Affiliations: [a] Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA
| [b] Department of Psychology and Human Development, Vanderbilt University, Nashville, TN, USA
Correspondence:
[*]
Correspondence to: Kelly H. Watson, Vanderbilt University Medical Center, 1161 21st Avenue South, A-0118 MCN, Nashville, TN 37232, USA. Tel.: +1 615 936 0060; E-mail: k.watson@vumc.org.
Abstract: Background:Families in which a parent has Huntington’s disease (HD) are faced with significant stressors that can contribute to difficulties in communicating together about illness-related concerns. Family members who use more disengagement coping strategies, including denial and avoidance, to deal with illness-related stressors may have the greatest challenges to effective communication. Objective:The current study examined the associations of intrapersonal and interpersonal disengagement coping responses with observed and reported emotions of adolescents and young adults (AYA) at genetic risk for HD. Methods:Families included 42 AYA (n = 26 females) ages 10 to 34 (M = 19 years, 11 months; SD = 7 years, 6 months) and their parent with HD (n = 22 females, M age = 46 years, 10 months; SD = 9 years, 2 months). Dyads participated in observations of communication and completed questionnaires about disengagement coping and internalizing symptoms. Results:Disengagement coping of AYA was unrelated to their observed and reported emotional difficulties (intrapersonal coping). However, there was evidence for the importance of interpersonal disengagement coping, as AYA’s negative affect was observed and reported to be highest when both AYA and their parents reported using high levels of avoidance, denial, and wishful thinking to cope with HD-related stress. Conclusion:The findings underscore the importance of a family-oriented approach to coping and communication in families affected by HD.
