Genetic Counselling and Narrative Practices: A Model of Support following a "Negative" Predictive Test for Huntington's Disease

Rhona MacLeod, Ramona Moldovan, Cheryl Stopford, Mariangels Ferrer-Duch

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Predictive testing for Huntington's disease (HD) has been available for individuals at risk of HD by direct mutation analysis since 1993. International Predictive test guidelines recommend that support is offered following the result regardless of test outcome. However, there is lack of an evidence base regarding what this support should look like and how it might work in practice.

Objective: A service improvement initiative looked at the feasibility of offering a narrative group session co-facilitated by a genetic counsellor and clinical psychologist, to individuals who had tested mutation negative for HD. The narrative session was evaluated from the perspective of group participants.

Methods: Individuals who tested mutation negative at a genetic centre in the North of England over a 5-year period were invited to attend a narrative group session. 52 people were contacted and 9 people agreed to participate. Participants completed standardised questionnaires (PHQ-9 and GAD-7) before and after the session and a detailed written evaluation. Participants' comments were analysed thematically.

Results: Participants were overwhelmingly positive about the narrative session finding it a safe and enjoyable way to explore difficult life experiences. Reported benefits included feeling less isolated, being inspired by other people's stories and connecting as a group. All 9 participants said they would recommend the narrative session to anyone impacted by HD.

Conclusions: The narrative group session was considered an interesting and useful approach to facilitating adaptation following a negative predictive test result for HD.

Original languageEnglish
Pages (from-to)175-183
Number of pages9
JournalJournal of Huntington's disease
Volume7
Issue number2
DOIs
Publication statusPublished - 1 Jun 2018

Keywords

  • Huntington's disease
  • narrative
  • predictive testing
  • service evaluation

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