Stigma, Intrusiveness, and Distress in Parents of Children with a Disorder/Difference of Sex Development.
Stigma, Intrusiveness, and Distress in Parents of Children with a Disorder/Difference of Sex Development.
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DOI：
10.1097/dbp.0000000000001077
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发表时间：
2022-09-01
影响因子：
2.4
通讯作者：
Wisniewski, Amy B.
中科院分区：
文献类型：
--
作者：
Traino, Katherine A.;Roberts, Caroline M.;Fisher, Rachel S.;Delozier, Alexandria M.;Austin, Paul F.;Baskin, Laurence S.;Chan, Yee-Ming;Cheng, Earl Y.;Diamond, David A.;Fried, Allyson J.;Kropp, Bradley;Lakshmanan, Yegappan;Meyer, Sabrina Z.;Meyer, Theresa;Buchanan, Cindy;Palmer, Blake W.;Paradis, Alethea;Reyes, Kristy J.;Tishelman, Amy;Williot, Pierre;Wolfe-Christensen, Cortney;Yerkes, Elizabeth B.;Mullins, Larry L.;Wisniewski, Amy B.
关键词：
父母因孩子的性发育障碍/差异（DSD）而报告的耻辱感对父母心理社会适应的影响尚不清楚。在其他儿科人群中，医疗条件对日常活动的感知干扰（即疾病侵入性）介导了耻辱与适应的关系。本研究评估了以父母和儿童为中心的病耻感→疾病侵入性→抑郁和焦虑症状之间的关系。探索性分析试图确定与病耻感相关的患者特征。63名4岁以下被诊断为DSD的儿童的护理人员（59名女性，43名男性）完成了人口统计学、以父母和儿童为中心的耻辱感、疾病侵入性以及抑郁和焦虑症状的测量。以父母和儿童为中心的耻辱感的增加与疾病侵入性的增加有关，而疾病侵入性的增加又与二联体中父母抑郁和焦虑症状的增加有关。在有DSD家族史的儿童中，父母报告了更多以儿童为中心的耻辱感。经历过与DSD相关的耻辱的父母报告说，他们孩子的DSD对他们日常活动的干扰更大，这与较差的心理社会适应有关。研究结果支持开发与父母对耻辱和疾病侵入性的看法相关的临床干预措施，以改善父母的适应。
The impact of parent-reported stigma due to their child’s disorder/difference of sex development (DSD) on parent psychosocial adjustment is poorly understood. In other pediatric populations, perceived interference of medical conditions into daily activities (i.e., illness intrusiveness) mediates the relationship of stigma to adjustment. The present study assessed relationships between parent- & child-focused stigma→illness intrusiveness→depressive & anxious symptoms. Exploratory analyses sought to identify patient characteristics associated with stigma. Caregivers (59 women, 43 men) of 63 children diagnosed with DSD up to age four completed measures of demographics, parent- and child-focused stigma, illness intrusiveness, and depressive and anxious symptoms. Increased parent- and child-focused stigma were associated with increased illness intrusiveness, which in turn, was associated with increased depressive and anxious symptoms for parents nested within dyads. Among children with DSD family histories, parents reported greater child-focused stigma. Parents who experience DSD-related stigma report greater interference of their child’s DSD into their daily activities, which is associated with poorer psychosocial adjustment. Findings support developing clinical interventions related to parents’ perceptions of stigma and illness intrusiveness to improve parent adjustment.