Family storytelling about hereditary cancer: Framing shared understandings of risk.

Family communication about the family's health history (FHH) is an important step in alerting individuals to their hereditary disease risks and facilitating prevention. Individuals often communicate about the FHH of hereditary cancer as a story, which highlights the importance of analyzing family narratives of hereditary cancer to better understand their relation to psychological and physical well-being. This study investigates the content of family stories by examining how narrative tone and framing relate to coping, perceptions of risk, and medical decision-making. The current study recruited 42 family dyads with a prevalent FHH of hereditary cancer to participate in dyadic phone interviews to jointly tell their family narrative of hereditary cancer. Using an iterative analysis, findings examine how families create a shared understanding of FHH and hereditary risk. Narrative tone reflects participants' psychological well-being and contributed to the way families framed their experiences. Common frames to family narratives of hereditary cancer included empowerment, adversity, laissez faire, and discrepant. Each frame gave insight into how families were coping, their perceptions of risk, and how they make medical decisions to manage those risks. Developing a better understanding of how families communicate about their hereditary cancer risks can aid in designing clinical interventions to help families re-frame their stories to promote improved health outcomes.

Applying Family Communication Patterns to Patient-provider Communication: Examining Perceptions of Patient Involvement, Satisfaction, and Medical Adherence.

This study investigates patient perceptions of patient-provider communication and family communication patterns theory (FCPT). Using FCPT, the study predicts that family communicative environment relates to patient perceptions of patient involvement in care as well as patient satisfaction and medical adherence. Further, this study tests new measures of conformity orientation (warm and cold conformity) to investigate the multi-faceted nature of the variable. The results show significant relationships between FCPT and patient perceptions and outcomes. Specifically, warm conformity was the strongest and most reliable predictor of patient perceptions and outcomes across the three FCPT variables tested in the model. Additionally, results show differences between how warm and cold conformity predict patient perception and outcome variables. Finally, tests of the interaction between conversation orientation and both types of conformity indicate relationships between interaction variables and patient involvement in care, but not satisfaction or adherence. Practical implications and future research ideas are also discussed.

The Relationships Between Doctor-Patient Affectionate Communication and Patient Perceptions and Outcomes.

The current article combines the literature on doctor-patient communication and affectionate communication. Using Affection Exchange Theory (AET), the study predicts that the need for affection and the benefits of affectionate communication translate to the doctor-patient setting, proposing a series of relationships from both perceived doctor affectionate communication and affection deprivation to several patient outcome variables (patient perception of the doctor, patient communication with the doctor, and patient satisfaction/adherence). The results strongly supported the predictions for both affectionate communication and affection deprivation, with affectionate communication positively relating to most outcome measures and affection deprivation negatively relating to most outcome measures. Affection deprivation served as a moderator for the relationship between provider competence and patient satisfaction, although affectionate communication moderated the relationship between provider competence and patient adherence. Implications and possible directions for future research are discussed.

Managing Face while Managing Privacy: Factors that Predict Young Adults' Communication about Sexually Transmitted Infections with Romantic Partners.

Sexually transmitted infections (STIs) are among the most common infectious diseases in the United States with nearly 20 million new cases diagnosed each year in young adults (age 15-24). Communicating with romantic partners about STIs can positively influence health outcomes, as treatment can then be sought, yet the discussions themselves can pose several face risks to both the person requesting STI information from a partner and the receiver of that request. This study examines how young adults enact and manage facework strategies in STI-related conversations with romantic partners, using Politeness Theory and Communication Privacy Management Theory as theoretical frameworks. Specifically, this study seeks to understand how self-efficacy in conversations about STIs, intentions to talk about STIs and willingness to communicate about health in general predicts four face response strategies (avoid, communicate with partner/talk, defend self, consider other), and to investigate how boundary permeability moderates each of these relationships. We found that boundary permeability affected the relationships between intentions regarding STIs and the communicate with partner and consider other face management responses in conversations about STIs.

