Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.

Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.

Partner presence in clinical conversations about sexual health: Breast cancer survivors', partners', and providers' perspectives of triadic interactions.

PURPOSE: Breast cancer survivors' (BCSs') sexual health (SH) clinical conversations are rarely studied from a dyadic perspective let alone from a triadic perspective. Using a triadic approach, we evaluated BCSs' comfort discussing SH with partners present and identified factors that can contribute to their comfort level. DESIGN: Qualitative approach using in-depth interviews. PARTICIPANTS: 93 BCSs, partners, and providers involved in BCS care. METHODS: In-depth interviews with BCSs, partners, and providers explored triadic perspectives to understand factors informing BCSs' comfort level. Thematic analysis was used to analyze data. FINDINGS: Four themes characterize potential benefits of partner presence: 1) partner facilitates information exchange, 2) partner realizes BCS's SH concerns are "a real thing," 3) partner better understands SH challenges, and 4) partner presence encourages relational communication about SH. Five themes illustrate potential complications of partner presence: 1) partner feels/becomes embarrassed, 2) partner is/becomes defensive, 3) partner presence constrains BCS's agency in clinical conversations, 4) partner presence threatens partner's view of BCS as a sexual being, and 5) partner presence increases partner burden. IMPLICATIONS FOR PSYCHOSOCIAL ONCOLOGY: Providers should (1) initiate conversations about BCS comfort with partner presence, (2) be aware of the interaction between BCS primary and secondary goals, (3) consider how BCS/partner goal conflicts obstruct BCS agency and sexual/relational health, and (4) offer opportunities to clarify goals and expectations, and coordinate therapeutic options.

Piloting an Interprofessional Narrative-Based Interactive Workshop for End-of-Life Conversations: Implications for Learning and Practice.

BACKGROUND: Based on the principles of Narrative Medicine, this study explored a narrative-based workshop for multi-level interdisciplinary clinicians who have EOL conversations. METHODS: Fifty-two clinicians participated in narrative-based interactive workshops. Participants engaged narrative in three forms: viewing narratives, writing/sharing narratives, and co-constructing narratives. Post workshop interviews were conducted and thematically analyzed. RESULTS: Five themes characterized how the workshop shaped learning and subsequent care experiences: (1) learning to enter/respond to the patient stories, (2) communicating across professions and disciplines, (3) practicing self-care. Additional themes emphasized (4) barriers to narrative learning and (5) obstacles to applying narrative to practice. DISCUSSION: Results highlight the function/utility of narrative forms such as the value of processing emotions via reflective writing, feeling vulnerable while sharing narratives, and appreciating colleagues' obstacles while observing patient-clinician simulations. Challenges associated with narrative such as writing anxiety and barriers to implementation such as time constraints are detailed to inform future initiatives.

Talking about sexual health during survivorship: understanding what shapes breast cancer survivors' willingness to communicate with providers.

PURPOSE: Breast cancer survivor (BCS)-provider communication about sexual health (SH) is often absent or inadequate. Patients report wanting providers to broach the topic, but providers cite barriers to initiating discussions. While the health care community works to address barriers, it is unrealistic to rely solely on provider initiation of SH conversations. This research investigates willingness to communicate about sexual health (WTCSH) to better understand what may interfere with survivors' ability to self-advocate and receive care for these concerns. METHODS: (N = 305) BCSs completed online surveys. Hierarchical multiple regression determined the relationship between Sexual Quality of Life-Female (SQOL-F), which measures psychological and social dimensions of SH and WTCSH. Interviews were then conducted with forty BCSs. The constant comparative method was used to thematically analyze the transcripts. RESULTS: The mean SQOL score was 53.4 out of 100. No statistically significant differences in SQOL or WTCSH were found by age or survivorship length. The positive relationship between WTCSH and SQOL was significant, F (6,266) = 4.92, p < .000, adj. R2 = .080). Five themes illustrated factors that shape WTCSH: (1) comfort discussing SH; (2) perception of demographic similarity/discordance; (3) patient-centered communication; (4) belief that SH is (un)treatable, and (5) ability to access timely/coordinated care. CONCLUSIONS: Findings establish the significance of SH concerns and provide an in-depth understanding of intrapersonal, interpersonal, and organizational issues informing WTCSH. IMPLICATIONS FOR CANCER SURVIVORS: Age and gender dynamics, perceptions of provider SQOL messaging, and futility influence survivor openness. Addressing these areas may encourage disclosure among women who would otherwise continue to suffer in silence.

Perpetuating the cycle of silence: the intersection of uncertainty and sexual health communication among couples after breast cancer treatment.

