'I Live With Lynch. Cancer Worry Ebbs Into the Background, Then Something Brings It to the Fore.' A Qualitative Interview Study Exploring How Lynch Syndrome Carriers Make Sense of Their Cancer Risks and Implications to Support Decision Making.
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| Title: | 'I Live With Lynch. Cancer Worry Ebbs Into the Background, Then Something Brings It to the Fore.' A Qualitative Interview Study Exploring How Lynch Syndrome Carriers Make Sense of Their Cancer Risks and Implications to Support Decision Making. |
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| Authors: | Kohut, Kelly (AUTHOR), Morton, Kate (AUTHOR), Turner, Lesley (AUTHOR), Foster, Rebecca (AUTHOR), Bancroft, Elizabeth K. (AUTHOR), Esplen, Mary Jane (AUTHOR), Hanson, Helen (AUTHOR), Hurley, Karen (AUTHOR), Snape, Katie (AUTHOR), Eccles, Diana (AUTHOR), Foster, Claire (AUTHOR) |
| Source: | Psycho-Oncology. Sep2024, Vol. 33 Issue 9, p1-14. 14p. |
| Subjects: | Hereditary nonpolyposis colorectal cancer, Medical personnel, Disease risk factors, Cancer patients, Research questions |
| Abstract: | Background: Lynch syndrome carriers ('carriers') are presented with complex, emotionally laden choices regarding management of increased genetic cancer risks. Decision aids encourage active involvement in values‐based health decisions. This paper aimed to address the research question: How do Lynch syndrome carriers make sense of their chances of developing cancer, and what are the implications for providing support with decision making about genetic cancer risk management? Methods: Adult carriers were recruited through a genetics service or involvement with Lynch Syndrome UK. Semi‐structured interviews explored lived experiences of carriers' access to care with a focus on decision support. Themes were constructed using framework analysis. These were developed into a conceptual model with recommendations for codevelopment of improved information and support including a tailored decision aid to complement integrated healthcare. Results: Twenty participants included 12 women and eight men, half with a history of cancer. Six overarching themes were: (1) finding balance with Lynch; (2) living 'on higher alert'; (3) managing uncertainty: 'I've thought about it a lot'; (4) burden of responsibility: 'It's on me'; (5) access to joined‐up care and support: 'There's something missing'; and (6) influence/pressure from others. Conclusions: This qualitative interview study provided in‐depth insights from Lynch syndrome carriers about their lived experiences, informed by their values. Recommendations to empower carriers to make sense of genetic cancer risks and support decisions included accessible, trusted information, educated healthcare professionals, shared decision making, and joined‐up integrated care pathways complemented by tailored decision aids. [ABSTRACT FROM AUTHOR] |
| Copyright of Psycho-Oncology is the property of Wiley-Blackwell 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: | Psychology and Behavioral Sciences Collection |
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| Header | DbId: pbh DbLabel: Psychology and Behavioral Sciences Collection An: 179878634 AccessLevel: 6 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: 'I Live With Lynch. Cancer Worry Ebbs Into the Background, Then Something Brings It to the Fore.' A Qualitative Interview Study Exploring How Lynch Syndrome Carriers Make Sense of Their Cancer Risks and Implications to Support Decision Making. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Kohut%2C+Kelly%22">Kohut, Kelly</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Morton%2C+Kate%22">Morton, Kate</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Turner%2C+Lesley%22">Turner, Lesley</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Foster%2C+Rebecca%22">Foster, Rebecca</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Bancroft%2C+Elizabeth+K%2E%22">Bancroft, Elizabeth K.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Esplen%2C+Mary+Jane%22">Esplen, Mary Jane</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hanson%2C+Helen%22">Hanson, Helen</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hurley%2C+Karen%22">Hurley, Karen</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Snape%2C+Katie%22">Snape, Katie</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Eccles%2C+Diana%22">Eccles, Diana</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Foster%2C+Claire%22">Foster, Claire</searchLink> (AUTHOR) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22Psycho-Oncology%22">Psycho-Oncology</searchLink>. Sep2024, Vol. 33 Issue 9, p1-14. 