Literature DB >> 19803615

Family illness narratives of inherited cancer risk: continuity and transformation.

Allison Werner-Lin1, Daniel S Gardner.   

Abstract

Family narratives of genetic disease address multigenerational legacies of illness, guide expectations about future diagnoses and anticipated losses, and promote continuity and coherence. Yet contemporary families with histories of genetic disease face the challenge of integrating long-standing family illness narratives with technological advances in the detection and treatment of the identified disease. The authors recommend the use of narrative methods to (a) integrate multiple or competing perspectives into a comprehensive story of the illness experience, (b) accommodate historically based illness narratives to modern technological advances that enable novel trajectories, and (c) identify pathways to sustained physical and mental health through enhanced medical decision making. A case example illustrates the use of a medical genogram to track patterns of illness expression and narrative construction over multiple generations, and implications for family therapy and research are discussed.

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Year:  2009        PMID: 19803615     DOI: 10.1037/a0016983

Source DB:  PubMed          Journal:  Fam Syst Health        ISSN: 1091-7527            Impact factor:   1.950


  9 in total

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

Authors:  Helle Vendel Petersen; Mef Nilbert; Inge Bernstein; Christina Carlsson
Journal:  J Genet Couns       Date:  2014-01-08       Impact factor: 2.537

2.  Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

Authors:  Anne L Ersig; Allison Werner-Lin; Lindsey Hoskins; Jennifer Young; Jennifer T Loud; June Peters; Mark H Greene
Journal:  J Fam Nurs       Date:  2018-12-12       Impact factor: 3.818

3.  Families' experience of oncogenetic counselling: accounts from a heterogeneous hereditary cancer risk population.

Authors:  Álvaro Mendes; Liliana Sousa
Journal:  Fam Cancer       Date:  2012-06       Impact factor: 2.375

4.  Disclosing Huntington's Genetic Testing Results in the Context of Intellectual Disability and Guardianship: Using the Family Illness Narrative to Guide the Flow of Information.

Authors:  Mark B Warren; Kathryn M Schak
Journal:  J Genet Couns       Date:  2016-10-15       Impact factor: 2.537

5.  "My funky genetics": BRCA1/2 mutation carriers' understanding of genetic inheritance and reproductive merger in the context of new reprogenetic technologies.

Authors:  Allison Werner-Lin; Lisa R Rubin; Maya Doyle; Rikki Stern; Katie Savin; Karen Hurley; Michal Sagi
Journal:  Fam Syst Health       Date:  2012-06       Impact factor: 1.950

6.  Role of older generations in the family's adjustment to Huntington disease.

Authors:  Carla Roma Oliveira; Álvaro Mendes; Jorge Sequeiros; Liliana Sousa
Journal:  J Community Genet       Date:  2021-03-25

7.  Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body.

Authors:  Allison Werner-Lin; Rowan Forbes Shepherd; Jennifer L Young; Catherine Wilsnack; Shana L Merrill; Mark H Greene; Payal P Khincha
Journal:  Soc Sci Med       Date:  2022-03-17       Impact factor: 5.379

Review 8.  100 years Lynch syndrome: what have we learned about psychosocial issues?

Authors:  Eveline M A Bleiker; Mary Jane Esplen; Bettina Meiser; Helle Vendel Petersen; Andrea Farkas Patenaude
Journal:  Fam Cancer       Date:  2013-06       Impact factor: 2.375

9.  A multi-case report of the pathways to and through genetic testing and cancer risk management for BRCA mutation-positive women aged 18-25.

Authors:  Lindsey M Hoskins; Allison Werner-Lin
Journal:  J Genet Couns       Date:  2012-08-03       Impact factor: 2.537

  9 in total

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