Literature DB >> 24399096

Balancing life with an increased risk of cancer: lived experiences in healthy individuals with Lynch syndrome.

Helle Vendel Petersen1, Mef Nilbert, Inge Bernstein, Christina Carlsson.   

Abstract

Possibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis. Four constitutions, namely, family context, interpretation and transformation, approach to risk and balancing life at risk were identified and formed the essence of the phenomenon "living with knowledge about risk." Family context influences how experiences and knowledge are interpreted and transformed into thoughts and feelings, which relates to how risk is approached and handled. The constitutions influence each other in a dynamic relationship and create a balancing act between anxiety and worry and feelings of being safe and in control.

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Year:  2014        PMID: 24399096     DOI: 10.1007/s10897-013-9682-3

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


  39 in total

1.  Predictive genetic testing for hereditary non-polyposis colorectal cancer: uptake and long-term satisfaction.

Authors:  K Aktan-Collan; J P Mecklin; H Järvinen; M Nyström-Lahti; P Peltomäki; I Söderling; A Uutela; A de la Chapelle; H Kääriäinen
Journal:  Int J Cancer       Date:  2000-01-20       Impact factor: 7.396

2.  Ethical implications of predictive DNA testing for hereditary breast cancer.

Authors:  M L Di Pietro; A Giuli; A G Spagnolo
Journal:  Ann Oncol       Date:  2004       Impact factor: 32.976

3.  Phenomenology and the foundations of psychology.

Authors:  A Giorgi
Journal:  Nebr Symp Motiv       Date:  1975

Review 4.  How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review.

Authors:  Stephanie Sivell; Glyn Elwyn; Clara L Gaff; Angus J Clarke; Rachel Iredale; Chris Shaw; Joanna Dundon; Hazel Thornton; Adrian Edwards
Journal:  J Genet Couns       Date:  2007-10-30       Impact factor: 2.537

5.  Prevalence and predictors of appropriate colorectal cancer surveillance in Lynch syndrome.

Authors:  Elena M Stoffel; Rowena C Mercado; Wendy Kohlmann; Beth Ford; Shilpa Grover; Peggy Conrad; Amie Blanco; Kristen M Shannon; Mark Powell; Daniel C Chung; Jonathan Terdiman; Stephen B Gruber; Sapna Syngal
Journal:  Am J Gastroenterol       Date:  2010-03-30       Impact factor: 10.864

6.  Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study.

Authors:  K Aktan-Collan; A Haukkala; J P Mecklin; A Uutela; H Kääriäinen
Journal:  Int J Cancer       Date:  2001-08-15       Impact factor: 7.396

7.  Genetic counseling outcomes: perceived risk and distress after counseling for hereditary colorectal cancer.

Authors:  Ann-Marie Codori; Tracy Waldeck; Gloria M Petersen; Diana Miglioretti; Jill D Trimbath; Miriam A Tillery
Journal:  J Genet Couns       Date:  2005-04       Impact factor: 2.537

8.  Validation of a self-concept scale for Lynch syndrome in different nationalities.

Authors:  Helle Vendel Petersen; Katarina Domanska; Pär-Ola Bendahl; Jiahui Wong; Christina Carlsson; Inge Bernstein; Mary Jane Esplen; Mef Nilbert
Journal:  J Genet Couns       Date:  2011-01-26       Impact factor: 2.537

9.  One to 2-year surveillance intervals reduce risk of colorectal cancer in families with Lynch syndrome.

Authors:  Hans F A Vasen; Mohamed Abdirahman; Richard Brohet; Alexandra M J Langers; Jan H Kleibeuker; Mariette van Kouwen; Jan Jacob Koornstra; Henk Boot; Annemieke Cats; Evelien Dekker; Silvia Sanduleanu; Jan-Werner Poley; James C H Hardwick; Wouter H de Vos Tot Nederveen Cappel; Andrea E van der Meulen-de Jong; T Gie Tan; Maarten A J M Jacobs; Faig Lall A Mohamed; Sijbrand Y de Boer; Paul C van de Meeberg; Marie-Louise Verhulst; Jan M Salemans; Nico van Bentem; B Dik Westerveld; Juda Vecht; Fokko M Nagengast
Journal:  Gastroenterology       Date:  2010-03-02       Impact factor: 22.682

Review 10.  Psychological consequences of predictive genetic testing: a systematic review.

Authors:  M Broadstock; S Michie; T Marteau
Journal:  Eur J Hum Genet       Date:  2000-10       Impact factor: 4.246

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  2 in total

1.  Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes.

Authors:  Helle Vendel Petersen; Birgitte Lidegaard Frederiksen; Charlotte Kvist Lautrup; Lars Joachim Lindberg; Steen Ladelund; Mef Nilbert
Journal:  Fam Cancer       Date:  2019-01       Impact factor: 2.375

2.  "I have always lived with the disease in the family": family adaptation to hereditary cancer-risk.

Authors:  Eliana Silva; Pedro Gomes; Paula M Matos; Eunice R Silva; João Silva; Catarina Brandão; Fernando Castro; Maria Carolina Neves; Célia M D Sales
Journal:  BMC Prim Care       Date:  2022-04-23
  2 in total

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