Foster Rebecca H, Kozachek Stephanie, Stern Marilyn, Elsea Sarah H
Department of Psychology, Virginia Commonwealth University, Richmond, VA, USA.
J Genet Couns. 2010 Apr;19(2):187-98. doi: 10.1007/s10897-009-9273-5. Epub 2010 Feb 12.
Smith-Magenis syndrome (SMS) is a complex disorder characterized by numerous challenges, including intellectual disability, speech delay, decreased pain sensitivity, sleep disturbances, hyperactivity, mood instability, and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands, caregivers may encounter difficulties maintaining their own level of well-being. Thus, a total of 112 primary caregivers (i.e., parents) of individuals diagnosed with SMS responded to online questionnaires to assess demographic and psychosocial factors, such as perceptions of child health vulnerability, benefit finding, sleep behaviors, anxiety and depression symptomatology, and caregiver satisfaction and self-efficacy, which may be related to caregiver well-being. Results show that, among mothers, caregiver well-being was directly related to perceived child health vulnerability, caregiver satisfaction, and benefit finding, and a significant moderating effect was observed for depression/anxiety counseling after beginning the caregiver role on the relationship between anxiety symptomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels of anxiety but do not seek counseling fair the worst in terms of well-being. Among fathers, lower depression symptoms and greater benefit finding were related to higher levels of caregiver well-being. These data show that many factors play roles in influencing coping and well-being among SMS caregivers. Investigating these variables and relationships may reveal additional resources and interventions to assist primary caregivers.
史密斯-马吉尼斯综合征（SMS）是一种复杂的疾病，其特征包括诸多挑战，如智力残疾、语言发育迟缓、疼痛敏感性降低、睡眠障碍、多动、情绪不稳定和自我伤害行为。照顾者必须随时适应孩子不断变化的需求。由于这些需求，照顾者在维持自身幸福水平方面可能会遇到困难。因此，共有112名被诊断患有SMS的个体的主要照顾者（即父母）对在线问卷做出了回应，以评估人口统计学和心理社会因素，如对儿童健康易损性的认知、益处发现、睡眠行为、焦虑和抑郁症状，以及照顾者满意度和自我效能感，这些因素可能与照顾者的幸福状况有关。结果显示，在母亲中，照顾者的幸福状况与感知到的儿童健康易损性、照顾者满意度和益处发现直接相关，并且在开始承担照顾者角色后，抑郁/焦虑咨询对焦虑症状与照顾者幸福状况之间的关系产生了显著的调节作用。结果还进一步表明，报告焦虑水平高但不寻求咨询的母亲照顾者在幸福方面情况最差。在父亲中，较低的抑郁症状和更高的益处发现与更高水平的照顾者幸福状况相关。这些数据表明，许多因素在影响SMS照顾者的应对能力和幸福状况方面发挥着作用。对这些变量及其关系进行调查可能会揭示出更多帮助主要照顾者的资源和干预措施。
