Academic Medical Center, University of Amsterdam, Psychosocial Department, Emma Children's Hospital, Amsterdam Public Health research institute, Post Box 22660, 1100 DD, Amsterdam, The Netherlands; Academic Medical Center, University of Amsterdam, Department of Paediatric Endocrinology, Emma Children's Hospital, Amsterdam Public Health research institute, Post Box 22660, 1100 DD, Amsterdam, The Netherlands.
Academic Medical Center, University of Amsterdam, Psychosocial Department, Emma Children's Hospital, Amsterdam Public Health research institute, Post Box 22660, 1100 DD, Amsterdam, The Netherlands.
Res Dev Disabil. 2017 Aug;67:19-27. doi: 10.1016/j.ridd.2017.05.005. Epub 2017 Jun 12.
To provide targeted support to parents of children with DS, knowledge of their distress and everyday problems is crucial. For this purpose, psychosocial screening instruments can be a valuable addition to routine clinical practice.
To determine differences on a psychosocial screener concerning distress and everyday problems in parents of young adolescents (YAs) with DS versus control parents and in mothers of YAs with DS versus fathers.
We compared outcomes of the Distress Thermometer for Parents in 76 mothers and 44 fathers of 11-13-year-olds with DS versus 64 mothers and 52 fathers of age-matched children without DS (comparing mothers and fathers separately). Additionally, we compared mothers and fathers within 34 parent couples of YAs with DS.
Clinical distress was not more frequent than in control parents. Mothers further did not report more everyday problems and only differed from their controls on one problem domain and some problem items. Fathers, however, reported more problems than their controls across most domains and wished to talk to a professional about their situation more frequently. Outcomes in mothers and fathers within parent couples did not differ significantly.
This is one of few studies to report on the use of psychosocial screening instruments in parents of children with DS. Our results suggested that attention for fathers of YAs with DS is required. Psychosocial screening instruments that inquire about specific problems and the wish for referral can play an important role in achieving this.
为了向唐氏综合征患儿的家长提供有针对性的支持，了解他们的痛苦和日常问题至关重要。为此，心理社会筛查工具可以成为常规临床实践的有益补充。
确定心理社会筛查器在唐氏综合征青少年（YA）患儿的父母与对照组父母之间，以及在唐氏综合征青少年患儿的母亲与父亲之间在痛苦和日常问题方面的差异。
我们比较了 76 名唐氏综合征 11-13 岁青少年母亲和 44 名父亲与 64 名唐氏综合征无 DS 年龄匹配儿童的母亲和 52 名父亲的结果（分别比较母亲和父亲）。此外，我们比较了 34 对唐氏综合征青少年患儿的母亲和父亲。
临床痛苦并不比对照组更频繁。母亲进一步报告的日常问题也不多，只是在一个问题领域和一些问题项目上与对照组有所不同。然而，与对照组相比，父亲在大多数领域报告了更多的问题，并且更希望就他们的情况与专业人士交谈。父母双方在 YA 中，母亲和父亲的结果没有显著差异。
这是为数不多的报告唐氏综合征患儿家长使用心理社会筛查工具的研究之一。我们的结果表明，需要关注唐氏综合征青少年患儿的父亲。询问特定问题和希望转介的心理社会筛查工具可以在实现这一目标方面发挥重要作用。
