Literature DB >> 26323596

Living With Genetic Vulnerability: a Life Course Perspective.

Rebekah J Hamilton1, Nancy A Innella2, Dawn T Bounds2.   

Abstract

This is the second article of a two part series about utilizing the life course perspective (LCP) in genetic counseling. Secondary data analysis was conducted on a grounded theory, longitudinal study which provided a wide focus on living with hereditary breast and ovarian cancer (HBOC) risk. The aim of this analysis was to explore the longitudinal data for both the temporal and social context of living with BRCA mutation genetic test results. Sixteen women from two previous studies were interviewed on multiple occasions over an 8 year time period. The LCP was used to direct a thematic analysis of the data. Families experience the consequences of knowing they carry a BRCA1 or BRCA2 gene mutation long after the initial diagnosis. These women's experiences across time reflect the concepts of the LCP and show how life is changed when families know they live with a genetic vulnerability to an adult-onset and potentially life-threatening disease. Different emphases on concepts from the LCP were evident across the different age groups. For example, the group of 40-50 year old women emphasized the concept of linked lives, those in their 30's focused on human agency and women in their 20's were more focused on timing of events. This study helps give direction to healthcare providers counseling women living with a BRCA mutation.

Entities:  

Keywords:  BRCA; Hereditary breast and ovarian cancer; Life course perspective; Longitudinal study

Mesh:

Year:  2015        PMID: 26323596     DOI: 10.1007/s10897-015-9877-x

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


  36 in total

1.  Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study.

Authors:  I van Oostrom; H Meijers-Heijboer; H J Duivenvoorden; A H J T Bröcker-Vriends; C J van Asperen; R H Sijmons; C Seynaeve; A R van Gool; J G M Klijn; A Tibben
Journal:  Clin Genet       Date:  2007-01       Impact factor: 4.438

2.  Women receiving news of a family BRCA1/2 mutation: messages of fear and empowerment.

Authors:  Cheryl B Crotser; Suzanne S Dickerson
Journal:  J Nurs Scholarsh       Date:  2010-10-04       Impact factor: 3.176

3.  Cancer risks for BRCA1 and BRCA2 mutation carriers: results from prospective analysis of EMBRACE.

Authors:  Nasim Mavaddat; Susan Peock; Debra Frost; Steve Ellis; Radka Platte; Elena Fineberg; D Gareth Evans; Louise Izatt; Rosalind A Eeles; Julian Adlard; Rosemarie Davidson; Diana Eccles; Trevor Cole; Jackie Cook; Carole Brewer; Marc Tischkowitz; Fiona Douglas; Shirley Hodgson; Lisa Walker; Mary E Porteous; Patrick J Morrison; Lucy E Side; M John Kennedy; Catherine Houghton; Alan Donaldson; Mark T Rogers; Huw Dorkins; Zosia Miedzybrodzka; Helen Gregory; Jacqueline Eason; Julian Barwell; Emma McCann; Alex Murray; Antonis C Antoniou; Douglas F Easton
Journal:  J Natl Cancer Inst       Date:  2013-04-29       Impact factor: 13.506

4.  Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study.

Authors:  Iris van Oostrom; Hanne Meijers-Heijboer; Litanja N Lodder; Hugo J Duivenvoorden; Arthur R van Gool; Caroline Seynaeve; Conny A van der Meer; Jan G M Klijn; Bert N van Geel; Curt W Burger; Juriy W Wladimiroff; Aad Tibben
Journal:  J Clin Oncol       Date:  2003-10-15       Impact factor: 44.544

5.  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

6.  Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being.

Authors:  Laura M Koehly; June A Peters; Natalia Kuhn; Lindsey Hoskins; Anne Letocha; Regina Kenen; Jennifer Loud; Mark H Greene
Journal:  Psychooncology       Date:  2008-08       Impact factor: 3.894

7.  Being young, female, and BRCA positive.

Authors:  Rebekah Hamilton
Journal:  Am J Nurs       Date:  2012-10       Impact factor: 2.220

8.  Parent-child factors and their effect on communicating BRCA1/2 test results to children.

Authors:  Kenneth P Tercyak; Beth N Peshkin; Tiffani A DeMarco; Barbara M Brogan; Caryn Lerman
Journal:  Patient Educ Couns       Date:  2002-06

9.  BRCA1/2 predictive testing and gender: uptake, motivation and psychological characteristics.

Authors:  L Denayer; A Boogaerts; K Philippe; E Legius; G Evers-Kiebooms
Journal:  Genet Couns       Date:  2009

10.  Women's constructions of the 'right time' to consider decisions about risk-reducing mastectomy and risk-reducing oophorectomy.

Authors:  A Fuchsia Howard; Joan L Bottorff; Lynda G Balneaves; Charmaine Kim-Sing
Journal:  BMC Womens Health       Date:  2010-08-05       Impact factor: 2.809

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  7 in total

Review 1.  The Life Course Perspective: a Guide for Genetic Counselors.

Authors:  Rebekah J Hamilton; Nancy A Innella; Dawn T Bounds
Journal:  J Genet Couns       Date:  2015-08-27       Impact factor: 2.537

2.  Heightened perception of breast cancer risk in young women at risk of familial breast cancer.

Authors:  Rachael Glassey; Moira O'Connor; Angela Ives; Christobel Saunders; Sarah O'Sullivan; Sarah J Hardcastle
Journal:  Fam Cancer       Date:  2018-01       Impact factor: 2.375

Review 3.  Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.

Authors:  Alison L Young; Phyllis N Butow; Janine Vetsch; Veronica F Quinn; Andrea F Patenaude; Katherine M Tucker; Claire E Wakefield
Journal:  J Genet Couns       Date:  2017-06-30       Impact factor: 2.537

4.  Identification as a Mutation Carrier and Effects on Life According to Experiences of Finnish Male BRCA1/2 Mutation Carriers.

Authors:  Outi Kajula; Outi Kuismin; Helvi Kyngäs
Journal:  J Genet Couns       Date:  2018-01-13       Impact factor: 2.537

5.  The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.

Authors:  Hamizah Sa'at; Yew-Kong Lee; Sook-Yee Yoon; Siu Wan Wong; Yin Ling Woo; Kristine Barlow-Stewart; Nur Aishah Mohd Taib
Journal:  Fam Cancer       Date:  2021-02-19       Impact factor: 2.375

6.  Preferences for the provision of whole genome sequencing services among young adults.

Authors:  Christopher H Wade; Kailyn R Elliott
Journal:  PLoS One       Date:  2017-03-23       Impact factor: 3.240

7.  Re-imagining 'the patient': Linked lives and lessons from genomic medicine.

Authors:  Susie Weller; Kate Lyle; Anneke Lucassen
Journal:  Soc Sci Med       Date:  2022-02-12       Impact factor: 4.634

  7 in total

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