"I Am Uncertain About What My Uncertainty Even Is": Men's Uncertainty and Information Management of Their BRCA-Related Cancer Risks.

Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.

Men's and Women's Approaches to Disclosure About BRCA-Related Cancer Risks and Family Planning Decision-Making.

Little is known about how men and women who test positive for a BRCA gene mutation or have a strong family history of carrying a BRCA mutation manage disclosures about their BRCA-related cancer risks and family planning decision-making. By conducting interviews with 25 men and 20 women, this study investigated men's and women's approaches to disclosing their BRCA-related cancer risks and family planning decision-making. Guided by the Disclosure Decision-Making Model (DD-MM), this study demonstrates that men and women assess both information and the recipients of disclosures when making disclosure decisions. Theoretical implications for the DD-MM are discussed along with practical implications for hereditary cancer risk and family planning.

"It was an Emotional Baby": Previvors' Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk.

Women who test positive for a BRCA genetic mutation are at an increased risk for developing hereditary breast and ovarian cancer and have a 50% chance of passing on their genetic mutation to their children. The purpose of this study was to investigate how women who test positive for a BRCA mutation but have not been diagnosed with cancer make decisions regarding family planning. Analysis of interviews with 20 women revealed they engage in logical and emotional decision-making styles. Although women want to be logical to reduce their hereditary cancer risk, emotions often complicate their decision-making. Women experience fear and worry about a future cancer diagnosis, yet also desire to create a family, particularly having children through natural conception. That is, women negotiate having preventative surgeries in a logical doctor-recommended timeframe but also organize those decisions around emotional desires of motherhood. Overall, this study demonstrates the complex decisions women who test positive for a BRCA mutation must make in regards to genetic testing timing, family planning, and overall quality of life.

Investigating Uncertainty in Genetic Counseling Encounters: Managing Information About Genetic Cancer Risk.

The Theory of Motivated Information Management (TMIM) was used to investigate how individuals at increased risk of developing hereditary cancer seek information from genetic counselors. Results show the TMIM model fit the data well in predicting participants' intentions to seek information from genetic counselors. Participants felt an uncertainty discrepancy that elicited feelings of anxiety, which in turn negatively predicted both outcome expectancies and efficacy assessments. Efficacy assessments, but not anxiety, significantly predicted participants' intentions to seek information from a genetic counselor in the future. Findings showed no significant relationship between outcome expectancies and efficacy assessments. One implication for genetic counselors is the need to more closely monitor emotional response to genetic disease risk-whether that emotional response be positive or negative-as that response may influence information-seeking intentions. Further, genetic counselors might also pay more attention to building efficacy for themselves (making patients feel the counselor is more credible) and their patients (increasing patient ability to communicate effectively about genetic disease risk). Analysis also extends TMIM theory by showing that in a relationship where information exchange is the primary function the model still showed good fit. However, outcome expectancies functioned differently than in previous tests of the model.

The Importance of Intergenerational Communication in Advance Care Planning: Generational Relationships among Perceptions and Beliefs.

This study explores triadic intergenerational perceptions of family members' beliefs and behaviors that often impact an individual's willingness to engage in advance care planning. Using data from 189 triads of young adults, their parents, and their grandparents, we examined generational relationships among individuals' openness about death, death anxiety, knowledge of surrogate decision-making, and advance care planning self-efficacy. Results of this study found significant relationships between grandparents and parents, as well as between parents and children for all variables except self-efficacy. Additionally, results of this study found indirect relationships between grandparents and their grandchildren for three variables. These findings underscore the need to treat advance care planning as a family communication issue. Implications for how advance care planning should be approached in conversations with healthcare providers and within the family are discussed.

"I'd Know That My Child Was Out There": Egg Donation, the Institutionalized "Ideal" Family, and Health Care Decision Making.

