Southern Illinois University Carbondale, Carbondale, IL, USA.
J Intellect Disabil Res. 2011 Apr;55(4):361-9. doi: 10.1111/j.1365-2788.2010.01381.x. Epub 2011 Jan 17.
Parenting a child with a developmental disability can be a positive experience. A salient part of this outcome is support at the time of diagnosis and in an ongoing manner from immediate and extended family members. Studies are sparse on this topic for parents with a child with a rare trisomy condition.
The present study examined the support needs of parents with a child or adult with a rare trisomy condition (n = 20). Participants were recruited from the Tracking Rare Incidence Syndromes (TRIS) project. The TRIS Family, Friends and Finances Protocol was the data collection instrument. The protocol included primarily open-ended items. Qualitative analyses were conducted to identify themes from the protocol and follow-up phone contacts.
Support from immediate and extended family members varied from very positive to participants-describing very negative interactions with specific individuals. Many in the sample reported affirming experiences with spouses and difficulties with grandparents and other extended family members.
Results both confirmed the literature and reflected the unique circumstances of the participants. It is critical to raise awareness of the similar and disparate support needs of this unique population, as the affected children are living longer and their families require continuing support to meet their and their children's needs.
养育发育障碍儿童可能是一段积极的经历。其结果的一个显著部分是在诊断时以及通过直系和旁系亲属以持续的方式提供支持。对于有罕见三体综合征儿童的父母，关于这一主题的研究很少。
本研究调查了 20 名有儿童或成人患有罕见三体综合征的父母的支持需求。参与者是从追踪罕见疾病综合征（TRIS）项目中招募的。TRIS 家庭、朋友和财务协议是数据收集工具。该协议主要包括开放性项目。通过定性分析，从协议和后续电话联系中确定主题。
直系和旁系亲属的支持从非常积极到参与者描述的非常消极的互动，因人而异。样本中的许多人报告了与配偶的肯定经历，但与祖父母和其他旁系亲属存在困难。
研究结果既证实了文献，又反映了参与者的独特情况。提高对这一独特群体相似和不同支持需求的认识至关重要，因为受影响的儿童寿命更长，他们的家庭需要持续的支持来满足他们和他们孩子的需求。
