Improving follow up after predictive testing in Huntington's disease: evaluating a genetic counselling narrative group session.

J Community Genet 2019 Apr 18. Epub 2019 Apr 18.

Division of Evolution and Genomic Sciences, School of Biological Science, University of Manchester, Manchester, UK.

Recently updated Huntington's disease (HD) predictive testing guidelines emphasise clinicians' responsibility to facilitate emotional support following testing, regardless of the result. Yet models of post-test counselling support are poorly defined. Moreover, it is unclear how these might be best delivered. In this project, a genetic counsellor and clinical psychologist developed standalone group sessions using collective narrative practices for individuals post-predictive testing. Here we present an evaluation of the experiences of one group of six people who have tested mutation positive for HD and remain pre-symptomatic. Two partners also attended the session. Observations, evaluation forms and telephone interviews were used in data collection. Interview data was available from five mutation-positive individuals and one partner. Qualitative data were analysed using a thematic framework approach. Responses were overwhelmingly positive, emphasising the importance of a specifically arranged time and space to share experiences in a structured way. This was typically the first time participants had spoken openly with someone in their situation. Narrative facilitation of discussion encouraged participants to re-discover their strengths and resiliences, with similar experiences being discovered through connections with others. The evaluation was successful in implementing group narrative interventions as part of the predictive test counselling support for Huntington's disease. Participants suggested that the approach could be extended and adopted for other genetic conditions.

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April 2019
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(Supplied by CrossRef)
Article in J Huntingtons Dis
LE A’Campo et al.
J Huntingtons Dis 2012
Article in Am J Hum Genet
EW Almqvist et al.
Am J Hum Genet 1999
Article in Clin Genet
EW Almqvist et al.
Clin Genet 2003
Article in Nurs Ethics
PL Andersson et al.
Nurs Ethics 2016
Article in Am J Fam Ther
C Barnard et al.
Am J Fam Ther 1994
Article in Am J Hum Genet
CM Benjamin et al.
Am J Hum Genet 1994
Article in Am J Med Genet
M Bloch et al.
Am J Med Genet 1992
Article in Eur J Hum Genet
M Broadstock et al.
Eur J Hum Genet 2000
Article in Fam Process
AC Brouwer-Dudokdewit et al.
Fam Process 2002

J Byng-Hall et al.
Article in Am J Med Genet
AM Codori et al.
Am J Med Genet 1994

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