Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers

Campbell‐Salome, Gemme; Buchanan, Adam H.; Hallquist, Miranda L. G.; Rahm, Alanna Kulchak; Rocha, Heather; Sturm, Amy C.

doi:10.1016/j.pec.2020.07.017

Cited by 19 publications

(16 citation statements)

References 37 publications

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“…This finding suggests that this general population, which was unselected for personal or family history of disease, may distinguish to a greater extent between genetic information and other types of health information. This hypothesis is also supported by the lack of relationship between health information seeking and interest in genetic testing, suggesting that genetic testing may not be seen as a way to learn more about one’s health and manage health risks, as has been suggested by prior studies conducted in cancer genetic counseling ( Rauscher, 2017 ; Campbell-Salome et al, 2021 ). In supporting informed decisions about genetic testing as part of routine care, therefore, educational approaches should clearly state what the testing would—and would not—provide in terms of genetic and health risk information.…”

Section: Discussionmentioning

confidence: 87%

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

et al. 2022

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Sequencing technologies can inform individuals’ risks for multiple conditions, supporting population-level screening approaches. Prior research examining interest in genetic testing has not generally examined the context of population-based approaches offered in routine healthcare or among ethnically diverse populations. Cancer predisposition testing and carrier screening could be offered broadly to women of reproductive age. This study therefore examined interest in these tests when offered as part of routine care, and predictors of interest, among an ethnically diverse sample of women aged 20–35. We conducted an online English-language survey of 450 women; 39% identified as Latina. We examined predictors of interest for two outcomes, interest in testing in the next year and level of interest, in multivariable logistic regression models and stratified analyses by Latina ethnicity. More than half of respondents reported being interested in cancer predisposition testing (55%) and carrier screening (56%) in the next year; this did not differ by ethnicity. About 26% reported being very interested in cancer predisposition testing and 27% in carrier screening. Latina respondents (32%) were more likely to be very interested in cancer predisposition testing than non-Latina respondents (22%; p < 0.03). In multivariable models, having higher worry about genetic risks, higher genetic knowledge, and higher perceived importance of genetic information were associated with higher interest across multiple models. Predictors of interest were generally similar by ethnicity. Our findings show substantial interest in both cancer predisposition testing and carrier screening among young women as part of routine healthcare with similar interest between Latina and non-Latina women. Efforts to broadly offer such testing could be important in improving access to genetic information. It will be critical to develop tools to help healthcare providers communicate about genetic testing and to address the needs of those who have less prior knowledge about genetics to support informed decision making.

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Section: Discussionmentioning

confidence: 87%

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

et al. 2022

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“…The results of this study are consistent with previous research, which suggests that internationally, LS carriers encounter certain challenges within healthcare. These include the individual having to act as their own advocate, managing and organising surveillance and medical care, and a lack of knowledge of the implications of LS within the healthcare community J o u r n a l P r e -p r o o f (Campbell-Salome et al, 2021;Etchegary et al, 2015;Tan and Fitzgerald, 2014). These are often experienced as tiring and burdensome (Watkins et al, 2011).…”

Section: Discussionmentioning

confidence: 99%

“…Most of the literature to date has focused on the psychological impact and aftermath immediately following genetic testing or counselling for cancers specific to LS. Previous qualitative studies on LS carriers have focused on the aftermath of prophylactic surgery in women, insurance barriers, and lack of LS knowledge in the medical community (Campbell-Salome et al, 2021;Etchegary et al, 2015). This study aims to explores the subjective experiences of those living with LS, in a bid to further understand its psychosocial impact.…”

Section: Rationale For This Studymentioning

confidence: 99%

Experiences of living with Lynch Syndrome: A reflexive thematic analysis

Warner

Groarke

Gleeson

et al. 2022

European Journal of Oncology Nursing

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“…Menurut teori ini, kecemasan manuasia dalam situasi sosial mempengaruhi manajemen kecemasan dirinya sehingga mereka cenderung merasa tidak aman dan tidak yakin saat bersikap. Kecemasan yang dialami oleh khalayak terkait dengan rasa cemas dan khawatir karena memiliki informasi yang dapat membuat dirinya merasa tidak aman sehingga mereka merasakan bahwa tingkat kecemasan diri mereka juga meningkat setelah mendengar informasi dari televisi terkait dengan kematian akibat COVID-19 di Indonesia (Campbell-Salome et al, 2021). Berdasarkan tinjauan pustaka yang berisi teori-teori yang berhubungan dengan media massa televisi.…”

Section: Pendahuluanunclassified

Frekuensi Menonton Pemberitaan Televisi tentang Kematian Akibat COVID-19 Berkontribusi pada Kecemasan Mahasiswa di Kota Tangerang

Marta¹,

Desyana

Shinta

et al. 2022

Jurnal KMP

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Penelitian ini berkenaan dengan maraknya pemberitaan kematian akibat COVID-19 di televisi untuk diukur dampaknya dalam menciptakan kecemasan pada kalangan mahasiswa di Kota Tangerang dalam melakukan berbagai aktivitas kesehariannya. Tujuan penelitian ini untuk mengetahui kontribusi dari intensitas frekuensi menonton tayangan pemberitaan kematian akibat COVID-19 di televisi pada tingkat kecemasan mahasiswa kota Tangerang. Metode penelitian ini menggunakan paradigma positivistik dengan metode survei yang melibatkan kehandalan teknologi berjejaring terfasilitasi google form untukdisebarkan kepada mahasiswa Kota Tangerang. Penelitian ini dilakukan melibatkan sejumlah analisis terperinci, mulai dari Pengujian Validitas dan Reliabilitas instrumen riset, kemudian dilanjutkan dengan Uji Normalitas, Uji Heteroskedastisitas, hingga diakhiri dengan Uji T sebagai upaya pemerolehan jawaban atas hipotesis penelitian. Hasil penelitian ini menunjukkan bahwa adanya tingkat kecemasan akibat tontonan pemberitaan kematian akibat COVID-19 dengan frekuensi yang cukup sering. Sejalan dengan Hypodermic Needle Theory bahwa media massa mempunyai kekuatan yang sangat besar dalam membentuk perubahan perilaku manusia. Didukung pula Teori Kultivasi yang memandang bahwa semakin lama menonton televisi maka khalayaknya dapat membayangkan berita di televisi menjadi senyata-nyatanya terjadi pada diri dan/atau sekeliling terdekat kita. Hasil penelitian mengimplikasi bahwa pesan yang didistribusikan televisi mengenai Pandemi COVID-19 dapat memberikan efek kepanikan kepada khalayak. Temuan ini didukung oleh frekuensi khalyaak menerima informasi COVID-19 yang mempengaruhi tingkat kecemasan, sehingga perubahan perilaku dalam khalayak menjadi lebih jelas.

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Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers

Cited by 19 publications

References 37 publications

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

Experiences of living with Lynch Syndrome: A reflexive thematic analysis

Frekuensi Menonton Pemberitaan Televisi tentang Kematian Akibat COVID-19 Berkontribusi pada Kecemasan Mahasiswa di Kota Tangerang

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