This study investigates how young women of egg-donating age perceive egg donation. Using institutional theory, this study demonstrates how participants frame a health care decision, such as egg donation, utilizing familial ideals. Results revealed that women expressed the importance of ownership over their genetic material and that familial ideals encourage an ideal way to create a family, which egg donation only fits as a last resort. Results show that familial ideals reach past the institution of family into broader decision making, such as that of health care. Further, results show that as more families are constructed through assisted reproductive technologies, attempts should be made to gradually alter the familial ideal to encompass novel medical technologies such as egg donation.

Investigating uncertainty and emotions in conversations about family health history: a test of the theory of motivated information management.

Although the importance of being knowledgeable of one's family health history is widely known, very little research has investigated how families communicate about this important topic. This study investigated how young adults seek information from parents about family health history. The authors used the Theory of Motivated Information Management as a framework to understand the process of uncertainty discrepancy and emotion in seeking information about family health history. Results of this study show the Theory of Motivated Information Management to be a good model to explain the process young adults go through in deciding to seek information from parents about family health history. Results also show that emotions other than anxiety can be used with success in the Theory of Motivated Information Management framework.

Resident perspectives of environmental health risk exposures after Hurricane Harvey.

This study examines what visitors to urban parks in Houston, TX, know about environmental health risks resulting from Hurricane Harvey, a category 4 storm that made landfall in August 2017 and dropped over 60 in. of rain in 8 days making it the most significant rainfall event in US history. Interviews were conducted with adult Houstonians using purposive sampling. In total, 27 interviews were conducted with 36 different participants. Interviews were audio-recorded, transcribed verbatim, and analyzed qualitatively using a phronetic iterative approach. This study found that park visitors lack sufficient knowledge about environmental health risks, yet they have strong desires to learn more about such risks. In particular, participants have clear opinions on what the content of the messages (i.e., concise, manageable, not fear-inducing) should be and how they would like to receive the information (i.e., conveniently accessible, from trusted local sources). Implications for health campaign interventions utilizing uncertainty theories are discussed.

Engaging Men With BRCA-Related Cancer Risks: Practical Advice for BRCA Risk Management From Male Stakeholders.

Men are at risk for developing hereditary cancers such as breast, prostate, pancreatic, and melanoma due to a pathogenic germline variant in either the BRCA1 or BRCA2 gene. The purpose of this study was to identify and provide practical advice for men managing their BRCA-related cancer risks based on men's real-life experiences. Semistructured interviews were conducted with 25 men who either tested positive for a pathogenic variant in BRCA1/2 gene or who had an immediate family member who had tested positive for a pathogenic variant in BRCA1/2. A thematic analysis of the interview transcripts was completed utilizing the constant comparison method. Qualitative analysis produced three categories of participant advice for men who recently learned of their hereditary cancer risk. Specifically, participants advised the following: (a) know the basics, (b) engage in the family narrative, and (c) advocate for yourself. Results showed the need for men to know and understand their BRCA cancer risks and communicate that genetic risk information to their family members and practitioners. In particular, the findings stress the importance of addressing men's risks and medical management from a family-focused approach. Overall, because men are historically undereducated about their BRCA-related cancer risks, this practical advice serves as a first step for men managing BRCA-related cancer risks and may ultimately assist them in making preventive and screening health behaviors.

Patterns of Communicating About Family Health History: Exploring Differences in Family Types, Age, and Sex.

Family communication environments can be a facilitator or barrier to family cooperation and communication in collecting family health history (FHH) information, which can facilitate disease prevention. This study examined the direct and indirect effects of family communicative environments on whether individuals actively collected FHH information, as well as how age and sex differences complicate this relationship. Participants (N = 203) completed online surveys, answering close-ended questions about their family's communication patterns, how open their family is to communicating about FHH, and whether they have actively collected FHH information. Results show there was a direct effect between open family communicative environments and active collection, and found FHH communication openness was a positive partial mediator. Conversely, family environments stressing hierarchy and homogeneity of beliefs inhibit open communication about and collection of a FHH. Analysis of age and sex as moderators in the models showed a significant conditional indirect effects, which grew stronger as participants' age increased. Furthermore, results showed open family communicative environments lead to active collection of FHH for women, but not for men. Results confirm the importance of family communicative environments in facilitating or inhibiting FHH collection. Findings from the current study provide intervention points for practitioners to advise patients on the importance of collecting a FHH and guide behaviors to collect FHH information based on the family communicative environment.

