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.

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

“…Since 2015 as part of a service improvement, we have been offering Genetic Counseling narrative groups as a stand‐alone session to small groups of patients (MacLeod et al., 2018; Spiers et al., 2020; Stopford et al., 2020).…”

“…These group sessions were initially offered to patients with a family history of Huntington's disease and subsequently evaluated with other groups of patients including groups for familial cancer, cardiac, and eye genetic conditions (MacLeod et al., 2018; Spiers et al., 2020; Stopford et al., 2020). The aim of these groups is to help support resilience and participants’ own preferred ways of coping.…”

Psychological Interventions for People with Huntington’s Disease: A Call to Arms

“…With regards to this, the adoption of family therapy models (e.g., focused on attachment styles [102,103]) for children and younger individuals affected by HD may be helpful, in particular due to recent evidence showing that the clinical presentation of juvenile HD may be more heterogeneous than previously thought [104]. In addition, as one of the qualitative studies identified by the present review showed preliminary positive results for a group genetic counselling session based on narrative therapy [62], similar forms of support may be explored and adapted for individuals at risk of HD not wishing to undergo genetic testing, Finally, more consideration should be given to investigating how psychological approaches may be adopted across the entire clinical trajectory of HD, from the premanifest phase to stage 5 [105]. Indeed, as severe cognitive deterioration tends to characterise HD's intermediate to advanced stages (e.g., [3][4][5], especially in the domains of language and executive functioning, the opportunity for effective psychological interventions may appear to be relatively limited to prodromal and early stages (e.g., 1-2).…”

Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review

“…Still, no papers examined whether the number of pre- and post-test counseling sessions made a difference to outcomes. One UK series of studies trialed a new practice of support post-testing, with a novel standalone genetic counseling narrative group approach for individuals with a negative HD predictive test result [ 64 ] and a positive HD predictive test result [ 65 , 66 ], as well as their partners [ 66 ]. The majority of participants were positive about the group session being a safe way to share experiences in a structured way [ 66 ], discuss difficult emotions, highlight coping resources, and feeling a sense of community [ 64 , 65 ].…”

“…One UK series of studies trialed a new practice of support post-testing, with a novel standalone genetic counseling narrative group approach for individuals with a negative HD predictive test result [ 64 ] and a positive HD predictive test result [ 65 , 66 ], as well as their partners [ 66 ]. The majority of participants were positive about the group session being a safe way to share experiences in a structured way [ 66 ], discuss difficult emotions, highlight coping resources, and feeling a sense of community [ 64 , 65 ]. Barriers to accessing genetic counseling and testing Ten studies described travel distance and time as barriers to accessing genetic counseling or testing [ 33 , 42 , 43 , 47 , 59 , 62 , 67 – 70 ] or adequate support throughout the process [ 47 ].…”