Center for Pediatric Psychology, Psychology Department, Oklahoma State University, Stillwater, OK.
Department of Urology, Texas Children's Hospital, Houston, TX.
J Dev Behav Pediatr. 2022 Sep 1;43(7):e473-e482. doi: 10.1097/DBP.0000000000001077. Epub 2022 Mar 30.
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.
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.
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.
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.
父母因子女的障碍/性别发育差异（DSD）而报告的耻辱感对父母的心理社会适应的影响尚未得到充分理解。在其他儿科人群中，父母认为医疗状况对日常活动的干扰（即疾病侵入性）调解了耻辱感与适应之间的关系。本研究评估了父母为中心和以孩子为中心的耻辱感与疾病侵入性与抑郁和焦虑症状之间的关系。探索性分析旨在确定与耻辱感相关的患者特征。
63 名患有 DSD 的儿童（年龄在 4 岁以下）的照顾者（59 名女性和 43 名男性）完成了人口统计学、父母为中心和以孩子为中心的耻辱感、疾病侵入性以及抑郁和焦虑症状的测量。
父母为中心和以孩子为中心的耻辱感增加与疾病侵入性增加相关，而疾病侵入性又与亲子关系中父母的抑郁和焦虑症状增加相关。在有 DSD 家族史的儿童中，父母报告的以孩子为中心的耻辱感更大。
经历 DSD 相关耻辱感的父母报告称，他们的孩子的 DSD 对他们的日常生活的干扰更大，这与较差的心理社会适应相关。研究结果支持开发与父母对耻辱感和疾病侵入性的认知相关的临床干预措施，以改善父母的适应能力。
