‘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
‘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
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.
Kohut, Kelly
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Morton, Kate
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Turner, Lesley
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Foster, Rebecca
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Bancroft, Elizabeth K.
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Esplen, Mary Jane
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Hanson, Helen
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Hurley, Karen
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Snape, Katie
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Eccles, Diana
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
on behalf of the CanGene-CanVar Patient Reference Panel
on behalf of the International Lynch Decision Aid Stakeholder Panel
Kohut, Kelly
62c06d25-2359-4a2a-a155-a54a8937fd8b
Morton, Kate
6fa41cd3-ba4d-476c-9020-b8ef93c7ade7
Turner, Lesley
9ce55e58-e149-4768-8618-388c3c9b7dae
Foster, Rebecca
74f75d51-0db1-4044-bd77-3ab87e6846ff
Bancroft, Elizabeth K.
192e818b-3694-4987-b466-b890669e28ca
Esplen, Mary Jane
c0267979-0ff5-4392-91ea-74bceb9d0d59
Hanson, Helen
fe4a8065-8b0d-4b30-a658-cd433570c2ec
Hurley, Karen
065956ae-1640-41ef-a279-7fab40960c30
Snape, Katie
bfd0af55-1a6d-41d0-aad6-2b3b0b4c73e2
Eccles, Diana
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Kohut, Kelly, Morton, Kate, Turner, Lesley, Foster, Rebecca, Bancroft, Elizabeth K., Esplen, Mary Jane, Hanson, Helen, Hurley, Karen, Snape, Katie, Eccles, Diana and Foster, Claire
,
on behalf of the CanGene-CanVar Patient Reference Panel and on behalf of the International Lynch Decision Aid Stakeholder Panel
(2024)
‘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.
Psycho-Oncology, 33 (9), [e9312].
(doi:10.1002/pon.9312).
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.
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Psycho-Oncology - 2024 - Kohut - I Live With Lynch Cancer Worry Ebbs Into the Background Then Something Brings It to the
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Accepted/In Press date: 31 August 2024
e-pub ahead of print date: 23 September 2024
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Local EPrints ID: 494297
URI: http://eprints.soton.ac.uk/id/eprint/494297
ISSN: 1057-9249
PURE UUID: afb5b52b-76c9-43af-8af3-dc06f5ae641d
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Date deposited: 03 Oct 2024 16:41
Last modified: 04 Oct 2024 01:47
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Contributors
Author:
Kelly Kohut
Author:
Lesley Turner
Author:
Elizabeth K. Bancroft
Author:
Mary Jane Esplen
Author:
Helen Hanson
Author:
Karen Hurley
Author:
Katie Snape
Corporate Author: on behalf of the CanGene-CanVar Patient Reference Panel
Corporate Author: on behalf of the International Lynch Decision Aid Stakeholder Panel
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