Affiliations: [a] Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands
| [b] Deptartment of Health, Medical, and Neuropsychology, Faculty of Social and Behavioural Sciences, Leiden University, Leiden, The Netherlands
| [c] Department of Biomedical Data Sciences, Leiden University Medical Centre, Leiden, The Netherlands
Correspondence:
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Correspondence to: Dr. Lucienne van der Meer, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, The Netherlands. E-mail: [email protected].
Abstract: Background:A positive predictive genetic test for Huntington’s disease (HD) can be a life-changing event for both carriers and their partners, leading to lower wellbeing and increasing the risk for separation and divorce. The ‘Hold me Tight’ program (HmT), based on emotionally focused couples’ therapy, aims at strengthening the couple bond by targeting attachment needs. Objective:This study investigates whether the HmT program helps couples strengthen their relationship, as an investment in a future where the disease will affect life in many ways. Methods:In a multiple baseline design using three baselines of varying length, 15 couples of presymptomatic HD-carriers and their partners were included. In three consecutive groups, couples underwent the intervention (an adapted version of the 8-session HmT program) in four weekly sessions and completed self-report questionnaires throughout the study period of 19 weeks (17 measurements). Attachment style was assessed at baseline, resilience at baseline and at the end of the follow-up, while relationship satisfaction and wellbeing were measured weekly. A multi-level model was applied to the data. Results:Over the course of the study, wellbeing and relationship satisfaction significantly improved; resilience, however, did not. Furthermore, all three outcome measures were moderated by attachment style, with more securely attached individuals showing better outcomes. Conclusion:HmT improved wellbeing and relationship satisfaction of couples facing HD. Due to these improvements and high patient acceptability rates, this program could become a standardized procedure in HD care. The program could be adapted for other populations, e.g., couples facing other genetic neurological disorders.
Keywords: Huntington’s disease, hold me tight, resilience, psychological, couples
