Nursing and Health Communication: A Research Alliance to Improve Patient Outcomes

Today’s research environment necessitates interdisciplinary research partnerships to optimize patient outcomes and facilitate behavior change. Collaboration is also necessary to meet goals and eligibility for research funding opportunities. Nursing and health communication scholars are well positioned to collaborate for many reasons including shared research interests and commonality of design, methods and theory. Skills from each discipline can enhance the richness of research questions and analyses of cooperative research studies. Working together, we have an opportunity to effectively improve patient care and enhance the translation of research findings into practice

Previvors’ Perceptions of Hereditary Breast and Ovarian Cancer Health-related Information

The purpose of this study is to identify female previvors’ perceptions of hereditary breast and ovarian cancer (HBOC) health-related information. Previvors are individuals who have tested positive for a harmful BRCA genetic mutation, which increases their lifetime risk for HBOC, but who have never been diagnosed with cancer. As a part of a larger research project where 25 qualitative interviews were conducted, this manuscript reports on the analysis of ten interviews which are most relevant to the research focus. Using the constant comparative method, themes were created and developed from the interview data. The results indicate previvors view information as a source of power. These women reported feeling personally responsible for seeking and sharing information, while also relying on medical professionals to provide credible sources of information. Furthermore, previvors emphasized a desire for medical professionals to be more informed about BRCA in order to assist them in making personal health decisions. This study presents the perceptions regarding HBOC information as reported by this population of previvors. The findings indicate that information is not provided in an organized way relative to their specific needs. Therefore, the authors recommend an educational intervention tool for previvors and their medical professionals

Previvors’ Perceptions of Hereditary Breast and Ovarian Cancer Health-related Information

The purpose of this study is to identify female previvors’ perceptions of hereditary breast and ovarian cancer (HBOC) health-related information. Previvors are individuals who have tested positive for a harmful BRCA genetic mutation, which increases their lifetime risk for HBOC, but who have never been diagnosed with cancer. As a part of a larger research project where 25 qualitative interviews were conducted, this manuscript reports on the analysis of ten interviews which are most relevant to the research focus. Using the constant comparative method, themes were created and developed from the interview data. The results indicate previvors view information as a source of power. These women reported feeling personally responsible for seeking and sharing information, while also relying on medical professionals to provide credible sources of information. Furthermore, previvors emphasized a desire for medical professionals to be more informed about BRCA in order to assist them in making personal health decisions. This study presents the perceptions regarding HBOC information as reported by this population of previvors. The findings indicate that information is not provided in an organized way relative to their specific needs. Therefore, the authors recommend an educational intervention tool for previvors and their medical professionals

“When Information is Not Enough”: A Model for Understanding \u3cem\u3eBRCA\u3c/em\u3e-Positive Previvors’ Information Needs Regarding Hereditary Breast and Ovarian Cancer Risk

Objective: To investigate BRCA-positive, unaffected patients’ – referred to as previvors – information needs after testing positive for a deleterious BRCA genetic mutation. Methods: 25 qualitative interviews were conducted with previvors. Data were analyzed using the constant comparison method of grounded theory. Results: Analysis revealed a theoretical model of previvors’ information needs related to the stage of their health journey. Specifically, a four-stage model was developed based on the data: (1) pre-testing information needs, (2) post-testing information needs, (3) pre-management information needs, and (4) post-management information needs. Two recurring dimensions of desired knowledge also emerged within the stages—personal/social knowledge and medical knowledge. Conclusions: While previvors may be genetically predisposed to develop cancer, they have not been diagnosed with cancer, and therefore have different information needs than cancer patients and cancer survivors. Practice Implications: This model can serve as a framework for assisting healthcare providers in meeting the specific information needs of cancer previvors

The cancer information overload (CIO) scale: Establishing predictive and discriminant validity

Survey data suggests that approximately three-fourths of adults are overwhelmed by cancer information – a construct we label cancer information overload (CIO). A significant limitation of existing research is that it relies on a single-item measure. The objective of the current study is to develop and validate a multi-item measure of CIO. Study 1 (N=209) surveyed healthcare and manufacturing employees at eight worksites. Colonoscopy insurance claims data were culled eighteen months later to evaluate the predictive validity of CIO. Study 2 (N=399) surveyed adults at seven shopping malls. CIO and cancer fatalism were measured to examine the properties of the two constructs. Study 1 identified a reliable 8-item CIO scale that significantly predicted colonoscopy insurance claims 18 months after the initial survey. Study 2 confirmed the factor structure identified in Study 1, and demonstrated that CIO, cancer fatalism about prevention, and cancer fatalism about treatment are best modeled as three distinct constructs. The perception that there are too many recommendations about cancer prevention to know which ones to follow is an indicator of CIO, a widespread disposition that predicts colon cancer screening and is related to, but distinct from, cancer fatalism. Many adults exhibit high CIO, a disposition that undermines health efforts. Communication strategies that mitigate CIO are a priority. In the short-term, health care providers and public health professionals should monitor the amount of information provided to patients and the public

What People Want to Know About Their Genes: A Critical Review of the Literature on Large-Scale Genome Sequencing Studies

From a public health perspective, the “All of Us” study provides an opportunity to isolate targeted and cost-effective prevention and early-detection strategies. Identifying motivations for participation in large-scale genomic sequencing (LSGS) studies, and motivations and preferences to receive results will help determine effective strategies for “All of Us” study implementation. This paper offers a critical review of the literature regarding LSGS for adult onset hereditary conditions where results could indicate an increased risk to develop disease. The purpose of this review is to synthesize studies which explored peoples’ motivations for participating in LSGS studies, and their desire to receive different types of genetic results. Participants were primarily motivated by altruism, desire to know more about their health, and curiosity. When asked about hypothetically receiving results, most participants in hypothetical studies wanted all results except those which were uncertain (i.e., a variant of uncertain significance (VUS)). However, participants in studies where results were returned preferred to receive only results for which an intervention was available, but also wanted VUS. Concerns about peoples’ understanding of results and possible psychosocial implications are noted. Most studies examined populations classified as “early adopters,” therefore, additional research on motivations and expectations among the general public, minority, and underserved populations is needed

Uncertainty in healthcare and health decision making: Five methodological and conceptual research recommendations from an interdisciplinary team

Uncertainty is prevalent in various health contexts. It is imperative to understand how health-related uncertainty can impact individuals’ healthcare experiences and health decision making. The purpose of the present paper is to provide five overarching recommendations from an interdisciplinary team of experts to address gaps in the literature on health-related uncertainty. We present a case study of health-related uncertainty within the specific context of alcohol use to demonstrate these gaps and provide context for the recommendations. The five recommendations concerning health-related uncertainty include: (1) use common, consistent terminology to discuss uncertainty, (2) clarify measures of individual differences in response to uncertainty, (3) increase research on uncertainty and affect, (4) investigate the impact of the channel through which uncertainty is communicated, and (5) develop theory-driven interventions to improve uncertainty management. We conclude by reviewing health contexts in which health-related uncertainty exists and note how our recommendations complement existing reviews and data.</p