Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, Leopoldina Hospital, 97422 Schweinfurt, Germany.
Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University of Würzburg, 97080 Würzburg, Germany.
Int J Environ Res Public Health. 2021 Mar 8;18(5):2707. doi: 10.3390/ijerph18052707.
At present, there is a lack of longitudinal studies on the psychological adjustment of both children and adolescents with 22q11.2 deletion syndrome (22q11.2DS) and their primary caregivers. To fill this gap, we performed a four-year follow-up study. Mothers filled out the Child Behavior Checklist 4-18, the Social Orientation of Parents with Handicapped Children questionnaire to assess maternal stress and coping strategies, and the Freiburger Personality Inventory-Revised-subscales strain and life satisfaction. Fifty-five subjects with 22q11.2DS (26 males and 29 females; age: M = 10.79 years, SD = 3.56 years) and their biological mothers (age: M = 40.84 years, SD = 4.68 years) were included in this study. Significantly higher levels of behavior problems than in the general population and an increase in these problems, especially internalizing ones, over time could be found. In contrast, maternal stress did not change significantly over time, but mothers demonstrated increased levels of strain and reduced life satisfaction at T2. Thus, careful monitoring as well as early and adequate interventions, if indicated, should be offered to families with a child with 22q11.2DS, not only for somatic complaints but also for problems with psychological adjustment.
目前，针对 22q11.2 缺失综合征（22q11.2DS）患儿及其主要照顾者的心理调整，缺乏纵向研究。为了填补这一空白，我们进行了为期四年的随访研究。母亲们填写了儿童行为检查表 4-18、残疾儿童父母社会定向问卷，以评估母亲的压力和应对策略，以及弗莱堡人格问卷修订版-应变和生活满意度子量表。本研究纳入了 55 名 22q11.2DS 患儿（26 名男性，29 名女性；年龄：M=10.79 岁，SD=3.56 岁）及其亲生母亲（年龄：M=40.84 岁，SD=4.68 岁）。与一般人群相比，这些患儿的行为问题明显更高，而且随着时间的推移，这些问题，特别是内化问题，呈上升趋势。相比之下，母亲的压力在时间上没有明显变化，但在 T2 时，母亲表现出更高的应变水平和更低的生活满意度。因此，如果需要，应向 22q11.2DS 患儿家庭提供仔细的监测以及早期和充分的干预措施，不仅针对躯体症状，还针对心理调整问题。
