Communication and Huntington's disease: qualitative interviews and focus groups with persons with Huntington's disease, family members, and carers

Abstract

Background: As an effect of the cognitive, emotional and motor symptoms associated with Huntington's disease, communicative interaction is often dramatically changed. No study has previously included the subjective reports on this subject from individuals with Huntington's disease.

Aims: To explore the qualitative aspects of how communication is affected by Huntington's disease from a triangular perspective represented by individuals with Huntington's disease, family members and professional carers.

Methods & procedures: Eleven persons with Huntington's disease, seven family members and ten carers were interviewed in focus groups or individually, using a semi-structured interview guide. The interviews were transcribed verbatim and analysed using thematic content analysis, resulting in a number of free codes concerning communication. The codes describing related phenomena were merged into categories. Categories were analysed and reanalysed resulting in three major themes, common to the three groups of participants.

Outcomes & results: The themes found were: Communication has changed; Factors that influence communication negatively; and Factors that influence communication positively. Subcategories differed between the three groups. All participants seemed to acknowledge the variability and lack of initiative in communication. The persons without Huntington's disease focused on the changes in terms of speech, language comprehension, the lack of depth in conversation and the need to make adjustments, while the persons with Huntington's disease focused on the effort and concentration demanded to communicate. They described the change they perceived in their communicative ability in terms of loss. All participants thought that an emotional load had a negative impact on communication. Furthermore, individuals with Huntington's disease stressed that other people's speed of communication had a negative impact, while family members and carers stressed that things such as personality changes in persons with Huntington's disease and lack of eye contact with them influenced communication negatively. All participants acknowledged the need for increased participation in social life in order to enhance communication.

Conclusions & implications: In brief, persons with Huntington's disease expressed a need for a richer social life and more (adjusting) conversation partners, family members expressed a need for more support and professional carers wanted more information about Huntington's disease. The triangular perspective utilized in the present study completed the picture of the communicative consequences of Huntington's disease. In particular, it became clear, that the insights of persons with Huntington's disease can and has to be included in communicative assessments and plans for intervention.