Putnam Michelle, Tang Fengyan
George Warren School of Social Work, Washington University, St. Louis, Campus Box 1196, One Brookings Drive, St. Louis, MO 63130, USA.
Home Health Care Serv Q. 2008;27(2):143-65. doi: 10.1080/01621420802022613.
Individuals with multiple sclerosis (MS) primarily rely on informal supports such as family members and assistive technology to meet their daily needs. As they age, formal supports may become important to compliment these supports and sustain community-based living. No previous research exists exploring plans and preparations of persons with MS for future independent living and long-term care needs. We analyzed data from a random sample survey (N = 580) to assess knowledge and perceptions of future service needs using ANOVA, chi-square, correlations, and MANOVA procedures. Results indicate that overall, most respondents are not well informed and have not planned or prepared for future care needs. Persons reporting severe MS were more likely to plan and prepare. Key "entry points" for making preparations include receiving specific education and planning information, discussions with family and professional service providers, and increased age, education, and income. We recommend greater infusion of long-term care planning into these existing entry points and creation of new entry points including healthcare provides and insurers.
患有多发性硬化症（MS）的个体主要依靠家庭成员等非正式支持以及辅助技术来满足其日常需求。随着他们年龄的增长，正式支持对于补充这些支持并维持基于社区的生活可能变得很重要。以前没有研究探索过MS患者针对未来独立生活和长期护理需求的计划与准备情况。我们分析了一项随机抽样调查（N = 580）的数据，使用方差分析、卡方检验、相关性分析和多变量方差分析程序来评估对未来服务需求的认知和看法。结果表明，总体而言，大多数受访者了解不足，尚未针对未来护理需求进行规划或准备。报告患有严重MS的人更有可能进行规划和准备。进行准备的关键“切入点”包括接受特定教育和规划信息、与家人及专业服务提供者进行讨论，以及年龄、教育程度和收入的增加。我们建议将更多的长期护理规划融入这些现有的切入点，并创建包括医疗保健提供者和保险公司在内的新切入点。
