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

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Title: Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers.
Authors: Campbell-Salome, Gemme1 (AUTHOR) gcampbell1@geisinger.edu, Buchanan, Adam H.1 (AUTHOR), Hallquist, Miranda L.G.1 (AUTHOR), Rahm, Alanna K.1 (AUTHOR), Rocha, Heather1 (AUTHOR), Sturm, Amy C.1 (AUTHOR)
Source: Patient Education & Counseling. Feb2021, Vol. 104 Issue 2, p403-412. 10p.
Subject Terms: *Communication, Hereditary nonpolyposis colorectal cancer, Uncertainty, Family communication, Risk perception, Telephone interviewing, Patient satisfaction
Abstract: Objective: Examine the uncertainty management process of individuals with Lynch syndrome (LS).Methods: 19 phone interviews were conducted with individuals with LS. The interview guide included questions on family communication, risk perceptions, and uncertainty management. Data were analyzed using the constant comparison method to code for emergent themes.Results: Qualitative analysis found individuals with LS tried to manage their uncertainty through preventive care, but were often confounded by healthcare barriers. Healthcare barriers included cost and insurance issues, absence of coordinated care, insufficient provider knowledge, and lack of patient-centered communication. Participants reported increased uncertainty and anxiety due to these barriers and used alternative uncertainty management strategies such as advocating for themselves with providers, seeking information online, and communicating with family for emotional support.Conclusion: Healthcare barriers identified in this study exacerbated uncertainty and anxiety for individuals with LS and challenged their ability to engage in preventive care. In response, participants used alternative uncertainty management strategies to reduce their uncertainty, which may have unintended negative consequences.Practice Implications: Findings support the need for providers to partner with specialists in genetics and/or LS to better care for individuals with LS. Findings highlight opportunities for interventions in healthcare to better support individuals with LS. [ABSTRACT FROM AUTHOR]
Copyright of Patient Education & Counseling is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Education Research Complete
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  Availability: 0
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DbLabel: Education Research Complete
An: 148365517
AccessLevel: 6
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
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  Data: Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers.
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  Data: <searchLink fieldCode="AR" term="%22Campbell-Salome%2C+Gemme%22">Campbell-Salome, Gemme</searchLink><relatesTo>1</relatesTo> (AUTHOR)<i> gcampbell1@geisinger.edu</i><br /><searchLink fieldCode="AR" term="%22Buchanan%2C+Adam+H%2E%22">Buchanan, Adam H.</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hallquist%2C+Miranda+L%2EG%2E%22">Hallquist, Miranda L.G.</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Rahm%2C+Alanna+K%2E%22">Rahm, Alanna K.</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Rocha%2C+Heather%22">Rocha, Heather</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Sturm%2C+Amy+C%2E%22">Sturm, Amy C.</searchLink><relatesTo>1</relatesTo> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Patient+Education+%26+Counseling%22">Patient Education & Counseling</searchLink>. Feb2021, Vol. 104 Issue 2, p403-412. 10p.
– Name: Subject
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  Data: *<searchLink fieldCode="DE" term="%22Communication%22">Communication</searchLink><br /><searchLink fieldCode="DE" term="%22Hereditary+nonpolyposis+colorectal+cancer%22">Hereditary nonpolyposis colorectal cancer</searchLink><br /><searchLink fieldCode="DE" term="%22Uncertainty%22">Uncertainty</searchLink><br /><searchLink fieldCode="DE" term="%22Family+communication%22">Family communication</searchLink><br /><searchLink fieldCode="DE" term="%22Risk+perception%22">Risk perception</searchLink><br /><searchLink fieldCode="DE" term="%22Telephone+interviewing%22">Telephone interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+satisfaction%22">Patient satisfaction</searchLink>
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  Data: <bold>Objective: </bold>Examine the uncertainty management process of individuals with Lynch syndrome (LS).<bold>Methods: </bold>19 phone interviews were conducted with individuals with LS. The interview guide included questions on family communication, risk perceptions, and uncertainty management. Data were analyzed using the constant comparison method to code for emergent themes.<bold>Results: </bold>Qualitative analysis found individuals with LS tried to manage their uncertainty through preventive care, but were often confounded by healthcare barriers. Healthcare barriers included cost and insurance issues, absence of coordinated care, insufficient provider knowledge, and lack of patient-centered communication. Participants reported increased uncertainty and anxiety due to these barriers and used alternative uncertainty management strategies such as advocating for themselves with providers, seeking information online, and communicating with family for emotional support.<bold>Conclusion: </bold>Healthcare barriers identified in this study exacerbated uncertainty and anxiety for individuals with LS and challenged their ability to engage in preventive care. In response, participants used alternative uncertainty management strategies to reduce their uncertainty, which may have unintended negative consequences.<bold>Practice Implications: </bold>Findings support the need for providers to partner with specialists in genetics and/or LS to better care for individuals with LS. Findings highlight opportunities for interventions in healthcare to better support individuals with LS. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Patient Education & Counseling is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=ehh&AN=148365517
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              Text: Feb2021
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