Exploring Parents' Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome.
Exploring Parents' Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome.
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作者：
鉴于有关脆性X综合征（FXS）个体未来规划的数据有限，并且该社区内的个体人口不断增长，本研究旨在探讨受FXS影响的个体的护理人员在考虑长期支持计划时遇到的问题和挑战。这涉及到确定FXS患者继续与家人住在一起的原因，以及照顾者对未来支持和生活安排的保留意见。我们进行了一项匿名在线调查，包括34个问题，评估资格，生活安排/支持和未来的担忧。我们发现，大多数FXS患者都患有中度智力和发育障碍（IDD）以及共同发生的行为状况，但总体健康状况良好。大多数患有FXS的人目前与家人住在一起，因为父母的愿望，他们自己的愿望，以及无法独立生活。对于三分之一的照顾者来说，未来生活安排的计划是继续与家庭成员长期居住。很大一部分照顾者没有考虑过其他安排或不确定。超过70%的FXS患者的照顾者关心个人未来的多个方面。年轻人的照顾者是最关心的，但也相信他们有时间之前，他们需要计划或目前无法评估未来的支持需求。
Given limited data regarding future planning specific to Fragile X Syndrome (FXS) individuals and the growing population of individuals within this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans. This involved identifying the reasons individuals with FXS continue to reside with family and the reservations caregivers have regarding future supports and living arrangements. We administered an anonymous online survey consisting of 34 questions assessing eligibility, living arrangements/supports, and future concerns. We found that most individuals with FXS were affected with moderate Intellectual and Developmental Disabilities (IDD) and co-occurring behavioral conditions but had overall good health. The majority of individuals with FXS currently resided with family due to parental desire, their own desire, and the inability to live independently. For one-third of caregivers, the plan for future living arrangements is to continue residing with family members long-term. A large proportion of caregivers had not considered alternative arrangements or were unsure. More than 70% of caregivers of individuals with FXS are concerned about multiple aspects of the individual’s future. Caregivers of younger individuals are the most concerned, but also believe they have time before they need to plan or are unable to currently assess the future need for support.
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DOI：
10.1352/1944-7558-116.1.16
发表时间：
2011-01-01
影响因子：
2.1
作者：
Hartley, Sigan L.;Seltzer, Marsha Mailick;Bailey, Donald B., Jr.
通讯作者：
Bailey, Donald B., Jr.
影响因子：
81.5
作者：
Hagerman, Randi J.;Berry-Kravis, Elizabeth;Hagerman, Paul J.
通讯作者：
Hagerman, Paul J.
影响因子：
8
作者：
Kidd, Sharon A.;Lachiewicz, Ave;Berry-Kravis, Elizabeth
通讯作者：
Berry-Kravis, Elizabeth
影响因子：
2.2
作者：
Ryan, Assumpta;Taggart, Laurence;Slevin, Eamonn
通讯作者：
Slevin, Eamonn
影响因子：
4.5
作者：
Maenner MJ;Smith LE;Hong J;Makuch R;Greenberg JS;Mailick MR
通讯作者：
Mailick MR