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This study focuses on psychological distress and coping strategies in partners of tested persons 5 years after predictive testing for Huntington's disease. A total of 16 carrier-couples and 17 noncarrier-couples participated in the study. Self-report questionnaires were used, assessing depression level, anxiety, intrusive and avoidance thoughts and coping strategies. Partners of carriers have as much distress as carriers, and for some distress variables even more (P&lt;0.05-0.001). They clearly experience more psychological distress than noncarriers' partners, as expected (P&lt;0.05-0.001). Regarding coping strategies, carriers' partners adopt more passive strategies (passive-regressive and avoiding reactions; P&lt;0.05) and less active strategies (social support seeking and problem solving; P&lt;0.05-0.001), compared to carriers. For both carriers and partners, the adoption of more passive strategies for coping was associated with more distress and the use of more active strategies with less distress (for carriers: P&lt;0.05-0.001; for carriers' partners: P&lt;0.05). The presence of children before predictive testing was an additional result-specific distress factor in carriers and their partners. In conclusion, carriers' partners have at least as much psychological distress as carriers, but partners have the tendency to draw back. The results suggest that the grief of carriers' partners may be 'disenfranchised', or not socially recognised, as if they have no right to mourn. We moreover interpreted the results referring to concepts such as anticipatory grief, psychological defences, dissonance processes and imbalanced partner relationship. Finally, we formulated some implications for genetic counselling.

Partners of mutation-carriers for Huntington's disease: forgotten persons?