Literature DB >> 15789154

(Mis)alignments in counseling for Huntington's Disease predictive testing: clients' responses to reflective frames.

Srikant Sarangi1, Kristina Bennert, Lucy Howell, Angus Clarke, Peter Harper, Jonathon Gray.   

Abstract

As a sequel to an earlier paper (Sarangi et al., 2004. J Genet Couns, 13(2), 135-155) examining genetic counselors' initiation of reflective frames, in this paper we analyze the variable ways in which clients respond to such reflective frames in the clinical setting. Of the six types of reflective questions identified, we focus on two types, which recur throughout the counseling protocol: (i) questions about clients' decisions to have genetic testing and (ii) questions exploring the potential impact of a positive or negative test result. The analytic focus here is on the mismatches surrounding clients' apparent readiness to discuss coping with the onset of disease (risk of disease) when they have been asked to discuss coping with genetic test results (risk of knowing). Our theoretical discussion is centered around the notion of alignment as a framework for locating the convergence and divergence of counselors' and clients' agendas in interaction. Drawing on detailed transcripts of 24 Huntington's Disease counseling consultations in South Wales, we analyze 119 counselor-client question-response sequences using the methodology of discourse analysis. Preliminary coding of clients' responses led us to identify three recurrent themes: (a) gaining knowledge as a basis for future action; (b) needing to know as a subjective necessity; and (c) downplaying what can be known. In a further analysis of extended data extracts, we draw attention to how clients display varying degrees of engagement with regard to the testing process and outcomes along the temporal and social axes. At one extreme, clients may take up the opportunity to engage in self-reflection, and thus endorse the legitimacy of the reflective frame. At the other extreme, clients may implicitly or explicitly challenge the relevance of self-reflection, and hence the usefulness of this counselor-initiated routine. We suggest that clients' varied response behaviors result from the perceived need of some clients to display their 'readiness' for predictive testing-an overarching 'meta-question' posed by the very existence of the counseling protocol.

Entities:  

Mesh:

Year:  2005        PMID: 15789154     DOI: 10.1007/s10897-005-1498-3

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


  15 in total

1.  Constructing an account by contrast in counselling for childhood genetic testing.

Authors:  Srikant Sarangi; Angus Clarke
Journal:  Soc Sci Med       Date:  2002-01       Impact factor: 4.634

2.  Genetic counselling protocols for hereditary non-polyposis colorectal cancer: a survey of UK regional genetics centres.

Authors:  K Brain; J Soldan; J Sampson; J Gray
Journal:  Clin Genet       Date:  2003-03       Impact factor: 4.438

3.  Predictive testing for Huntington's disease: I. Predictors of uptake in South Wales.

Authors:  J Binedell; J R Soldan; P S Harper
Journal:  Clin Genet       Date:  1998-12       Impact factor: 4.438

4.  Psychological impact of news of genetic risk for Huntington disease.

Authors:  M J Horowitz; N P Field; A Zanko; E F Donnelly; C Epstein; F Longo
Journal:  Am J Med Genet       Date:  2001-10-15

5.  Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. The Rotterdam/Leiden Genetics Workgroup.

Authors:  A C DudokdeWit; A Tibben; H J Duivenvoorden; P G Frets; M W Zoeteweij; M Losekoot; A van Haeringen; M F Niermeijer; J Passchier
Journal:  J Med Genet       Date:  1997-05       Impact factor: 6.318

6.  Impact of genetic testing for Huntington disease on the family system.

Authors:  S K Sobel; D B Cowan
Journal:  Am J Med Genet       Date:  2000-01-03

7.  Predictive DNA-testing for Huntington's disease and reproductive decision making: a European collaborative study.

Authors:  Gerry Evers-Kiebooms; Kurt Nys; Peter Harper; Moniek Zoeteweij; Alexandra Dürr; Gioia Jacopini; Christos Yapijakis; Sheila Simpson
Journal:  Eur J Hum Genet       Date:  2002-03       Impact factor: 4.246

8.  Predictive testing for Huntington disease in Canada: adverse effects and unexpected results in those receiving a decreased risk.

Authors:  M Huggins; M Bloch; S Wiggins; S Adam; O Suchowersky; M Trew; M Klimek; C R Greenberg; M Eleff; L P Thompson
Journal:  Am J Med Genet       Date:  1992-02-15

9.  Psychological costs and benefits of predictive testing for Huntington's disease.

Authors:  A M Codori; J Brandt
Journal:  Am J Med Genet       Date:  1994-09-15

10.  Psychological distress in the 5-year period after predictive testing for Huntington's disease.

Authors:  Marleen Decruyenaere; Gerry Evers-Kiebooms; Trees Cloostermans; Andrea Boogaerts; Koen Demyttenaere; René Dom; Jean Pierre Fryns
Journal:  Eur J Hum Genet       Date:  2003-01       Impact factor: 4.246

View more
  5 in total

1.  Ethical tensions in genetic counselling research.

Authors:  Mary-Anne Young
Journal:  Monash Bioeth Rev       Date:  2011-03

2.  Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.

Authors:  Jesús Rivera-Navarro; Esther Cubo; Natividad Mariscal
Journal:  J Genet Couns       Date:  2015-04-30       Impact factor: 2.537

3.  Initiation of reflective frames in counseling for Huntingtons Disease predictive testing.

Authors:  Srikant Sarangi; Kristina Bennert; Lucy Howell; Angus Clarke; Peter Harper; Jonathon Gray
Journal:  J Genet Couns       Date:  2004-04       Impact factor: 2.537

4.  Genetic counseling/consultation in South-East Asia: a report from the workshop at the 10th Asia pacific conference on human genetics.

Authors:  Olga Zayts; Srikant Sarangi; Meow-Keong Thong; Brian Hon-yin Chung; Ivan Fao-man Lo; Anita Sik-yau Kan; Juliana Mei-har Lee; Carmencita David Padilla; Eva Maria Cutiongco-de la Paz; Sultana M H Faradz; Pornswan Wasant
Journal:  J Genet Couns       Date:  2013-09-19       Impact factor: 2.537

5.  Decreasing uptake of predictive testing for Huntington's disease in a German centre: 12 years' experience (1993-2004).

Authors:  Christiane Bernhardt; Anne-Marie Schwan; Peter Kraus; Joerg Thomas Epplen; Erdmute Kunstmann
Journal:  Eur J Hum Genet       Date:  2008-09-10       Impact factor: 4.246

  5 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.