Genetic counseling processes and strategies for racially and ethnically diverse populations: A systematic review

Shete, Mrunmayee; Kocher, Megan; Pratt, Rebekah; Lee, Heewon; Zierhut, Heather

doi:10.1002/jgc4.1773

Cited by 3 publications

(1 citation statement)

References 74 publications

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“…To ensure findings are culturally informed, and future applications are feasibly implementable into practice, community members and genetic counselors must be engaged in shaping the strategies used in GC research. While participatory research is not common in GC studies, [28][29][30][31][32] engaging key stakeholders throughout the research process using community-based participatory research (CBPR) approaches can improve the reliability and equity of research, as well as increase the applicability and dissemination of research findings that could be implemented to reduce health disparities in GC. 33 34 The objective of the Genetic Counseling Processes Result in Outcomes (GC-PRO) study is to characterize GC communication skills using a novel and pragmatic measure and link variations in communication skills and session characteristics to patient-reported outcomes in a diverse sample.…”

Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study

Fisher,

Cragun,

Dedrick

et al. 2024

BMJ Open

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IntroductionIn over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice.Methods and analysisA mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis.Ethics and disseminationThis study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study’s CABs. A lay summary will also be disseminated to all participants.

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Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study

Fisher,

Cragun,

Dedrick

et al. 2024

BMJ Open

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Raising awareness and education of genetic testing and counseling through fotonovelas among Latina women at risk for hereditary breast and ovarian cancer

Barajas,

Ramos

et al. 2024

J Community Genet

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Latinas are less likely to receive genetic counseling and genetic testing (GCT) compared to non-Latina Whites because of systemic and patient-level barriers. We developed and tested fotonovelas to increase awareness of GCT among Latinas at-risk of hereditary breast and ovarian cancer (HBOC). Content for the fotonovelas was drawn from an existing culturally targeted narrative video focused on improving GCT use among Latinas at-risk of HBOC. Using mixed methods, we interviewed cancer patients (n = 10) and their relatives (n = 10) to assess the preliminary efficacy of the fotonovelas through pre-and post-fotonovela items assessing self-rated knowledge of GCT and willingness to discuss cancer with family. Health workers (n = 10) provided feedback on the fotonovela content. McNemar’s test was used to examine differences in the proportions of the outcomes pre- and post-fotonovelas. Interviews were transcribed and coded in Dedoose using a consensual qualitative research approach. Reading the fotonovelas increased self-rated knowledge of GCT by 22% (p = 0.16), from 50 to 60% in patients and from 63 to 100% among relatives. Analogously, reading the fotonovela increased willingness to talk about cancer with family by 33% (p = 0.02), from 70 to 100% in patients and from 38 to 75% in relatives. We identified six themes, some centered around the fotonovela’s message, feedback, and perceived barriers to GCT. Overall, participants liked the use of fotonovelas to increase GCT awareness and cancer conversations with family. Fotonovelas could potentially be used as educational tools to increase GCT awareness and cancer conversations among Latino families at-risk of HBOC.

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Engaging communities: A scoping literature review of community-based participatory research in genetics service delivery settings

Zierhut,

Kandikonda,

Simon

et al. 2024

J Community Genet

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Genetic counseling (GC) services have the potential to improve health outcomes, yet there are documented disparities in the use of GC services among minoritized racial/ethnic populations. Community-based participatory research (CBPR) is an approach to integrate diverse patient perspectives to improve GC services. The objective of this review was to assess the current state of international CBPR within GC and genetics services from 2006 to 2023. Five databases were searched for inclusion criteria: 1) published in 2006 or later; 2) peer-reviewed publication; 3) primary research studies; 4) community-based AND participatory research; 5) focused on GC, clinical genetics, testing, and/or genetic service delivery. Criteria for evaluating CBPR involvement used a synthesis of best processes framework. Screening of 3,824 studies identified 16 papers ( n = 12 qualitative; n = 1 quantitative; n = 3 mixed methods). The majority of studies were conducted within the U.S. ( n = 12), focused on cancer ( n = 5), involved the Asian/Pacific Islander community ( n = 8), and centered around genetic education ( n = 12). Community partners most frequently were involved in recruitment ( n = 12) and results analysis ( n = 12) and least involved in research question development ( n = 7) and product creation ( n = 6). Studies varied substantially in the integration of 9 CBPR gold standard principles with only three studies addressing all nine principles. Few CBPR projects in GC services exist and a lack of guidelines to assess the quality of CBPR methodologies hindered the appraisal of studies. CBPR represents a promising approach to improve GC services and should be explored by genetics service delivery researchers. Supplementary Information The online version contains supplementary material available at 10.1007/s12687-024-00740-9.

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Genetic counseling processes and strategies for racially and ethnically diverse populations: A systematic review

Cited by 3 publications

References 74 publications

Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study

Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study

Raising awareness and education of genetic testing and counseling through fotonovelas among Latina women at risk for hereditary breast and ovarian cancer

Engaging communities: A scoping literature review of community-based participatory research in genetics service delivery settings

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