three core themes: being open and honest, adapting to patients’ needs, and focusing on what is known. Another recent study found that HCP's address VUSs with breast cancer patients through 2 main categories: ambiguity and risk management (Scherr et al., 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Yet, in the case of VUSs, uncertainty is at the core of communication itself. HCPs must negotiate the expectations of patients, including negotiating how communication of uncertainty affects patients’ perceptions of the HCPs' credibility (Zhong et al., 2020). Furthermore, studying communication strategies of VUS disclosure has important implications for how genetic counselors can help facilitate meaning‐making for patients (Scherr et al., 2020).…”

Section: Introductionmentioning

confidence: 99%

Views of Israeli healthcare professionals regarding communication of genetic variants of uncertain significance to patients

Fridman

Raz

Timmermans³

et al. 2022

Journal of Genetic Counseling

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New technologies of DNA sequencing produce increasingly more high-resolution genetic data. Next-generation sequencing technologies provide in a single test more data on more genes or regions in the genome than the earlier sequencing technologies. Consequently, variants of uncertain significance are found more often, leading to a continuous process of re-interpreting and reclassifying genetic variants as either benign or pathogenic. Recent research suggests that about 8% of the variants initially classified as variants of uncertain clinical significance (VUSs) were later reclassified: either downgraded to less severe classification (about 91% of variants) or upgraded to more severe classifications (about 9% of variants, see Mersch et al., 2018). Reclassification is based on new information regarding variants' pathogenicity, such as population frequency, functional data, segregation analysis, and phenotype analysis. Periodical reinterpretation of VUSs is therefore inevitable yet involves collaboration among multiple stakeholders: public and private genetics laboratories, clinicians, genetic health professionals, and medical geneticists (Carrieri et al., 2017). It is challenging for healthcare professionals (HCPs) to remain abreast of VUS reclassification.Communicating and interpreting VUSs is trying for both pa-

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“Our Job is that Whole Gray Zone in Between There”: Investigating Genetic Counselors’ Strategies for Managing and Communicating Uncertainty

Cited by 17 publications

References 45 publications

How Physicians Discuss Uncertainty With Parents in Intensive Care Units

How Physicians Discuss Uncertainty With Parents in Intensive Care Units

Toward Designs of Workplace Stress Management Mobile Apps for Frontline Health Workers During the COVID-19 Pandemic and Beyond: Mixed Methods Qualitative Study

Views of Israeli healthcare professionals regarding communication of genetic variants of uncertain significance to patients

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