Lee Ellington

The Genetic Counseling Video Project (GCVP): Models of practice.

Genetic counseling is conceptualized as having both “teaching” and “counseling” functions; however, little is known about how these functions are articulated in routine practice. This study addresses the question by documenting, on videotape, the practices of a national sample of prenatal and cancer genetic counselors (GCs) providing routine pre‐test counseling to simulated clients (SCs). One hundred and seventy‐seven GCs recruited at two annual conferences of the National Society of Genetic Counselors (NSGC) were randomly assigned to counsel one of six female SCs of varying ethnicity, with or without a spouse, in their specialty. One hundred and fifty‐two videotapes were coded with the Roter Interaction Analysis System (RIAS) and both GCs and SCs completed evaluative questionnaires. Two teaching and two counseling patterns of practice emerged from cluster analysis. The teaching patterns included: (1) clinical teaching (31%) characterized by low psychosocial, emotional and facilitative talk, high levels of clinical exchange, and high verbal dominance; and (2) psycho‐educational teaching (27%) characterized by high levels of both clinical and psychosocial exchange, low levels of emotional and facilitative talk, and higher verbal dominance. The counseling patterns included: (1) supportive counseling (33%) characterized by low psychosocial and clinical exchange, high levels of emotional and facilitative talk, and low verbal dominance; and (2) psychosocial counseling (9%) with high emotional and facilitative talk, low clinical and high psychosocial exchange, and the lowest verbal dominance. SCs ratings of satisfaction with communication, the counselors affective demeanor, and the counselors use of non‐verbal skills were highest for the counseling model sessions. Both the teaching and counseling models seem to be represented in routine practice and predict variation in client satisfaction, affective demeanor, and nonverbal effectiveness.

Communication Analysis of BRCA1 Genetic Counseling.

In this study, we apply an existing medical communication coding system to BRCA1 genetic counseling sessions, describe the session dynamics, and explore variation in session communication. The sample was comprised of 167 members of an identified BRCA1 kindred whose pretest counseling session was audiotaped and coded using Roters Interaction Analysis System (RIAS). Three certified genetic counselors followed a research protocol that dictated areas to be covered in the counseling session. We found that it was feasible to code long, protocol driven BRCA1 sessions in a quantitative manner without the use of transcripts and capture the dialogue of all session participants. These findings support the use of RIAS in genetic counseling research. Our results indicate that these BRCA1 sessions were predominantly educational in nature with minimal dialogue devoted to psychosocial issues. We found that participant gender, presence of a client companion, and counselor identity influence session communication.

Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning

OBJECTIVE To assess the relationship between the oral literacy demand of genetic counseling sessions and the ability of low literate subjects to learn genetics-related information. METHODS Ninety-six simulated genetic counseling sessions were videotaped and shown to 312 subjects recruited to imagine themselves as the sessions client. Study measures included oral literacy demand, operationalized as: (1) use of key genetics terms; (2) informational context; (3) general language complexity; and (4) structural characteristics of dialogue interactivity. The study outcome was learning of genetics-related information. RESULTS Subjects with restricted literacy (below 8th grade level) learned more when viewing sessions with greater dialogue interactivity and more personally contextualized information. Subjects with adequate literacy skills, however, tended to learn less in low literacy demand sessions. CONCLUSION The oral literacy demand of medical dialogue represents a learning obstacle to low literate subjects. However, this may not be the case for those with greater literacy skills who can understand the complex language and process the dense informational load of high demand sessions. PRACTICE IMPLICATIONS In order to meet the educational needs of all patients, clinicians must attend to both the informativeness and the oral literacy demand of their communication.

Elderly cancer survivorship: An integrative review and conceptual framework

UNLABELLED The intersection of ageing and cancer in the phase of post-treatment survivorship represents a large and growing population with unique needs. PURPOSE The goal of this work is to review and integrate the current gerontology and oncology literature relevant to elderly cancer survivorship, to identify knowledge gaps and research opportunities and to propose a conceptual model to guide future research. The long-term, global goal is the prevention of morbidity and mortality in elderly cancer survivors by identification of vulnerable elders, maintenance of independence, tailoring of treatment, establishing intervention guidelines and planning for necessary resources within the entire trajectory of cancer survival for older survivors. METHODS Targeted and integrative review of selected literature from multiple disciplines. Search engines included PubMed, article reference lists and internet searches for epidemiological data (US Census, World Health Organization, American Cancer Society, Canadian Cancer Cancer Society, etc). RESULTS A conceptual model that incorporates the gerontologic, oncologic and personal characteristics of older cancer survivors is proposed that may provide a comprehensive approach by which to frame elderly survivorship research. CONCLUSION Cancer survivorship among the elderly is quantitatively and qualitatively different from cancer survivorship among other age groups. The current large numbers and predicted increase in elderly cancer survivors in the near future mandate attention to this population. Future research must consider the complexity of intersecting needs in the gero-oncology population.

Exploring genetic counseling communication patterns: the role of teaching and counseling approaches.

