Communication about breast cancer genetic counseling with patients with limited health literacy or a migrant background: evaluation of a training program for healthcare professionals

Giessen, Jeanine van der; Fransen, Mirjam P.; Spreeuwenberg, Peter; Velthuizen, Mary E; Dulmen, Sandra van; Ausems, Margreet G. E. M.

doi:10.1007/s12687-020-00497-x

Cited by 9 publications

(12 citation statements)

References 40 publications

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“…Our results highlight an unmet need in training NGHPs to discuss multigene panel testing in the context of HBOC, particularly to patients with poor health literacy. In the Netherlands, the use of plain language and the teach-back method improved the competencies of NGHPs in providing genetic counseling to breast cancer patients with poor health literacy (van der Giessen et al, 2021). These methods that empower shared decision-making are important elements in the mainstreaming pathway.…”

Section: Training Needs In Mainstreamingmentioning

confidence: 99%

Attitudes and training needs of oncologists and surgeons in mainstreaming breast cancer genetic counseling in a low‐to‐middle income Asian country

Lee

Yoon

Hassan

et al. 2022

Journal of Genetic Counseling

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With the advent of poly‐ADP‐ribose polymerase inhibitor (PARPi) therapies, the focus of genetic testing for breast, ovarian, and other cancers has shifted from risk management to treatment decision‐making in high‐resource settings. Due to the shortage of genetic counselors worldwide, alternative ways of delivering genetic counseling have been explored, including training nongenetics healthcare professionals (NGHPs) to provide genetic counseling. However, little is known about the feasibility of adopting such models in healthcare settings with insufficient specialists, where population health literacy is low and where access to new therapies may be limited. In this study, we evaluated the attitudes, considerations, and self‐efficacy of oncologists, breast surgeons, and general surgeons in mainstreaming breast cancer genetic counseling in Malaysia, a middle‐income Asian country with a universal healthcare system. We developed a 32‐item survey via a modified Delphi method, which was then distributed via a purposive and network sampling approach. While 77% of respondents expressed interest in providing breast cancer genetic counseling, 85% preferred to refer patients directly to genetic services for genetic counseling and testing. The main considerations for mainstreaming were the cost of genetic testing and PARPi therapy, as well as the availability of support from genetics professionals. Respondents reported a lack of confidence in communicating genetic risk, particularly to patients with poor health literacy, and in the clinical management of patients with variants of uncertain significance. Our results highlight the urgent need to train more NGHPs in providing genetic counseling and testing in low‐to‐middle income countries, and suggest that the mainstay for genetic counseling in this setting may be for risk management rather than access to PARPi therapy.

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Section: Training Needs In Mainstreamingmentioning

confidence: 99%

Attitudes and training needs of oncologists and surgeons in mainstreaming breast cancer genetic counseling in a low‐to‐middle income Asian country

Lee

Yoon

Hassan

et al. 2022

Journal of Genetic Counseling

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“…Health literacy training among healthcare professionals uses the techniques learned in the training, such as the teach‐back method and plain language, and felt more confident about health problems in the community (van der Giessen et al., 2021). Conduct training sessions and integrate knowledge and skills, especially when developing patient communication and assessment skills related to real environmental situations and conditions with patients or community members.…”

Section: Discussionmentioning

confidence: 99%

Public health nursing: Challenges and innovations for health literacy in rural area

Pailaha

2023

Public Health Nursing

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Health literacy is a critical component of public health nursing, particularly in rural areas where access to health services is severely limited. As it relates to quality of care, cost of care, safety of care, and appropriate decision‐making in general public health, health literacy can also be seen as an important public policy issue. Several challenges that can be found in rural communities in terms of access to health literacy, such as limited access to healthcare services, limited resources, low literacy rate, cultural and language barriers, financial constraints, and digital divide. Based on these challenges, several innovations can be pursued such as community‐based health education, health literacy training among healthcare professionals, digital health technology, partnerships with community‐based organizations, health literacy radio programs, and community health ambassadors. This reflection highlights the challenges and innovations that nurses can do to overcome the problem of low‐health literacy in rural communities. In the future, the development of community empowerment and technology will be needed to refine the progress made so that a gradual increase in health literacy in rural communities can be seen.

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“…Riddle et al (2022) found that a course aimed at enhancing interpreters' preparedness for genomic results disclosure appointments was effective at improving interpreters' confidence during sessions. Alternatively, English-speaking GCs could consider trainings aimed at improving communication for limited health literacy patients, i.e., incorporating methods like the teach-back method and using simplified language in sessions, as there are several published studies on different models and interventions (Joseph et al, 2019;Riddle et al, 2021;van der Giessen et al, 2020;.…”

Section: Practice and Training Implicationsmentioning

confidence: 99%

Perspectives on Spanish language concordant cancer genetic counseling sessions from the Spanish‐speaking population

Jimenez

Matthews

Darrah

et al. 2022

Journal of Genetic Counseling

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Genetic counselors (GCs) provide risk assessment, education, and counseling about the genetic contribution to disease. To do so, they must effectively communicate, build rapport, and help patients make the best decisions for themselves and their families. Language barriers add a complex layer to this patient-provider dynamic. While interpreters serve as a primary solution when a patient and GC speak different languages, issues have been documented with these sessions, such as misinterpreted genetic terminology (Gutierrez et al., 2017). Having a GC with concordant language skills may help address these barriers. The purpose of this study was to assess Spanishspeaking patients' perspectives on communication, decision-making, and the interpersonal relationship developed with a bilingual GC in language concordant cancer genetic counseling sessions. Spanish-speaking patients, ages 18 or older, seen by a Spanish-speaking GC at a California public, safety-net hospital were eligible to participate in this study. Nine participants were interviewed via telephone by the bilingual researcher using a semi-structured interview guide to assess three domains: communication, decision-making, and interpersonal relationship. Analyses of interview transcripts identified themes within these three areas of focus: (1) participants felt all explanations were clear and they were not afraid to ask questions in the session, (2) participants experienced preference-concordant decision making, and (3) participants felt empowered and supported by the GC. Participants suggested that GCs working with Spanish-speaking patients in the future should consider group counseling sessions, engaging in outreach efforts to educate the Spanish-speaking community about genetics, and increasing the number of GCs who speak Spanish. These results demonstrate the positive experiences of Spanish-speaking patients in language concordant cancer genetic counseling sessions and further support the need for recruitment of Spanish-speaking individuals into the profession. Future research should further assess the experience of Spanish-speaking patients in language concordant sessions and address the role of cultural concordance in sessions.

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Communication about breast cancer genetic counseling with patients with limited health literacy or a migrant background: evaluation of a training program for healthcare professionals

Cited by 9 publications

References 40 publications

Attitudes and training needs of oncologists and surgeons in mainstreaming breast cancer genetic counseling in a low‐to‐middle income Asian country

Attitudes and training needs of oncologists and surgeons in mainstreaming breast cancer genetic counseling in a low‐to‐middle income Asian country

Public health nursing: Challenges and innovations for health literacy in rural area

Perspectives on Spanish language concordant cancer genetic counseling sessions from the Spanish‐speaking population

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