PURPOSE: The aims of this study are (1) to identify sources of uncertainty breast cancer survivors and partners of breast cancer survivors (BCS) report as a result of sexual health changes after primary treatment and (2) to investigate the challenges they experience when attempting to communicate about sexual health-related uncertainty. METHODS: Forty BCS and 13 partners completed written reflections and participated in semi-structured interviews. RESULTS: Analyses revealed five predominant sources of uncertainty for BCS and partners: perceptions of post-treatment body, worry about effects on relational partners, ethical concerns about dissatisfaction with sexual relationship (partners only), fears about future of the relationship, and apprehension about SH treatment futility. These concerns are linked to communication challenges for couples: supporting survivors' body esteem, navigating potentially hurtful disclosures, responding to partners' "obstructive behavior," and believing communication is futile. CONCLUSIONS: Findings suggest women and partners find themselves caught in a destructive cycle that reinforces uncertainty and inadvertently perpetuates silence and relational distress. To disrupt the cycle of silence, BCS and partners need to know that their interpretation of the other person's behaviors/needs is not always accurate. Strategies are required to help women and their partners express uncomfortable thoughts and feelings in safe and supportive environments. Practitioners should be conscious of potential SH issues, be familiar with existing support resources for survivors, and be prepared to disseminate information that will empower women and their partners.

"Operating in the dark": Nurses' attempts to help patients and families manage the transition from oncology to comfort care.

AIMS AND OBJECTIVES: To investigate challenges nurses face when providing care for oncology patients transitioning from curative to palliative care and to identify educational and support opportunities for nurses. BACKGROUND: Communicating with oncology patients/families transitioning from curative treatments to care focused on comfort can be problematic for a variety of reasons. Research suggests discrepancies exist between physicians' and patients' perceptions of probable length of life. These disconnects can deepen suffering. Oncology and palliative care nurses are well positioned to facilitate this transition. However, they receive little formal instruction regarding these complex scenarios beyond what occurs through on-the-job training. METHODS: Twenty-eight nurses working in oncology (n = 14) and palliative care (n = 14) settings participated. The constant comparative method was used to analyse the data. RESULTS: Four themes emerged that characterise oncology and palliative care nurses' experiences: (a) coping with interprofessional communication errors during the transition, (b) responding to patient/family reactions to miscommunication about the goals of care, (c) navigating emotional connection to patients, and (d) adapting to sociocultural factors that influence information exchange. CONCLUSIONS: This study supports previous research regarding challenges related to patient reactions, family relationships and emotional burden during end-of-life care. However, it adds to the literature by a providing a more in-depth explication of interprofessional and patient-physician communication barriers that negatively impact care. RELEVANCE TO CLINICAL PRACTICE: Misunderstandings between patients, physicians and nurses have the potential to distress complicate nurses' efforts to support patients and families. Nurses reported a problematic power dynamic that impedes their ability to facilitate communication between patient and physician or to offer insights that could enhance patient care. Medical education and continuing education initiatives are needed to build understanding across professional roles and specialties and to improve comfort discussing worsening prognosis and end-of-life issues.

Clinician barriers to initiating sexual health conversations with breast cancer survivors: The influence of assumptions and situational constraints.

INTRODUCTION: Sexual health (SH) is an important dimension of physical, emotional, and social functioning after breast cancer (BC). Research suggests that survivors' SH concerns are not being adequately addressed in oncology or primary care settings. It is important to understand why these conversations are not taking place and what can be done to enhance care for women in this context. This research aims to identify when clinicians initiate SH conversations with survivors and to uncover factors that influence these decisions. METHOD: Thirty-six clinicians from family medicine, internal medicine, oncology, and gynecology participated in semistructured interviews. Analysis uncovered themes that influence clinicians' decisions about initiating SH conversations with survivors. Attention was given to capturing the personal, professional, and system-level issues that inform clinicians' communication choices. RESULTS: Clinicians reported their decisions are based on (a) beliefs about patients, (b) inability to address survivors' concerns, (c) time constraints that affect the delivery of care, and (d) views of professional function in survivor health care. DISCUSSION: Clinician decisions are based on sometimes-erroneous assumptions and situational constraints. This suggests the need for medical education and support regarding SH care. Several practice points are outlined to facilitate clinicians' efforts to improve SH care for female BC survivors. (PsycINFO Database Record

Sexual functioning among early post-treatment breast cancer survivors.