The educational and counseling models are often touted as the two primary professional approaches to genetic counseling practice. Yet, research has not been conducted to examine how these approaches are used in practice. In the present study, we conducted quantitative communication analyses of BRCA1 genetic counseling sessions. We measured communication variables that represent content (e.g., a biomedical focus) and process (e.g., passive listening) to explore whether genetic counselor approaches are consistent with prevailing professional models. The Roter Interaction Analysis System (RIAS) was used to code 167 pre-test genetic counseling sessions of members of a large kindred with an identified BRCA1 mutation. Three experienced genetic counselors conducted the sessions. Creating composite categories from the RIAS codes, we found the sessions to be largely educational in nature with the counselors and clients devoting the majority of their dialogue to providing biomedical information (62 and 40%, respectively). We used cluster analytic techniques, entering the composite communication variables and identified four patterns of session communication: Client-focused psychosocial, biomedical question and answer, counselor-driven psychosocial, and client-focused biomedical. Moreover, we found that the counselors had unique styles in which they combined the use of education and counseling approaches. We discuss the importance of understanding the variation in counselor communication to advance the field and expand prevailing assumptions.

Delay in diagnostic testing after abnormal mammography in low-income women

PURPOSE/OBJECTIVES To identify factors associated with diagnostic delay after an incomplete or abnormal mammogram among women participating in a state mammography screening program. RESEARCH APPROACH Retrospective case-control design using bivariate and multivariate logistic regression analyses to explore the associations between age, race, ethnicity, marital status, breast cancer history, and self-reported breast symptoms and delay. SETTING A statewide program of free screening mammography for women who are under- or uninsured. PARTICIPANTS 11,460 women enrolled in a free, statewide screening program from 2002-2006. METHODOLOGIC APPROACH Using the Tennessee Breast and Cervical Cancer Screening Program database, further analyses were conducted. MAIN RESEARCH VARIABLES The outcome measure was delay in completion of all diagnostic tests and was defined as women who did not complete testing within 60 days. FINDINGS Thirty-seven percent of women required follow-up, and of a subset used in the analysis, 30% experienced delay of more than 60 days. Controlling for marital status, age, and breast cancer history, women who experienced delay were more likely to be African American versus Caucasian (odds ratio [OR] = 1.45, 95% confidence interval [CI] = 1.13, 1.85) or Hispanic (OR = 0.72, 95% CI = 0.55, 0.93) and to have self-reported breast symptoms (OR = 1.50, 95% CI = 1.27, 1.77). CONCLUSIONS In a sample of women with low income needing mammography follow-up, delay was associated with three intrapersonal variables, potentially reducing the effectiveness of mammography screening for women who were African American, or Hispanic, or had self-reported breast symptoms. INTERPRETATION Nurses providing cancer screening examinations are uniquely positioned to assess the knowledge, beliefs, and resources of women using the program and to navigate women through barriers to completion. Knowledge of factors associated with delay is valuable for planning interventions and allocating program resources.

Hospice Nurse Communication with Patients with Cancer and their Family Caregivers

BACKGROUND Effective communication by hospice nurses enhances symptom management for the patient, reduces family caregiver burden and distress, and potentially improves bereavement adjustment. However, research has not kept pace with the rising use of hospice by patients with cancer and thus we know little about how hospice nurses communicate. METHODS The overriding objective of this pilot study was to provide insight into these in-home visits. Hospice nurses audiorecorded their interactions over time with family caregivers and patients with cancer. The communication within these tapes was coded using Roter Interaction Analysis System (RIAS) and analyzed. RESULTS We found that tape recording home hospice nurse visits was feasible. RIAS was suited to capture the general content and process of the home hospice encounter and the coded interactions show the range of topics and emotions that are evident in the dialogue. Implications and future directions for research are discussed.

Nurse responsiveness to cancer patient expressions of emotion

OBJECTIVE This theoretically based study examined nurse responses to cancer patient expressions of emotion using a videotaped, simulated cancer patient. METHODS This study used an experimental crossover design with a videotaped patient expressing anger, sadness, and neutral emotion to elicit nurse responses. Seventy-four nurses from eight sites participated. Responses were coded using Roter interaction analysis system. Correlations explored relationships between variables that impact communication (age, gender, work experience, trait anxiety, work stress, self-efficacy). Regression models explored the effect of variables on nurse affective responsiveness. RESULTS Patient expressions of sadness elicited more affective responses than anger. Expressions of anger or neutral emotion elicited more instrumental behaviors than sadness. Variables such as age, work stress and work experience were significantly correlated. No variables predicted affective responsiveness to patient expressions of anger or sadness. CONCLUSION Nurse communication showed significant variation in response to patient emotional expressions. Understanding the relationships between demographic, personality, and work variables, and identification of new variables that influence nurse-patient communication, has implications for interventional studies. PRACTICE IMPLICATIONS Over 90% of the participants indicated that the videotape simulation would be a useful method for teaching and practicing communication skills with patients expressing emotions.

The effect of aging and cancer on the symptom experience and physical function of elderly breast cancer survivors

The majority of cancer survivors are aged ≥65 years, yet, historically, cancer research has focused infrequently on older patients. The objective of this study was to examine predictors of physical function within a framework that integrates the gerontologic and oncologic needs of older cancer survivors.

Neuroticism, symptom presentation, and medical decision making.

In 2 studies, the authors explored whether neuroticism influences illness descriptions in a manner that affects medical decisions. In Study 1, 80 participants presented an imagined illness that was high or low in severity to a confederate medical student. Neuroticism was associated with more elaborate symptom presentations and, among high-severity participants, with more disclosures of psychosocial information. In Study 2, representative videotapes from Study 1 were selected as stimuli to be evaluated by 14 family practice residents. Residents were able to discriminate between severity conditions for low- but not for high-neuroticism participants. Residents also viewed high-neuroticism participants as less credible, less in need of medical treatment, and more in need of mental health treatment than low-neuroticism participants. Correlations suggest the report of psychosocial concerns by high-neuroticism participants contributed to these effects.