Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?
Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?
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DOI：
10.1007/s10897-017-0193-5
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发表时间：
2018-08-01
影响因子：
1.9
通讯作者：
Shashi, Vandana
中科院分区：
文献类型：
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作者：
McConkie-Rosell, Allyn;Hooper, Stephen R.;Shashi, Vandana
对于孩子患有未确诊慢性病的父母的心理社会状况，人们知之甚少。美国国立卫生研究院未确诊疾病网络 (UDN) 对具有疑难医疗发现的个人进行评估，目的是发现潜在的诊断。我们报告了 50 位父母的社会心理概况，他们的孩子被该网络的一个临床中心录取。在孩子的 UDN 临床评估开始时，家长填写了评估焦虑、抑郁、应对自我效能和医疗保健授权的问卷。未确诊儿童的父母焦虑和抑郁的比例很高（40%），这与应对自我效能显着负相关，但与医疗保健赋权无关。孩子年龄较大且病程较长的父母应对自我效能、抑郁和焦虑症状的能力更好。发现了性别差异，母亲报告的医疗保健参与度高于父亲。总体而言，我们的研究结果表明，患有未确诊疾病的儿童的父母保持积极的应对自我效能，并继续积极参与医疗保健，对不确定性的容忍度较低，但这些会给父母带来高昂的情感成本。由于父母的心理需要可能并不明显，因此应确定这些需要并提供必要的支持。
Little is known about the psychosocial profiles of parents who have a child with an undiagnosed chronic illness. The National Institutes of Health Undiagnosed Diseases Network (UDN) evaluates individuals with intractable medical findings, with the objective of discovering the underlying diagnosis. We report on the psychosocial profiles of 50 parents whose children were accepted to one of the network's clinical sites. Parents completed questionnaires assessing anxiety, depression, coping self-efficacy, and health care empowerment at the beginning of their child's UDN clinical evaluation. Parents of undiagnosed children had high rates of anxiety and depression ( 40%), which were significantly inversely correlated with coping self-efficacy, but not with health care empowerment. Coping self-efficacy, depressive, and anxiety symptoms were better in parents with older children and with longer duration of illness. Gender differences were identified, with mothers reporting greater health care engagement than fathers. Overall, our findings suggest that parents of children with undiagnosed diseases maintain positive coping self-efficacy and remain actively engaged in health care and to a lesser degree tolerance for uncertainty, but these come with a high emotional cost to the parents. As the parents' psychological needs may not be obvious, these should be ascertained and the requisite support provided.