PURPOSE: This study aims (1) to estimate percentages of partnered women who are sexually active over the first 2 years post-breast cancer diagnosis; (2) to identify factors related to sexual inactivity; and (3) to evaluate separately, among both sexually active and inactive survivors, the relation between sexual problems and treatment-related variables, symptoms, and psychosocial factors. METHODS: Longitudinal observational study of breast cancer survivors recruited within 8 months of cancer diagnosis and followed for 18 months. The main outcome measures were (1) being sexually active/inactive in the past month and (2) sexual problems assessed with the four-item sexual problem domain of the Quality of Life in Adult Cancer Survivors (QLACS) scale. RESULTS: At baseline, 52.4% of women reported being sexually active in the past month. This percentage increased to 60.7% 18 months later. In multivariable repeated-measures analyses, age, past chemotherapy, depressive symptoms, and lower perceived attractiveness were related to inactivity. Sexually inactive women reported more problems on the QLACS than sexually active women. In stratified multivariable analyses, depressive symptoms were related to greater sexual problems for both sexually active and inactive women, as was vaginal dryness. Among the sexually active women, younger age at diagnosis, less illness intrusiveness, and lower perceived attractiveness were related to more problems. CONCLUSIONS: Research has shown that sexual functioning/sexual health are key aspects of quality of life for many cancer survivors, and are often not addressed by health care providers. Future studies should examine how such topics are handled by clinicians in their interactions with survivors.

Experiences of "openness" between mothers and daughters during breast cancer: implications for coping and healthy outcomes.

OBJECTIVE: Mother-daughter communication is central to how women adjust to breast cancer. They may be aided by models of healthy communication that illustrate both women's perspectives. Families establish normative communication patterns that inform how they cope. We used family communication patterns theory to examine correlations between openness/avoidance and health. We extended this by capturing mother-daughter open/avoidant narratives to illustrate how these behaviors function in helpful (health-promoting) and unhelpful ways. METHODS: Phase 1 of this mixed-method study involved 41 patients and 37 mothers/daughters (N = 78) completing surveys on mother-daughter openness, avoidant coping, and quality of life. Phase 2 involved interviews with 40 patients and 38 mothers/daughters (N = 78) to ascertain what diagnosed women share (or do not share) with their mother/daughter and their reasons. RESULTS: Diagnosed women reporting more open mother-daughter bonds had better relational health (r = .730, P < .001). Those who engaged in more avoidant coping reported poorer physical health (r = -.431, P = .01). Mothers and daughters talked about treatment side effects and procedures, disease risk and prevention, and medical decisions. They avoided discussions about distressing emotions and topics as well as uncertainty about the future. Motivations to disclose/avoid centered on protecting themselves and/or their mother/daughter. Qualitative findings illustrate the tension between openness and avoidance. Developmental differences and relational role perspectives illustrate women's diverse needs. CONCLUSIONS: A history of openness is linked with relational health, but coping is not as simple as "be open." Both openness/avoidance are helpful and unhelpful depending on age, topic, and responses.

Communication about sexual health with breast cancer survivors: Variation among patient and provider perspectives.

OBJECTIVE: Breast cancer survivors experience a range of sexual health (SH) issues. Communication problems between patient and provider can prevent survivors from pursuing SH goals and can negatively influence biopsychosocial outcomes. The primary aims of this study were to identify provider communication behaviors that facilitate or impede clinical interactions regarding SH (according to survivors and providers) and to highlight discrepancies that affect care. METHODS: Forty breast cancer survivors and forty health care providers from a variety of specialties participated in semi-structured interviews informed by the Critical Incident Technique. Transcripts were thematically analyzed using the constant comparative method. RESULTS: Survivors and providers discussed the importance of honoring individual patient needs and conveying compassionate messages. However, accounts varied significantly regarding the appropriate timing and method of initiating SH discussions and the helpfulness of certain support behaviors and linguistic devices. CONCLUSION: Provider and survivor accounts of what constitutes helpful and unhelpful provider communication behaviors when discussing SH concerns are misaligned in nuanced and meaningful ways. These discrepancies reveal potential areas for educational intervention. PRACTICE IMPLICATIONS: SH discussions require providers to examine assumptions about patients' communication preferences and information needs. Patients may benefit from frank yet sensitive discussions earlier in the cancer continuum.

Influence of Provider Communication on Women's Delivery Expectations and Birth Experience Appraisal: A Qualitative Study.

BACKGROUND AND OBJECTIVES: Although current research suggests that patient-provider prenatal communication and expectation-setting affects women's outcomes, more needs to be understood about the kinds of communication experiences that shape women's expectations, the nature of expectations that women hold, and how those expectations influence their appraisal of labor and delivery. The goal of this study is to draw connections between provider communication, birth experience expectations, and birth experience appraisals. METHODS: Recently delivered mothers (n=36) were recruited at a mid-Atlantic community hospital. Using a grounded theory approach, interviews were systematically analyzed to uncover how participants perceived provider communication during their prenatal care, how participants described their expectations of the birth experience, and how expectations affected appraisals of the experience. RESULTS: Mothers recognize providers' use of patient-centered communication in messages of empowerment, emotional support, explanation, decision making, and elicitation. Findings posit that it is the inflexibility or flexibility of expectations that may determine mothers' appraisals of the birth experience. CONCLUSIONS: Mothers continue to rely on providers as partners in health care. Through patient-centered communication, providers can help mothers develop flexible expectations of the birth experience, which in turn can result in positive appraisals of delivery.

