Department of Psychiatry, Leiden University Medical Center, Leiden, The Netherlands
Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
Collaborative Antwerp Psychiatric Research Institute (CAPRI), Faculty of Medicine, University of Antwerp, Antwerp, Belgium
Center for Mental Health Care Delfland, Delft, The Netherlands
Correspondence to: Anna A.M. Hubers, Leiden University Medical Center, Department of Psychiatry, PO Box 9600, 2300 RC Leiden, The Netherlands. Tel.: +31 6 42694931; Fax: +31 71 5248156; E-mail: [email protected].
Abstract: Background: Huntington’s disease (HD) mutation carriers are at increased risk of suicidal ideation, suicide attempts, and completed suicide. However, research is lacking on coping strategies and treatment options that can be offered to suicidal HD mutation carriers. Objective: This study explores how individuals with pre-motor or motor symptomatic HD cope with suicidality, how their partners support them, and their ideas and wishes regarding how relatives and healthcare professionals can help them in coping with suicidality. Methods: This qualitative study included 11 HD mutation carriers who experienced suicidal ideation or attempted suicide and 3 of their partners. They participated in a focus group discussion or an individual in-depth interview. Two independent researchers fragmented the transcribed interviews, coded these fragments, grouped them under themes, and structured the data. Results: HD study participants used four main strategies to cope with suicidality, including talking about suicidality, employing self-management activities, using medication, and discussing end-of-life wishes. Partners, relatives, and healthcare professionals can support suicidal HD mutation carriers in each of those four strategies. Conclusions: Despite the absence of a turnkey solution for suicidality in HD, healthcare professionals can play an important role in supporting suicidal HD mutation carriers by providing an opportunity to talk about suicidality, providing psychoeducation on self-management, prescribing medication, and discussing end-of-life wishes. Future HD-specific intervention studies could investigate the effect of combining these treatment strategies into one holistic approach.
Keywords: Neurodegenerative diseases, suicide, psychopathology, coping behaviour, therapy, qualitative research