myKinMatters intervention: developing an online intervention to support patients in communicating relevant health information to at-risk relatives
myKinMatters intervention: developing an online intervention to support patients in communicating relevant health information to at-risk relatives
Introduction: Genetic testing can reveal implications for individuals as well as their relatives. Though patients understand the importance of sharing information, especially for those with risks of preventable and treatable diseases, many relatives do not receive this in a timely fashion. Interventions which make it clear for patients whom to inform, how to inform, and what information to convey, are urgently needed.
Methods: We employed a Person Based Approach to ensure the intervention was grounded in the experiences and needs of patients attending a genomic medicine service. This involved: a meta-synthesis of previous interventions; synthesizing communication barriers/facilitators; interviewing 27 participants from the UK’s 100,000 Genomes Project; and Systems Thinking to map influences on the target behaviour.
Results: We identified several interventions to aid family communication of genetic results, though most were of poor quality, ineffective, and lacked theoretical underpinning. Interview data showed that (a) many participants had not told many or any relatives they were undergoing genomic testing, and (b) that they would like help to communicate their results to relatives. These results, along with barriers, facilitators, and influences, were used to create the intervention content.
Conclusion: myKinMatters could provide a useful additional tool for clinicians to direct patients towards. As genomic medicine becomes ever more widely available, we hope such online interventions will facilitate at least some communication with relatives that otherwise might not happen. Relatives can then make informed decisions about their own testing, surveillance, or preventative options. Future research involves piloting the intervention.
Fellowship: Health Education England
Ballard, Lisa
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Fenwick, Angela J
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
10 October 2019
Ballard, Lisa
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Fenwick, Angela J
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ballard, Lisa, Fenwick, Angela J and Lucassen, Anneke
(2019)
myKinMatters intervention: developing an online intervention to support patients in communicating relevant health information to at-risk relatives.
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Conference or Workshop Item
(Paper)
Abstract
Introduction: Genetic testing can reveal implications for individuals as well as their relatives. Though patients understand the importance of sharing information, especially for those with risks of preventable and treatable diseases, many relatives do not receive this in a timely fashion. Interventions which make it clear for patients whom to inform, how to inform, and what information to convey, are urgently needed.
Methods: We employed a Person Based Approach to ensure the intervention was grounded in the experiences and needs of patients attending a genomic medicine service. This involved: a meta-synthesis of previous interventions; synthesizing communication barriers/facilitators; interviewing 27 participants from the UK’s 100,000 Genomes Project; and Systems Thinking to map influences on the target behaviour.
Results: We identified several interventions to aid family communication of genetic results, though most were of poor quality, ineffective, and lacked theoretical underpinning. Interview data showed that (a) many participants had not told many or any relatives they were undergoing genomic testing, and (b) that they would like help to communicate their results to relatives. These results, along with barriers, facilitators, and influences, were used to create the intervention content.
Conclusion: myKinMatters could provide a useful additional tool for clinicians to direct patients towards. As genomic medicine becomes ever more widely available, we hope such online interventions will facilitate at least some communication with relatives that otherwise might not happen. Relatives can then make informed decisions about their own testing, surveillance, or preventative options. Future research involves piloting the intervention.
Fellowship: Health Education England
Slideshow
ESHG_2019 Final
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Published date: 10 October 2019
Identifiers
Local EPrints ID: 467663
URI: http://eprints.soton.ac.uk/id/eprint/467663
PURE UUID: e0b039ca-00ed-4a9d-b463-fd6975fc5c73
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Date deposited: 18 Jul 2022 18:20
Last modified: 06 Nov 2024 02:48
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Contributors
Author:
Angela J Fenwick
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