Literature DB >> 12698598

Ambiguous loss and disenfranchised grief: the impact of DNA predictive testing on the family as a system.

Susan Sobel1, C Brookes Cowan.   

Abstract

DNA predictive testing to diagnose the presence of hereditary disease in asymptomatic individuals has become increasingly available. Information provided by these tests has implications for all relatives. In an exploratory study we examined the impact, from the family's perspective, of predictive DNA testing for Huntington disease on the family as a system. Central to their stories was a sense of loss and grief that was perhaps unique to the testing situation. The description of these losses is presented in the context of ambiguous loss as defined by Boss, disenfranchised grief as presented by Doka, and anticipatory grief as addressed by Rolland. These theories suggest clinical interventions that can be used by healthcare professionals to help families adjust to the psychosocial consequences of testing.

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Year:  2003        PMID: 12698598     DOI: 10.1111/j.1545-5300.2003.00047.x

Source DB:  PubMed          Journal:  Fam Process        ISSN: 0014-7370


  18 in total

1.  What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing.

Authors:  Kathryn Holt
Journal:  J Genet Couns       Date:  2006-08       Impact factor: 2.537

Review 2.  Impact of presymptomatic genetic testing on young adults: a systematic review.

Authors:  Lea Godino; Daniela Turchetti; Leigh Jackson; Catherine Hennessy; Heather Skirton
Journal:  Eur J Hum Genet       Date:  2015-07-15       Impact factor: 4.246

3.  "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

4.  Parents' communication with siblings of children affected by an inherited genetic condition.

Authors:  Gillian Plumridge; Alison Metcalfe; Jane Coad; Paramjit Gill
Journal:  J Genet Couns       Date:  2011-04-19       Impact factor: 2.537

5.  Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.

Authors:  Alison Metcalfe; Gill Plumridge; Jane Coad; Andrew Shanks; Paramjit Gill
Journal:  Eur J Hum Genet       Date:  2011-02-16       Impact factor: 4.246

6.  An exploration of the experience of Huntington's disease in family dyads: an interpretative phenomenological analysis.

Authors:  Caroline Maxted; Jane Simpson; Stephen Weatherhead
Journal:  J Genet Couns       Date:  2013-11-10       Impact factor: 2.537

7.  Genetics and genetic counseling: recommendations for Alzheimer's disease, frontotemporal dementia, and Creutzfeldt-Jakob disease.

Authors:  Jennifer Williamson; Susan LaRusse
Journal:  Curr Neurol Neurosci Rep       Date:  2004-09       Impact factor: 5.081

8.  The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews.

Authors:  Heather A Douglas; Rebekah J Hamilton; Robin E Grubs
Journal:  J Genet Couns       Date:  2009-05-29       Impact factor: 2.537

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

10.  Waiting and "weighted down": the challenge of anticipatory loss for individuals and families with Li-Fraumeni Syndrome.

Authors:  Allison Werner-Lin; Jennifer L Young; Catherine Wilsnack; Shana L Merrill; Victoria Groner; Mark H Greene; Payal P Khincha
Journal:  Fam Cancer       Date:  2020-07       Impact factor: 2.375

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