"How do we rally around the one who was positive?" Familial uncertainty management in the context of men managing BRCA-related cancer risks.

RATIONALE: Men with BRCA-related cancer risks face increased disease risk as well as the prospect of passing on their risk to children. OBJECTIVE: This study investigates men's communicative appraisal and management of uncertainty related to BRCA-related cancer risks and decision-making. METHODS: Guided by uncertainty management theory (UMT), a directed content analysis approach was utilized to analyze interviews with 25 men who either carry a pathogenic BRCA variant or have a 50% chance of carrying a variant but have not yet been tested. RESULTS: Participants appraised their individual uncertainty as irrelevant or dangerous but appraised their familial uncertainty as dangerous. Men appraising their uncertainty as a danger exhibited more proactive information seeking healthcare behaviors-such as genetic testing and following recommended screenings-than men who appraised their uncertainty as irrelevant. Participants appraised familial uncertainty as a danger and were engaged in information management with family members, as well as encouraging family members to engage in proactive healthcare decision-making. CONCLUSIONS: Men with BRCA-related cancer risks lack understanding about their risks and how to manage them. Increased attention should be paid to the development of interventions tailored specifically to men. Further, interventions focusing on strategically developing proactive family communication behaviors would also be beneficial to men and their families.

"I've just never gotten around to doing it": Men's approaches to managing BRCA-related cancer risks.

OBJECTIVE: To examine men's approaches to managing BRCA-related cancer risks. METHODS: 25 Qualitative interviews were conducted with men who are at risk for BRCA-related cancers. Thematic analysis was conducted using the constant comparison. RESULTS: Qualitative analysis revealed two different approaches for how men managed their BRCA-related cancer risks. Men were engaged when: (1) initially seeking information, (2) uptake of genetic testing, and (3) population screening procedures. Men were passively avoidant for: (1) follow-up information seeking, (2) uptake of genetic testing, and (3) BRCA-specific screening. Men's justifications for engaged risk management were to: (1) protect their family, (2) respond to encouragement from others, and (3) get knowledge for themselves. Their justifications for passively avoidant management were due to: (1) limited access to clear risk information, (2) little fear of cancer development, (3) barriers to testing/screening, and (4) reliance on incomplete illness representations. CONCLUSIONS: Men at risk for developing BRCA-related cancers approached risk management by primarily using a passive avoidance approach. That approach should be interpreted in context with the inconsistent information available to them, and the minimal NCCN guidelines for their risk surveillance. PRACTICE IMPLICATIONS: Findings may assist healthcare providers and family members in helping men manage their BRCA-related cancer risks.

"Take your time, then follow your heart:" Previvors' advice for communicating about family planning after testing positive for a BRCA genetic variant.

INTRODUCTION: The purpose of this study was to identify previvors' strategies for communicating about family planning after testing positive for a variant of the "breast cancer gene" (BRCA). METHOD: Semistructured interviews were conducted with 20 women currently in committed romantic relationships, but who had not yet completed family planning upon finding out about their BRCA mutation status. RESULTS: Data analysis produced three categories of participant advice given to newly diagnosed previvors. Participants advised the following: (a) the importance of engaging in two-way dialogue with their partners/spouses across the life span of the partnership, (b) seeking information on new technologies and information regarding family-planning and genetic-cancer-prevention decision-making, as well as recognizing where to go for different support needs, and (c) managing and acknowledging emotions surrounding their BRCA-related health decisions. DISCUSSION: Previvors who have already had family-planning and genetic-cancer-risk conversations had important advice for newly diagnosed previvors. Practical advice for starting and managing conversations with partners/spouses, family members, and friends are discussed. (PsycINFO Database Record