Literature DB >> 23604904

"Nothing is absolute in life": understanding uncertainty in the context of psychiatric genetic counseling from the perspective of those with serious mental illness.

Catriona Hippman1, Zoe Lohn, Andrea Ringrose, Angela Inglis, Joanna Cheek, Jehannine C Austin.   

Abstract

No genetic tests are currently clinically available for serious mental illnesses such as schizophrenia and bipolar disorder. Rather, the full spectrum of genetic variants that confer susceptibility remain unknown, and estimates of probability of condition recurrence typically have the form of ranges rather than single absolute numbers. Genetic counselors have been shown to feel that the information that can be provided for patients with serious mental illness could be more confusing than helpful. However, how those with serious mental illness perceive this uncertainty remains unknown. So, to investigate this, individuals with serious mental illness participated in a psychiatric genetic counseling (GC) session and responded to a single open ended question about their reactions towards the uncertainty that they encountered in their GC session immediately and one month post-counseling (from which themes were identified), and completed the Genetic Counseling Satisfaction Scale immediately post-session (descriptive statistics applied). While some of the 37 participants were disappointed with the uncertainty, twice as many were unconcerned. Overall, responses from immediately and one month after GC were very similar; participants were very satisfied with, and found value in GC despite uncertainty, and four approaches to coping with uncertainty emerged. Ultimately, these findings offer insight into providing GC for those with serious mental illness, and potentially could be applied to other areas of GC where uncertainty lies, with downstream impact on GC practice and future research.

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Year:  2013        PMID: 23604904      PMCID: PMC3776779          DOI: 10.1007/s10897-013-9594-2

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


  36 in total

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Journal:  Med Decis Making       Date:  2011 Nov-Dec       Impact factor: 2.583

4.  Psychological response to prenatal genetic counseling and amniocentesis.

Authors:  K P Tercyak; S B Johnson; S F Roberts; A C Cruz
Journal:  Patient Educ Couns       Date:  2001-04

5.  Psychiatric genetic counselling for parents of individuals affected with psychotic disorders: a pilot study.

Authors:  Jehannine C Austin; William G Honer
Journal:  Early Interv Psychiatry       Date:  2008-05       Impact factor: 2.732

6.  Experience over fifteen years with a protocol for predictive testing for Huntington disease.

Authors:  Suzanne Dufrasne; Madeleine Roy; Maria Galvez; David S Rosenblatt
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7.  Factors associated with perceived uncertainty among parents of children with undiagnosed medical conditions.

Authors:  Anne C Madeo; Kathleen E O'Brien; Barbara A Bernhardt; Barbara B Biesecker
Journal:  Am J Med Genet A       Date:  2012-06-18       Impact factor: 2.802

8.  Changes in the diagnosed incidence of early onset schizophrenia over four decades.

Authors:  N Okkels; D L Vernal; S O W Jensen; J J McGrath; R E Nielsen
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9.  "Grasping the grey": patient understanding and interpretation of an intermediate allele predictive test result for Huntington disease.

Authors:  A Semaka; L G Balneaves; M R Hayden
Journal:  J Genet Couns       Date:  2012-08-18       Impact factor: 2.537

10.  Exploring genetic counselors' perceptions of and attitudes towards schizophrenia.

Authors:  Laura C Monaco; Laura Conway; Kathleen Valverde; Jehannine C Austin
Journal:  Public Health Genomics       Date:  2009-03-26       Impact factor: 2.000

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  14 in total

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2.  The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study.

Authors:  Lynley J Donoghue; Margaret A Sahhar; Ravi Savarirayan; Supriya Raj; Nicky M Kilpatrick; Laura E Forrest
Journal:  J Community Genet       Date:  2014-02-06

3.  Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model.

Authors:  Krista Redlinger-Grosse; Patricia McCarthy Veach; Stephanie Cohen; Bonnie S LeRoy; Ian M MacFarlane; Heather Zierhut
Journal:  J Genet Couns       Date:  2015-07-25       Impact factor: 2.537

4.  Evaluating a unique, specialist psychiatric genetic counseling clinic: uptake and impact.

Authors:  A Inglis; D Koehn; B McGillivray; S E Stewart; J Austin
Journal:  Clin Genet       Date:  2014-05-22       Impact factor: 4.438

5.  Training to Provide Psychiatric Genetic Counseling: How Does It Impact Recent Graduates' and Current Students' Readiness to Provide Genetic Counseling for Individuals with Psychiatric Illness and Attitudes towards this Population?

Authors:  Ashley Low; Shannan Dixon; Amanda Higgs; Jessica Joines; Catriona Hippman
Journal:  J Genet Couns       Date:  2017-09-12       Impact factor: 2.537

6.  Communication of Psychiatric Risk in 22q11.2 Deletion Syndrome: A Pilot Project.

Authors:  Sarah J Hart; Kelly Schoch; Vandana Shashi; Nancy Callanan
Journal:  J Genet Couns       Date:  2015-11-18       Impact factor: 2.537

7.  Prenatal genetic counselling for psychiatric disorders.

Authors:  Angela Inglis; Emily Morris; Jehannine Austin
Journal:  Prenat Diagn       Date:  2016-08-23       Impact factor: 3.050

8.  A pilot randomized clinical trial evaluating the impact of genetic counseling for serious mental illnesses.

Authors:  Catriona Hippman; Andrea Ringrose; Angela Inglis; Joanna Cheek; Arianne Y K Albert; Ronald Remick; William G Honer; Jehannine C Austin
Journal:  J Clin Psychiatry       Date:  2016-02       Impact factor: 4.384

9.  Teenagers and Precision Psychiatry: A Window of Opportunity.

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Journal:  Public Health Genomics       Date:  2021-01-27       Impact factor: 2.000

Review 10.  Evidence-Based Genetic Counseling for Psychiatric Disorders: A Road Map.

Authors:  Jehannine C Austin
Journal:  Cold Spring Harb Perspect Med       Date:  2020-06-01       Impact factor: 5.159

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