Objective: 

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. This study assessed relationships between parent-focused and child-focused stigma → illness intrusiveness → depressive and anxious symptoms. Exploratory analyses sought to identify patient characteristics associated with stigma.

Method: 

Caregivers (59 women and 43 men) of 63 children diagnosed with a DSD up to age 4 years completed measures of demographics, parent-focused and child-focused stigma, illness intrusiveness, and depressive and anxious symptoms.

Results: 

Increased parent-focused 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.

Conclusion: 

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.

中文翻译：

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性发育障碍/差异儿童的父母面临的耻辱、侵扰和困扰

客观的： 

由于孩子的性别发育障碍/差异（DSD）而导致家长报告的耻辱对家长心理社会调整的影响，人们知之甚少。在其他儿科人群中，感知到的医疗状况对日常活动的干扰（即疾病侵入性）调节了耻辱与适应的关系。这项研究评估了以父母为中心和以儿童为中心的耻辱→疾病侵入→抑郁和焦虑症状之间的关系。探索性分析旨在确定与耻辱相关的患者特征。

方法： 

63 名 4 岁以下被诊断患有 DSD 的儿童的看护者（59 名女性和 43 名男性）完成了人口统计、以父母为中心和以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。

结果： 

以父母和孩子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人组中父母的抑郁和焦虑症状的增加有关。在有 DSD 家族史的儿童中，父母报告说，他们对儿童的耻辱感更大。

结论： 

经历过与 DSD 相关的耻辱的父母报告说，孩子的 DSD 对他们的日常活动有更大的干扰，这与较差的心理社会适应有关。研究结果支持制定与父母对耻辱感和疾病侵入性的看法相关的临床干预措施，以改善父母的适应能力。