A Self-Management Program for Improving the Well-Being of Veterans with AIS D Incomplete Spinal Cord Injury

改善 AIS D 不完全脊髓损伤退伍军人福祉的自我管理计划

• 批准号: 10703804
• 负责人: Scott D. McDonald
• 金额: --
• 依托单位: VA VETERANS ADMINISTRATION HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-01 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10703804
• 关键词: Acute; Adult; Attention; Authorization documentation; Behavioral Model; Caring; Catheters; Chronic Care; Chronic Disease; Client satisfaction; Clinical; Communities; Community Integration; Development; Disabled Persons; Disparity; Educational Intervention; Employment; Event; Feedback; Feeling suicidal; Focus Groups; Fostering; Future; General Population; Health; Healthcare; Home; Hygiene; Impairment; Incontinence; Individual; Injury; Intervention; Interview; Knowledge; Learning; Life; Manuals; Measures; Mediator; Medical; Mental Depression; Nervous System Trauma; Outcome; Pain; Paralysed; Participant; Patients; Personal Satisfaction; Physical Function; Pilot Projects; Prevalence; Problem Solving; Prognosis; Provider; Psychological adjustment; Quality of life; Randomized, Controlled Trials; Rehabilitation therapy; Research; Research Personnel; Resources; Review Literature; Risk; Self Management; Sensory; Services; Severities; Social isolation; Social support; Spinal cord injury; Technology; United States Department of Veterans Affairs; United States National Institutes of Health; Veterans; Veterans Health Administration; acceptability and feasibility; authority; chronic pain; cohort; comorbidity; design; disability; experience; feasibility testing; handbook; high risk; improved; innovation; meetings; member; military veteran; novel; preference; pressure; programs; provider communication; psychosocial; randomized, clinical trials; recruit; rehabilitation service; satisfaction; self-management program; severe injury; skills; skills training; success; suicidal; telehealth; telehealth systems; therapy development; timeline; urinary; wound

Background and Significance: Spinal cord injury (SCI) is a life-altering event that often results in permanent paralysis and sensory loss, with subsequent loss of physical function and independence and risk for negative psychosocial outcomes. About 25-51% of adults with acquired SCI have AIS D SCI and have an excellent prognosis for ambulation, are less visibly disabled, and generally have better objective well-being, such as community integration and mobility. However, counterintuitively, military Veterans with AIS D SCI are at higher risk of poor subjective well-being (SWB) including higher rates of depression and suicidal ideation. Several factors that may explain the disparity in well-being have been proposed, including less acute rehabilitation services, limited development of instrumental and social support networks, greater prevalence of comorbid health issues, and underdeveloped disability identity. Given that SWB is central to quality of life, it is essential to understand and foster those skills, perspectives, and resources that best support SWB after SCI. Specific Aims: This study will develop the first intervention targeting the well-being of Veterans with AIS D SCI by attending to their specific needs using a self-management approach. Self-management (SM) programs are differentiated by fostering engagement, knowledge, and authority to direct care to the patient. An SM-oriented program that is tailored to the needs and treatment preferences of Veterans with AIS D SCI has great promise to improve well-being. For this reason, the proposed study will develop the SCI Self- Management for AIS D (SCISM-D) Program, an individually administered, personalized support and skills training intervention via the VA’s video telehealth-to-home technology, to improve well-being among Veterans with AIS D SCI. This study is highly significant for Veteran health care, as creation of the proposed SCISM-D program is expected to fill a critical health care gap and improve lifetime psychosocial functioning for Veterans with AIS D SCI. This study has three aims: (Aim 1) Develop SCISM-D to enhance the SWB of military Veterans with AIS D SCI using preliminary research and focus groups. (Aim 2) Conduct a pilot study to improve SCISM-D and test the feasibility and acceptability of SCISM-D to prepare for a future randomized controlled trial. (Aim 3) Finalize the SCISM-D program manual and consumer handbook. Research Plan: For Aim 1, two focus groups of 4-6 Veterans with AIS D SCI and two focus groups of 4-6 SCI providers will be recruited to review, rate, and discuss proposed components of SCISM-D during two meetings each. Informed by the focus group ratings and feedback, the SCISM-D program manual and consumer handbook will be developed. Individual program components will be adapted from extant SM manuals with others developed by the investigators. The completed program manual and consumer handbook will then be presented to the focus groups and expert panel for feedback, followed by a final round of revisions. Criteria for success include completion of the focus groups and materials according to the study timeline. Next, a pilot study will be conducted to examine the feasibility of SCISM-D and a subsequent randomized controlled trial (Aim 2). A target of 20 Veterans with AIS D SCI will complete the study. SCISM-D is anticipated to involve 5-7, 45-60-minute sessions conducted via the VA’s telehealth system. Several measures and interviews will be administered during the program to assess treatment gains and mediators. Criteria for success include the ability to recruit at least 2 participants per month, at least 75% retention, at least 75% patient satisfaction, and an average change of “minimally improved” in confidence and life satisfaction, among others. After the pilot study, the focus group members will be asked to review the draft SCISM-D program manual and consumer handbook to inform final revisions to content by the team of investigators and layout by professional designers (Aim 3).

