Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment

Abstract

Objective A patient/family-centered conference was conducted at an underserved community hospital to address Latinas’ post-genetic cancer risk assessment (GCRA) medical information and psychosocial support needs, and determine the utility of the action research format. Methods Latinas seen for GCRA were recruited to a half-day conference conducted in Spanish. Content was partly determined from follow-up survey feedback. Written surveys, interactive discussions, and Audience Response System (ARS) queries facilitated the participant-healthcare professional action research process. Analyses included descriptive statistics and thematic analysis. Results The 71 attendees (41 patients and 27 relatives/friends) were primarily non-U.S. born Spanish-speaking females, mean age 43 years. Among patients, 73% had a breast cancer history; 85% had BRCA testing (49% BRCA+). Nearly all (96%) attendees completed the conference surveys and ARS queries; ≥48% participated in interactive discussions. Most (95%) agreed that the format met their personal interests and expectations and provided useful information and resources. Gaps/challenges identified in the GCRA process included pre-consult anxiety, uncertainty about reason for referral and expected outcomes, and psychosocial needs post-GCRA, such as absorbing and disseminating risk information to relatives and concurrently coping with a recent cancer diagnosis. Conclusions The combined action research and educational conference format was innovative and effective for responding to continued patient information needs and addressing an important data gap about support needs of Latina patients and family members following genetic cancer risk assessment. Findings informed GCRA process improvements and provide a basis for theory-driven cancer control research.

Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach

“…The primary reason for engaging in action research is to assist the ‘actor’ in improving and/or refining his or her actions.” [19] Compared with conventional research methods, one of the key differences is the fact that the main goal of action research is to generate knowledge and solve problems through direct involvement of the actors [20]. In recent years, action research has used tackled topics such as (1) Cross-border Peer Health Educator Programs and Latina/Family Experiences; (2) Psychosocial Needs Post-Genetic Cancer Risk Assessment; and (3) finding positive effects in breast cancer patient/family education [21-23]. However, a limited number of breast cancer-related studies are involved in the decision-making and research processes.…”

BRCA Genetic Counseling Among At‐Risk Latinas in New York City: New Beliefs Shape New Generation

“…Despite the need to focus on BRCA genetic counseling as the precursor to testing, there are only a few studies related to BRCA genetic counseling issues within at-risk Latinas. However, some of these studies are limited in that they were conducted among Latinas whom were already referred to and had made appointments for genetic cancer risk assessment (which includes counseling) based on family history (Lagos et al 2008;MacDonald et al 2008MacDonald et al , 2012. To our knowledge, the only known study conducted with at-risk Latinas who had not previously undergone BRCA genetic counseling was conducted by our research team using telephone quantitative interviews; multivariate analyses indicated competing life concerns were inversely related to intent to undergo BRCA genetic counseling, while perceived risk and physician referral were positively related to intent (Sussner et al 2013).…”

Creation and Implementation of an Environmental Scan to Assess Cancer Genetics Services at Three Oncology Care Settings

“…Many of the barriers to guideline adherence and patient receipt of genetic counseling that were found during the ES were previously reported in the literature and support the existence and prevalence of these barriers in clinical cancer genetics settings. These barriers included inconsistent or lack of referral for genetics services from a medical provider or physician, lack of knowledge dissemination to medical providers or physicians regarding guidelines for genetics referral or testing, and perceived or real lack of genetic counseling appointment availability (Brown, Hutchison, Zinberg, & McGovern, 2005; Burgess, Carmany, & Trepanier, 2016; Calzone et al, 2005; Chun et al, 2016; Cragun et al, 2015; Delikurt, Williamson, Anastasiadou, & Skirton, 2015; Demsky et al, 2013; Douma, Smets, & Allain, 2016; Eichmeyer, Burnham, Sproat, Tivis, & Beck, 2014; Elnahal, Clancy, & Shulkin, 2017; Hamilton et al, 2016; Kinney et al, 2014; Macdonald et al, 2012; McCarthy et al, 2016; Nair et al, 2017; Ridge et al, 2009; Schwartz et al, 2014; Sperber et al, 2016; Stuckey et al, 2014; Sussner, Jandorf, & Valdimarsdottir, 2011; Vadaparampil, Scherr, Cragun, Malo, & Pal, 2015; Willis et al, 2016).…”