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

Abstract

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.

Keywords: Huntington’s; Narrative; Predictive testing; Psychosocial adjustment.

Fig. 1

The Tree of Life in action. There are three photographs, each showing the room where the Tree of Life exercise took place. There are some chairs, arranged to create a semi-circle. A tree, with bare roots and branches, is painted on a large board, which leans against the wall. In the first photo, the facilitator is placing a post-it note onto the branches of the tree. The second photo shows the other facilitator walking towards the tree in order to place a post-it note onto the trunk. The third photo shows the tree at the end of the session, when it has been covered in post-it notes which represent the contributions of the group as they reflect on their background, daily lives, skills, hopes, important figures and contributions that others have made

Fig. 2

A process map of data collection and qualitative analyses. The process map illustrates the route of the qualitative analysis. Central to the diagram is the narrative session and analysis of the evaluation forms. Transcribed responses were analysed alongside the interview transcripts. The diagram shows how the interview and observation data were considered in parallel, with development of themes from the observations helping to inform the final thematic framework