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1.
J Genet Couns ; 31(5): 1138-1147, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35502599

RESUMO

Strong evidence indicates following a healthy diet reduces cancer risk; however, the impact of diet education on empowerment on individuals with an increased cancer risk has not been evaluated. Study participants included patients who had met with a cancer genetic counselor without a history of cancer. Participants received pre- and post-diet education surveys including questions to measure empowerment and feedback for diet education in relation to cancer risk. Empowerment was measured using a ten-question survey adapted from the Genetic Counseling Outcome Scale. The diet education intervention consisted of viewing an infographic created for this study based on recommendations for diets that reduce cancer risk by the World Cancer Research Fund and American Institute for Cancer Research. Twenty-eight participants completed both surveys and reviewed the diet education intervention. There was no change in empowerment between pre- and post- diet education (mean change = -0.5; p = 0.49). Participants previously learned about the relationship between a healthy diet and cancer risk reduction from several sources including family and friends (25.0%), online (25.0%), and primary care providers (25.0%). Most participants preferred diet education to be delivered online (42.9%), followed by on paper (39.3%), and in-person delivery (17.9%). This pilot study promotes further investigation on the impact of diet or lifestyle education on individuals who have a predisposition to developing cancer. While the results demonstrated no change in empowerment because of diet education, the results established a desire for learning about a healthy diet related to cancer risk and preferences for the modes of delivering education.


Assuntos
Neoplasias do Colo , Aconselhamento , Dieta , Aconselhamento Genético/métodos , Humanos , Projetos Piloto
2.
J Genet Couns ; 30(5): 1233-1243, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34617357

RESUMO

The COVID-19 pandemic has altered the delivery of genetics services. In response to the pandemic, our genetics department offered telehealth visits to all outpatients, regardless of their physical proximity to Omaha, Nebraska. Traditionally, our department did not offer telehealth visits to patient's homes or to patients who lived in close proximity to a genetics clinic. Therefore, we designed a survey to gain insight into the patient experience with remote genetic counseling appointments during the pandemic. Any patient referred to see a genetics provider in pediatrics, prenatal, adult, or cancer between March 16, 2020 and October 28, 2020 was eligible for the study. The survey included both quantitative and qualitative measures to assess patient demographics, patient experience, stressors during the COVID-19 pandemic, and anxiety and depression. We hypothesized that patients would report they received quality care by telehealth despite the presence of COVID-19-related stressors or anxiety/depression. From the 143 survey participants, 80% had their first telehealth appointment during the pandemic. The vast majority (96%) reported that they felt like they received quality care by telehealth. Additionally, more than 93% of participants strongly or somewhat agreed that their genetic providers were attentive to their emotional needs, medical needs, and privacy. Since March 2020, participants reported experiencing several COVID-19-related stressors including fear of illness (86%), feelings of isolation (45%), and safety concerns (33%). Relatively low levels of depressive and anxiety symptoms were recorded using the HADS questionnaire. Despite the prevalence of COVID-19 stressors, depression, and/or anxiety, our participants felt they received quality care via telehealth. In fact, 51% agree that they prefer to receive future genetics services virtually. These results suggest the value of telehealth as an alternative service delivery model, even for local patients, and should be offered for future appointments, beyond the COVID-19 pandemic.


Assuntos
COVID-19 , Telemedicina , Adulto , Criança , Feminino , Aconselhamento Genético , Humanos , Nebraska/epidemiologia , Pandemias , Avaliação de Resultados da Assistência ao Paciente , Gravidez , SARS-CoV-2
3.
J Genet Couns ; 19(3): 217-27, 2010 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20076994

RESUMO

Publication of original research, clinical experiences, and critical reviews of literature are vital to the growth of the genetic counseling field, delivery of genetic counseling services, and professional development of genetic counselors. Busy clinical schedules, lack of time and funding, and training that emphasizes clinical skills over research skills may make it difficult for new genetic counselors to turn their thesis projects into publications. This paper summarizes and elaborates upon a presentation aimed at de-mystifying the publishing process given at the 2008 National Society of Genetic Counselors Annual Education Conference. Specific topics include familiarizing prospective authors, particularly genetic counseling students, with the basics of the publication process and related ethical considerations. Former students' experiences with publishing master's theses also are described in hopes of encouraging new genetic counselors to submit for publication papers based on their thesis projects.


Assuntos
Autoria , Educação de Pós-Graduação , Aconselhamento Genético , Editoração , Currículo , Ética Profissional , Humanos , Jornalismo , Mentores , Revisão da Pesquisa por Pares , Publicações Periódicas como Assunto , Pesquisa
4.
J Genet Couns ; 16(3): 313-24, 2007 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-17318457

RESUMO

Although GJB2/GJB6 genetic testing for non-syndromic hearing loss is available, there is no information regarding sharing of test results with family members. A qualitative study was conducted to elucidate if, how, and why parents of a child with hearing loss share GJB2/GJB6 test results with relatives. Parents whose child had testing (n = 7 positive, n = 4 negative, n = 1 inconclusive results) participated in a semi-structured interview and responses were analyzed using qualitative methods. All participants shared the test result with at least one relative, but selective non-disclosure also was observed. Reasons for, and reactions to, sharing were diverse and differed as a function of test result. In comparing the results from this study to published literature, similarities and differences were identified with regards to disclosure of genetic test results for hearing loss versus other conditions. Differences suggest that hearing loss may have unique attributes that influence responses to genetic test information. Further research is needed to replicate these findings.


Assuntos
Conexinas/genética , Família/psicologia , Testes Genéticos/psicologia , Perda Auditiva Neurossensorial/genética , Privacidade , Autorrevelação , Adaptação Psicológica , Pré-Escolar , Conexina 26 , Conexina 30 , Feminino , Aconselhamento Genético/psicologia , Variação Genética/genética , Conhecimentos, Atitudes e Prática em Saúde , Perda Auditiva Neurossensorial/psicologia , Humanos , Lactente , Masculino
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