Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA.
Department of Psychology and Human Development, Vanderbilt University, Nashville, TN, USA.
J Huntingtons Dis. 2023;12(3):305-312. doi: 10.3233/JHD-230566.
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.
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.
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.
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.
The findings underscore the importance of a family-oriented approach to coping and communication in families affected by HD.
亨廷顿病(HD)患者的家庭面临着重大压力,这可能导致他们在交流与疾病相关的问题时存在困难。那些使用更多回避应对策略(如否认和回避)来应对与疾病相关的压力源的家庭成员,在有效沟通方面可能面临最大的挑战。
本研究考察了个体内和人际回避应对反应与 HD 遗传风险青少年和年轻人(AYA)观察到和报告的情绪之间的关联。
研究纳入了 42 名 AYA(n=26 名女性),年龄为 10 至 34 岁(M=19 岁,11 个月;SD=7 岁,6 个月),以及他们患有 HD 的父母(n=22 名女性,M 年龄=46 岁,10 个月;SD=9 岁,2 个月)。亲子二人组参与了沟通观察,并完成了回避应对和内化症状的问卷。
AYA 的回避应对与他们观察到的和报告的情绪困难(个体内回避应对)无关。然而,人际回避应对的重要性得到了证实,因为当 AYA 和他们的父母都报告使用高水平的回避、否认和一厢情愿的想法来应对与 HD 相关的压力时,AYA 的负性情绪被观察到并报告为最高。
研究结果强调了在受 HD 影响的家庭中,采用以家庭为导向的应对和沟通方法的重要性。