Literature DB >> 27271705

Family Communication in Inherited Cardiovascular Conditions in Ireland.

Sinead Whyte1,2, Andrew Green3, Marion McAllister4, Hannah Shipman5.   

Abstract

Over 100,000 individuals living in Ireland carry a mutated gene for an inherited cardiac condition (ICC), most of which demonstrate an autosomal dominant pattern of inheritance. First-degree relatives of individuals with these mutations are at a 50 % risk of being a carrier: disclosing genetic information to family members can be complex. This study explored how families living in Ireland communicate genetic information about ICCs and looked at the challenges of communicating information, factors that may affect communication and what influence this had on family relationships. Face to face interviews were conducted with nine participants using an approved topic guide and results analysed using thematic analysis. The participants disclosed that responsibility to future generations, gender, proximity and lack of contact all played a role in family communication. The media was cited as a source of information about genetic information and knowledge of genetic information tended to have a positive effect on families. Results from this study indicate that individuals are willing to inform family members, particularly when there are children and grandchildren at risk, and different strategies are utilised. Furthermore, understanding of genetics is partially regulated not only by their families, but by the way society handles information. Therefore, genetic health professionals should take into account the familial influence on individuals and their decision to attend genetic services, and also that of the media.

Entities:  

Keywords:  Communication; Family; Genetics; Inherited cardiac conditions

Mesh:

Year:  2016        PMID: 27271705     DOI: 10.1007/s10897-016-9974-5

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  31 in total

1.  Facilitating family communication about predictive genetic testing: probands' perceptions.

Authors:  Clara L Gaff; Veronica Collins; Tiffany Symes; Jane Halliday
Journal:  J Genet Couns       Date:  2005-04       Impact factor: 2.537

2.  Psychological issues in genetic testing for inherited cardiovascular diseases.

Authors:  Rajani D Aatre; Sharlene M Day
Journal:  Circ Cardiovasc Genet       Date:  2011-02

3.  Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.

Authors:  Erna Claes; Gerry Evers-Kiebooms; Andrea Boogaerts; Marleen Decruyenaere; Lieve Denayer; Eric Legius
Journal:  Am J Med Genet A       Date:  2003-01-01       Impact factor: 2.802

Review 4.  What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research.

Authors:  Kim Chivers Seymour; Julia Addington-Hall; Anneke M Lucassen; Claire L Foster
Journal:  J Genet Couns       Date:  2010-04-09       Impact factor: 2.537

5.  Men in breast cancer families: a preliminary qualitative study of awareness and experience.

Authors:  M F McAllister; D G Evans; W Ormiston; P Daly
Journal:  J Med Genet       Date:  1998-09       Impact factor: 6.318

6.  Non-uptake of predictive genetic testing for BRCA1/2 among relatives of known carriers: attributes, cancer worry, and barriers to testing in a multicenter clinical cohort.

Authors:  C Foster; D G R Evans; R Eeles; D Eccles; S Ashley; L Brooks; T Cole; J Cook; R Davidson; H Gregory; J Mackay; P J Morrison; M Watson
Journal:  Genet Test       Date:  2004

7.  We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC).

Authors:  Regina Kenen; Audrey Arden-Jones; Rosalind Eeles
Journal:  Psychooncology       Date:  2004-05       Impact factor: 3.894

8.  Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research.

Authors:  Alison Metcalfe; Jane Coad; Gill M Plumridge; Paramjit Gill; Peter Farndon
Journal:  Eur J Hum Genet       Date:  2008-04-23       Impact factor: 4.246

9.  The new genetics and its consequences for family, kinship, medicine and medical genetics.

Authors:  Kaja Finkler; Cécile Skrzynia; James P Evans
Journal:  Soc Sci Med       Date:  2003-08       Impact factor: 4.634

10.  Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicine.

Authors:  Rebecca Schaffer; Kristine Kuczynski; Debra Skinner
Journal:  Sociol Health Illn       Date:  2008-01
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  7 in total

1.  Family Relationships Associated With Communication and Testing for Inherited Cardiac Conditions.

Authors:  Lisa L Shah; Sandra Daack-Hirsch; Anne L Ersig; Anthony Paik; Ferhaan Ahmad; Janet Williams
Journal:  West J Nurs Res       Date:  2018-12-12       Impact factor: 1.967

2.  Experience of Asian males communicating cardiac genetic risk within the family.

Authors:  Sylvia Kam; Yasmin Bylstra; Laura Forrest; Ivan Macciocca; Roger Foo
Journal:  J Community Genet       Date:  2018-01-08

Review 3.  Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review.

Authors:  Lisa L Shah; Sandra Daack-Hirsch
Journal:  J Genet Couns       Date:  2018-02-28       Impact factor: 2.537

4.  A systematic literature review of disclosure practices and reported outcomes for medically actionable genomic secondary findings.

Authors:  Julie C Sapp; Flavia M Facio; Diane Cooper; Katie L Lewis; Emily Modlin; Philip van der Wees; Leslie G Biesecker
Journal:  Genet Med       Date:  2021-08-26       Impact factor: 8.864

5.  A tailored approach towards informing relatives at risk of inherited cardiac conditions: study protocol for a randomised controlled trial.

Authors:  Lieke M van den Heuvel; Yvonne M Hoedemaekers; Annette F Baas; J Peter van Tintelen; Ellen M A Smets; Imke Christiaans
Journal:  BMJ Open       Date:  2019-07-09       Impact factor: 2.692

6.  Usefulness of mobile apps for communication of genetic test results to at-risk family members in a U.S. integrated health system: a qualitative approach from user-testing.

Authors:  Cameron B Haas; Aaron Scrol; Chethan Jujjavarapu; Gail P Jarvik; Nora B Henrikson
Journal:  Health Policy Technol       Date:  2021-04-22       Impact factor: 5.211

7.  How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

Authors:  Lieke Marleen van den Heuvel; Daphne Stemkens; Wendy A G van Zelst-Stams; Floor Willeboordse; Imke Christiaans
Journal:  J Genet Couns       Date:  2019-12-30       Impact factor: 2.537

  7 in total

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