14p. – Name: Subject Label: Subjects Group: Su Data: <searchLink fieldCode="DE" term="%22Hereditary+nonpolyposis+colorectal+cancer%22">Hereditary nonpolyposis colorectal cancer</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+personnel%22">Medical personnel</searchLink><br /><searchLink fieldCode="DE" term="%22Disease+risk+factors%22">Disease risk factors</searchLink><br /><searchLink fieldCode="DE" term="%22Cancer+patients%22">Cancer patients</searchLink><br /><searchLink fieldCode="DE" term="%22Research+questions%22">Research questions</searchLink> – Name: Abstract Label: Abstract Group: Ab Data: Background: Lynch syndrome carriers ('carriers') are presented with complex, emotionally laden choices regarding management of increased genetic cancer risks. Decision aids encourage active involvement in values‐based health decisions. This paper aimed to address the research question: How do Lynch syndrome carriers make sense of their chances of developing cancer, and what are the implications for providing support with decision making about genetic cancer risk management? Methods: Adult carriers were recruited through a genetics service or involvement with Lynch Syndrome UK. Semi‐structured interviews explored lived experiences of carriers' access to care with a focus on decision support. Themes were constructed using framework analysis. These were developed into a conceptual model with recommendations for codevelopment of improved information and support including a tailored decision aid to complement integrated healthcare. Results: Twenty participants included 12 women and eight men, half with a history of cancer. Six overarching themes were: (1) finding balance with Lynch; (2) living 'on higher alert'; (3) managing uncertainty: 'I've thought about it a lot'; (4) burden of responsibility: 'It's on me'; (5) access to joined‐up care and support: 'There's something missing'; and (6) influence/pressure from others. Conclusions: This qualitative interview study provided in‐depth insights from Lynch syndrome carriers about their lived experiences, informed by their values. Recommendations to empower carriers to make sense of genetic cancer risks and support decisions included accessible, trusted information, educated healthcare professionals, shared decision making, and joined‐up integrated care pathways complemented by tailored decision aids. [ABSTRACT FROM AUTHOR] – Name: AbstractSuppliedCopyright Label: Group: Ab Data: <i>Copyright of Psycho-Oncology is the property of Wiley-Blackwell 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.) |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1002/pon.9312 Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 14 StartPage: 1 Subjects: – SubjectFull: Hereditary nonpolyposis colorectal cancer Type: general – SubjectFull: Medical personnel Type: general – SubjectFull: Disease risk factors Type: general – SubjectFull: Cancer patients Type: general – SubjectFull: Research questions Type: general Titles: – TitleFull: 'I Live With Lynch. Cancer Worry Ebbs Into the Background, Then Something Brings It to the Fore.' A Qualitative Interview Study Exploring How Lynch Syndrome Carriers Make Sense of Their Cancer Risks and Implications to Support Decision Making. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Kohut, Kelly – PersonEntity: Name: NameFull: Morton, Kate – PersonEntity: Name: NameFull: Turner, Lesley – PersonEntity: Name: NameFull: Foster, Rebecca – PersonEntity: Name: NameFull: Bancroft, Elizabeth K. – PersonEntity: Name: NameFull: Esplen, Mary Jane – PersonEntity: Name: NameFull: Hanson, Helen – PersonEntity: Name: NameFull: Hurley, Karen – PersonEntity: Name: NameFull: Snape, Katie – PersonEntity: Name: NameFull: Eccles, Diana – PersonEntity: Name: NameFull: Foster, Claire IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 09 Text: Sep2024 Type: published Y: 2024 Identifiers: – Type: issn-print Value: 10579249 Numbering: – Type: volume Value: 33 – Type: issue Value: 9 Titles: – TitleFull: Psycho-Oncology Type: main |
| ResultId | 1 |
