Santos Telmo, Steinway Caren, Mastrogiannis Ariana, Chen Jack, Woodward Jason, Riddle Ilka, Spicer Brittany, Berens John, Davis Thomas, Cornacchia Michelle, Wright Charmaine, Lindquist Lee A, Jan Sophia
Division of General Pediatrics, Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA.
Department of Pediatrics, Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York, USA.
J Appl Res Intellect Disabil. 2023 Nov;36(6):1229-1240. doi: 10.1111/jar.13141. Epub 2023 Aug 2.
Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers.
A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives.
Caregivers (n = 405) were predominantly parents, female, non-Hispanic, and in the 'learning to plan' stage of LTCP. Caregiver-identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001).
Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.
长期护理规划（LTCP）对于智力/发育障碍患者至关重要。本研究的目的是调查长期护理规划的进展情况，以及社会支持与以下两方面之间的关联：（1）长期护理规划；（2）家庭照顾者的负担。
对纽约州、俄亥俄州、宾夕法尼亚州和得克萨斯州智力/发育障碍患者的照顾者进行了一项横断面调查，探究人口统计学特征、支持情况、负担以及长期护理规划行为。采用双变量和线性多元回归分析来研究本研究的目标。
照顾者（n = 405）主要是父母，女性，非西班牙裔，且处于长期护理规划的“学习规划”阶段。照顾者确定的社会支持与长期护理规划的进一步进展相关（p = 0.020），且与照顾者较低的负担相关（p < 0.001）。
社会支持与长期护理规划更深入的进展相关，且与负担减轻相关，然而不到40%的照顾者报告获得了社会支持。有必要持续探索照顾者的情感/社会需求，以便更好地支持这些家庭。
