Yanes Tatiane, Humphreys Linda, McInerney-Leo Aideen, Biesecker Barbara
School of Medicine, Griffith University, Gold Coast, Australia.
School Psychiatry, Faculty of Medicine, University of New South Wales, Sydney, Australia.
J Genet Couns. 2017 Aug;26(4):829-840. doi: 10.1007/s10897-016-0060-9. Epub 2016 Dec 30.
Little is known about the adaptive process and experiences of parents raising a child with an undiagnosed medical condition. The present study aims to assess how uncertainty, hope, social support, and coping efficacy contributes to adaptation among parents of children with an undiagnosed medical condition. Sixty-two parents of child affected by an undiagnosed medical condition for at least two years completed an electronically self-administered survey. Descriptive analysis suggested parents in this population had significantly lower adaptation scores when compared to other parents of children with undiagnosed medical conditions, and parents of children with a diagnosed intellectual and/or physical disability. Similarly, parents in this population had significantly lower hope, perceived social support and coping efficacy when compared to parents of children with a diagnosed medical condition. Multiple linear regression was used to identify relationships between independent variables and domains of adaptation. Positive stress response was negatively associated with emotional support (B = -0.045, p ≤ 0.05), and positively associated with coping efficacy (B = 0.009, p ≤ 0.05). Adaptive self-esteem was negatively associated with uncertainty towards one's social support (B = -0.248, p ≤ 0.05), and positively associated with coping efficacy (B = 0.007, p ≤ 0.05). Adaptive social integration was negatively associated with uncertainty towards one's social support (B-0.273, p ≤ 0.05), and positively associated with uncertainty towards child's health (B = 0.323, p ≤ 0.001), and affectionate support (B = 0.110, p ≤ 0.001). Finally, adaptive spiritual wellbeing was negatively associated with uncertainty towards one's family (B = -0.221, p ≤ 0.05). Findings from this study have highlighted the areas where parents believed additional support was required, and provided insight into factors that contribute to parental adaptation.
对于抚养患有未确诊疾病孩子的父母的适应过程和经历，我们知之甚少。本研究旨在评估不确定性、希望、社会支持和应对效能如何影响患有未确诊疾病孩子的父母的适应情况。62位孩子患有未确诊疾病至少两年的父母完成了一项电子自填式调查。描述性分析表明，与其他患有未确诊疾病孩子的父母以及患有已确诊智力和/或身体残疾孩子的父母相比，这一群体的父母适应得分显著更低。同样，与患有已确诊疾病孩子的父母相比，这一群体的父母希望、感知到的社会支持和应对效能也显著更低。多元线性回归用于确定自变量与适应领域之间的关系。积极的应激反应与情感支持呈负相关（B = -0.045，p≤0.05），与应对效能呈正相关（B = 0.009，p≤0.05）。适应性自尊与对自身社会支持的不确定性呈负相关（B = -0.248，p≤0.05），与应对效能呈正相关（B = 0.007，p≤0.05）。适应性社会融合与对自身社会支持的不确定性呈负相关（B = -0.273，p≤0.05），与对孩子健康的不确定性呈正相关（B = 0.323，p≤0.001），与深情支持呈正相关（B = 0.110，p≤0.001）。最后，适应性精神幸福感与对家庭的不确定性呈负相关（B = -0.221，p≤0.05）。本研究结果突出了父母认为需要额外支持的领域，并深入了解了有助于父母适应的因素。
