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）是一种改变生活的事件，通常会导致永久性的伤害。 瘫痪和感觉丧失，随后丧失身体功能和独立性以及消极的风险 大约 25-51% 的获得性 SCI 成年人患有 AIS D SCI，并且具有良好的心理社会结果。 步行预后良好，残疾程度较轻，并且通常具有更好的客观健康状况，例如 然而，与直觉相反的是，具有 AIS D SCI 的退伍军人的比例更高。 主观幸福感 (SWB) 较差的风险，包括抑郁症和自杀意念发生率较高。 已经提出了可能解释福祉差异的因素，包括不太严重的康复 服务、工具和社会支持网络发展有限、合并症患病率较高 鉴于主观幸福感对于生活质量至关重要，因此这一点至关重要。 了解和培养那些在 SCI 后最能支持 SWB 的技能、观点和资源。 具体目标：本研究将制定第一个针对退伍军人福祉的干预措施 AIS D SCI 通过自我管理方法满足他们的特定需求。 (SM) 计划的独特之处在于培养参与度、知识和权威，以直接护理患者 一项以 SM 为导向的计划，专为患有 AIS 的退伍军人的需求和治疗偏好而定制。 D SCI 在改善福祉方面有着巨大的前景，因此，拟议的研究将开发 SCI 自我。 AIS D 管理 (SCISM-D) 计划，一项单独管理的个性化支持和技能 通过退伍军人管理局的视频远程医疗到家技术进行培训干预，以改善退伍军人的福祉 与 AIS D SCI 一起，这项研究对于退伍军人医疗保健具有重要意义，因为该研究提出了建议。 SCISM-D 计划预计将填补关键的医疗保健空白并改善终生社会心理 具有 AIS D SCI 的退伍军人的功能 本研究有三个目标：（目标 1）开发 SCISM-D 以增强功能。 具有 AIS D SCI 的退伍军人 SWB 使用初步研究和焦点小组（目标 2）开展 改进 SCISM-D 的试点研究并测试 SCISM-D 的可行性和可接受性，为未来做好准备 （目标 3）完成 SCISM-D 计划手册和消费者手册。 研究计划：对于目标 1，两个由 4-6 名具有 AIS D SCI 的退伍军人组成的焦点小组和两个由 4-6 名 SCI 的退伍军人组成的焦点小组 将招募提供者在两次会议期间审查、评级和讨论 SCISM-D 的拟议组成部分 每个信息均由焦点小组评级和反馈、SCISM-D 计划手册和消费者提供。 手册将根据现有的 SM 手册进行改编。 然后将由调查人员制定完整的计划手册和消费者手册。 提交给焦点小组和专家小组征求反馈，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，以检验 SCISM-D 和随后的随机研究的可行性 对照试验（目标 2）预计将有 20 名患有 AIS D SCI 的退伍军人完成该研究。 通过 VA 的远程医疗系统进行 5-7、45-60 分钟的会议。 计划期间将进行访谈，以评估治疗效果和调解标准。 成功包括每月至少招募 2 名参与者、至少 75% 的保留率、至少 75% 患者满意度以及信心和生活满意度的平均变化“略有改善” 试点研究结束后，焦点小组成员将被要求审查 SCISM-D 计划草案。 手册和消费者手册，以告知调查人员团队对内容的最终修改和布局 专业设计师（目标 3）。