Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD
Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD
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DOI：
10.1093/jpepsy/jsaa069
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发表时间：
2020-10-01
影响因子：
3.6
通讯作者：
Mullins, Larry L.
中科院分区：
文献类型：
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作者：
Roberts, Caroline M.;Sharkey, Christina M.;Mullins, Larry L.
目的探讨性别发育障碍（DSD）患儿的焦虑和抑郁症状。研究表明，他们的孩子的DSD的不确定性与父母的心理社会困扰;然而，以前的研究已经横截面或相关性的性质。目前的研究是第一个研究儿童生殖器手术后前12个月内，或如果未进行手术，则在研究进入后的前12个月内，儿童对孩子的DSD和照顾者焦虑和抑郁症状的不确定性之间关系的纵向轨迹。方法从美国12个DSD专科诊所招募了113名DSD儿童（N=70; M-年龄= 9.81个月; 65.7%为女性）的照顾者（M-年龄= 32.12; 57.5%为母亲; 72.6%为白人）。照顾者在基线、生殖器成形术后6个月和12个月完成心理社会测量，或者如果父母选择不为他们的孩子进行手术，则进入研究。结果护理人员的疾病不确定感、焦虑和抑郁症状在基线时最高，随着时间的推移而下降（ps < .05）。看护者疾病不确定性预测了所有时间点的焦虑和抑郁症状（ps < .05）。结论照顾者对孩子的DSD的不确定性的看法在诊断后不久是最高的，并且随着时间的推移，不确定性继续预测焦虑和抑郁症状。因此，最初的诊断期是心理评估和干预的关键时期，父母疾病的不确定性是一个重要的临床目标。
Objective A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry. Methods One hundred and thirteen caregivers (M-age = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N=70; M-age = 9.81months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child. Results Caregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05). Conclusions Caregivers' perceptions of uncertainty about their child's DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target.