Division of General Pediatrics, Steven & Alexandra Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York.
Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
J Appl Res Intellect Disabil. 2019 Sep;32(5):1103-1115. doi: 10.1111/jar.12600. Epub 2019 Apr 22.
Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning.
The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators.
Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day-to-day care, medical management and transportation. Approaches to planning within each domain varied greatly.
The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.
研究表明，智障和发育障碍（IDD）成年人的寿命越来越长，而他们的照顾者往往难以规划未来，在长期护理规划方面缺乏支持和知识。
研究小组对智障成年人的父母和兄弟姐妹进行了访谈，并使用改良的扎根理论进行定性编码，以探讨未来规划的领域，并确定障碍和促进因素。
访谈的主题揭示了智障成年人照顾者应该考虑的未来规划的七个主要领域。这些领域包括住房、法律规划、主要照顾者的确定、财务规划、日常护理、医疗管理和交通。每个领域的规划方法差异很大。
研究小组确定了“确定主要照顾者”这一领域，这是照顾者为未来规划时最重要的一步，但也观察到确定的领域是相互关联的，应该一起考虑。