Mobile application as a prenatal education and engagement tool: A randomized controlled pilot.

OBJECTIVES: Research has shown that mobile applications provide a powerful alternative to traditional paper diaries; however, little data exists in comparing apps to the traditional mode of paper as a patient education and engagement tool in the clinical setting. This study was designed to compare the effectiveness of a mobile app versus a spiral-notebook guide throughout prenatal care. METHODS: This randomized (n=173) controlled pilot was conducted at an East Coast community hospital. Chi-square and repeated-measures analysis of variance was used to test intervention effects in the sample of 127 pregnant mothers who completed their prenatal care in the healthcare system. RESULTS: Patients who were distributed the mobile application used the tool to record information about pregnancy more frequently (p=.04) and developed greater patient activation (p=.02) than patients who were distributed notebooks. No difference was detected on interpersonal clinical communication. CONCLUSION: A mobile application successfully activated a patient population in which self-management is a critical factor. PRACTICE IMPLICATIONS: This study shows that mobile apps can prompt greater use and result in more activated patients. Findings may be translated to other patient populations who receive recurring care for chronic disease.

Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine.

In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed.

Women's Health Identities in the Transition From Military Member to Service Veteran.

As servicewomen leave behind their military rank and status to become veterans, they must learn to effectively navigate a fragmented structure of care and communicate their health care needs. This study proposes a culture-centered approach to understanding how structural changes contribute to a reduction in positive health perception and behavior as active duty servicewomen transition to a veteran status. Results suggest during the process of disengagement from military cultural norms, women veterans' health care prevention service utilization decreases, and their physical and mental health decreases through the transition. These findings highlight the need for widely available and culturally appropriate programs to meet the needs of this unique patient population.

Constructing and Communicating Privacy Boundaries: How Family Medicine Physicians Manage Patient Requests for Religious Disclosure in the Clinical Interaction.

Religion/spirituality (R/S) is an important component of some patients' psychosocial framework when facing illness. While many patients report an increased desire for R/S dialogue in clinical interaction, especially when facing a frightening diagnosis, some physicians report discomfort talking about R/S and hold various beliefs regarding the appropriateness of such discussions. Not only do physicians manage conversations centering on patient disclosures in the clinical visit, they must also navigate requests to share their own personal information. Farber et al. (2000) found that over a 12-month period nearly 40% of physicians reported that patients asked questions that transgressed professional boundaries. This article uses Petronio's communication privacy management theory as a lens through which to situate our understanding of how family medicine physicians construct and communicate privacy boundaries in response to patient requests for religious disclosure. Results provide an in-depth theoretical understanding of issues surrounding religious disclosure in the medical visit and expand the discussion on health care providers' personal and professional privacy boundaries as documented by Petronio and Sargent (2011). Implications for health care training and practice are discussed.

Using a teaching OSCE to prompt learners to engage with patients who talk about religion and/or spirituality.

PURPOSE: The objective structured clinical examination (OSCE) has only occasionally been used as a teaching tool. The authors describe the initial use of an educational innovation consisting of a teaching OSCE used as "sensitizing practice," followed by personal, guided, and group reflection. METHOD: Staff and resident physicians and one medical student (N = 28) at a community hospital's family medicine residency participated in the innovation during August 2012. The initial use of the educational innovation allowed learners to engage in a potentially challenging conversation with a standardized patient about religion and/or spirituality (R/S). The aim of the innovation was not to equip learners with a particular tactic to introduce or discuss R/S but, rather, to prompt learners to engage in mindful practice with patients who identify R/S as part of their biopsychosocial contexts. Written, dyadic, and group reflection added value to the OSCE by allowing participants to reflect on a difficult learning objective over time. RESULTS: Participants moved along the stages-of-change continuum when engaging in guided reflection compared with personal reflection. Additionally, all participants provided evidence of at least the preparation stage at the time of guided reflection. By following the OSCE's sensitizing practice with three periods of reflection, learners were enabled first, to recognize the need for readiness to address challenging communication topics (in this case, R/S) and, second, to reflect on practiced strategies for those conversations. CONCLUSIONS: The educational innovation can help learners become more aware of and skillful in dealing with difficult physician-patient communication topics.

The milspouse battle rhythm: communicating resilience throughout the deployment cycle.

Military spouses (milspouses) enact resilience through communication before, during, and after military deployments. Based on an organizing framework of resilience processes ( Buzzanell, 2010 ), this study examined milspouses' communicative construction of resilience during an increasingly rapid military deployment cycle. Narratives from in-depth interviews with military spouses (n = 24) revealed how resilience is achieved through communication seeking to reconcile the often contradictory realities of milspouses who endure physical, psychological, and social difficulties due to prolonged separations from their partners.