背景和意义：脊髓损伤（SCI）是一个改变生活的事件，通常导致永久性 瘫痪和感觉丧失，随后丧失身体机能和独立性以及负面风险 社会心理结果。大约25-51％的成年人患有SCI的成年人具有AIS D SCI，并且具有出色的 预后的行动，较少的残障人士，通常具有更好的客观福祉，例如 社区整合和流动性。但是，违反直觉的是，具有AIS D SCI的退伍军人处于更高 主观幸福感（SWB）的风险包括抑郁症和自杀想法的率更高。一些 可能已经提出了可能解释福祉差异的因素，包括较少的急性康复 服务，工具和社会支持网络的开发有限，合并症的更高率 健康问题，以及欠发达的残疾身份。鉴于SWB是生活质量的核心，这是必不可少的 了解和培养这些技能，观点和资源，这些技能，资源最能支持SCI之后的SWB。 具体目的：这项研究将开发针对退伍军人福祉的第一个干预措施 AIS D SCI通过使用自我管理方法来满足他们的特定需求。自我管理 （SM）通过促进参与，知识和权力将护理直接护理的权力来区分 病人。根据AIS的退伍军人的需求和治疗偏好量身定制的一个面向SM的程序 D SCI具有改善福祉的巨大希望。因此，拟议的研究将发展SCI自我 AIS D（SCISM-D）计划的管理，一个单独管理的个性化支持和技能 通过VA的视频远程医疗对家庭技术进行培训干预，以改善退伍军人的福祉 与AIS D Sci。这项研究对于资深医疗保健非常重要，作为提案的创建 预计SCISM-D计划将填补关键的医疗保健差距并改善终身社会心理 对具有AIS D SCI的退伍军人的功能。这项研究具有三个目的：（目标1）开发SCISM-D以增强 使用初步研究和焦点小组，拥有AIS D SCI的退伍军人的SWB。 （AIM 2）进行 试点研究以改善SCISM-D并测试SCISM-D的可行性和可接受性，为未来做准备 随机对照试验。 （AIM 3）最终确定SCISM-D程序手册和消费者手册。 研究计划：对于目标1，两个焦点小组组成的4-6名退伍军人和AIS D SCI和两个4-6 SCI的焦点小组 提供者将被招募以审查，评分和讨论在两次会议上提议的SCISM-D的组件 每个。由焦点小组评级和反馈告知，SCISM-D计划手册和消费者 手册将开发。单个程序组件将根据额外的SM手册进行调整 其他由调查人员开发的。完整的程序手册和消费者手册将是 向焦点小组和专家小组提供反馈，然后进行最后一轮修订。标准 成功包括根据研究时间表完成焦点小组和材料。 接下来，将进行一项试点研究，以检查SCISM-D的可行性和随后的随机性 对照试验（AIM 2）。具有AIS D SCI的20名退伍军人的目标将完成这项研究。预计SCISM-D 涉及通过VA的远程医疗系统进行的5-7，45-60分钟的会议。几项措施和 计划在计划期间进行访谈，以评估治疗益处和调解人。标准 成功包括每月至少招募2名参与者的能力，至少75％的保留率，至少75％ 患者满意度，以及在信心和生活满意度上的平均变化“最小改善” 其他的。试点研究后，将要求焦点小组成员审查SCISM-D计划草案 手册和消费者手册，以告知调查人员团队的最终修订，并布局 专业设计师（AIM 3）。