Caregivers' concerns and supports needed to care for adults with Down syndrome.
Caregivers' concerns and supports needed to care for adults with Down syndrome.
复制标题
护理成人唐氏综合症患者需要护理人员的关注和支持。
DOI：
10.1002/ajmg.c.32041
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发表时间：
2024
期刊：
影响因子：
--
通讯作者：
Rubenstein,Eric
中科院分区：
文献类型：
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作者：
DeLaGarza,Erica;Scott,Ashley;Hillerstrom,Hampus;Hendrix,James;Rubenstein,Eric
关于唐氏综合征患者的照顾者的研究主要集中在儿科人群的结果，而不是照顾者本身的经验。我们的目标是通过对唐氏综合征成人照顾者的调查，了解照顾者报告的经验和对自己和他们照顾的个人的担忧。我们对N = 438名唐氏综合征成年人的照顾者进行了调查，并询问了受访者对护理和人口统计学的看法。照顾者最常见的问题是规划未来的需求（72.1%）和当他们（照顾者）离开时会发生什么（68.3%）。他们关心的个人是就业（63.2%）和友谊/关系（63.2%）。我们没有发现基于照顾者教育水平的反应有显着差异。我们的调查确定了六个主题的反馈，关于临床和研究专业人员应该知道什么，以更好地为唐氏综合征患者，他们的家人和那些支持他们的人提供服务。许多护理人员讨论的主题包括医疗保健，协调，能力和能力。需要更多的努力来研究唐氏综合症成年人的护理经验。
Research regarding caregivers for individuals with Down syndrome mainly focuses on outcomes for the pediatric population and not on the experience of caregivers themselves. Our objective was to understand caregiver‐reported experiences and concerns for themselves and the individual they care for through a survey of caregivers of adults with Down syndrome. We conducted a survey ofN= 438 caregivers of adults with Down syndrome and asked about the perspectives of the respondents surrounding caregiving and demographics. The most common concerns among caregivers were planning for future needs (72.1%) and what happens when they (the caregiver) are gone (68.3%). Concerns they had for the individual they cared for were employment (63.2%) and friendships/relationships (63.2%). We found no significant difference in responses based on caregiver education level. Our survey identified six themes for the feedback about what clinical and research professionals should know to better serve individuals with Down syndrome, their families, and those who support them. Many caregivers discussed topics including healthcare, coordination, competence, and ability. More efforts for research into the caregiver experience for adults with Down syndrome are needed.