A family systems approach to genetic counseling: Development of narrative interventions.

To what extent are family systems approaches relevant in the genomics era? What difference does it make to remember the wider social context within which 'problems' associated with a genetic diagnosis reside? How does this influence the conversations we have with our patients? These questions will be considered in relation to systemic approaches to genetic counseling practice. Narrative therapy with an emphasis on people's strengths, wishes, and ways of resisting the effects of a problem may be a particularly useful framework for genetic counselors. Narrative practice views people as multi-storied and is concerned with the question of how we encourage people to tell their stories in ways that make them feel stronger. Increased uptake of genomic testing and the number of people seeking genetic counseling present opportunities to consider new ways of working, particularly around support following a new genetic diagnosis. One option is to realize the potential of group interventions. Family therapy and narrative practices have the potential to encourage communication and for families to learn from each other.

Evaluating a genetic counseling narrative group session for people who have tested positive for the Huntington's disease expansion: An interpretative phenomenological analysis.

Huntington's disease (HD) is an inherited neurodegenerative disorder characterized by motor problems, cognitive impairment, and mood disturbances. Given the emotional elements of both HD itself and the testing process for it, psychological interventions may be helpful for those families impacted by HD. A stand-alone genetic counseling narrative group has been offered by one regional genetics clinic in the north of England to support people's coping following predictive genetic testing for HD. Groups are held 4-5 times per year with patients attending a group on a single occasion. This study assessed participants' experiences of attending a group using the qualitative method interpretative phenomenological analysis (IPA). Telephone interviews were conducted with 12 people who had a mutation-positive HD predictive test result and who had taken part in a genetic counseling narrative group session between November 2017 and February 2018. Participants were asked about their experiences of the group and any impact it had had on their lives. Four themes emerged: 'The power of the group, 'Active elements of the narrative exercise', 'Subsequent impact of the session', and 'Another voice'. Participants described the positive impact of being able to meet and empathize with others in a similar situation, the group's positive impact on their mood and future outlook, and its beneficial impact on disclosure. While most participants were positive about the session, the final theme presented the voices of two participants for whom the groups were poorly timed. Given the sessions' generally positive impact, we recommend other centers consider offering people impacted by HD similar sessions.

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

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.

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

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.