Web-based Self-management Tool Targeting Patients and their Informal Caregivers

针对患者及其非正式护理人员的基于网络的自我管理工具

• 批准号: 10208961
• 负责人: Ranak Trivedi
• 金额: --
• 依托单位: VETERANS ADMIN PALO ALTO HEALTH CARE SYS
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-05-01 至 2018-10-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10208961
• 关键词: Address; Adherence; Area; Caregiver Burden; Caregiver support; Caregivers; Caring; Cessation of life; Chronic; Chronic Disease; Chronically Ill; Clinical; Cognitive Therapy; Collaborations; Communication; Congestive Heart Failure; Cost Measures; Couples; Databases; Disease; Disease Management; Emotions; Ensure; Exercise; Face; Family; Family member; Feedback; Focus Groups; Frequencies; Funding; Goals; Health; Health Expenditures; Health Services Accessibility; Healthcare Systems; Heart failure; Hospital Costs; Illness impact; Improve Access; Instruction; Internet; Intervention; Interview; Lead; Long-Term Care; Mental Depression; Mind; Modeling; Morbidity - disease rate; Muscle relaxation phase; Online Systems; Outcome; Outcome Measure; Participant; Patient Care; Patient-Focused Outcomes; Patients; Persons; Pharmaceutical Preparations; Physical activity; Pilot Projects; Play; Preventive care; Procedures; Production; Program Acceptability; Program Evaluation; Provider; Qualitative Evaluations; Quality of life; Recommendation; Reporting; Research; Risk; Role; Rural Health; Self Care; Self Management; Services; Social Network; Spouse Caregiver; Stress; Structure; Surveys; Techniques; Telephone; Testing; Theoretical model; Time; Training; Ursidae Family; Veterans; Work; acceptability and feasibility; base; caregiving; clinical care; coping; cost; design; dietary; experience; field study; firewall; health care availability; improved; improved outcome; informal caregiver; innovation; interest; medical attention; medication compliance; member; mortality; online version; preference; programs; prototype; randomized trial; recruit; retention rate; scale up; seasonal influenza; self-management program; skills; social relationships; telehealth; tool; usability; visual media; web site

Self-care is critical to enhancing outcomes among chronically ill Veterans since without optimal self-care, these Veterans face poor quality of life, exacerbations, and imminent death. Existing tools designed to enhance self-care are limited because they often require in person contact, and they do not address the needs of informal caregivers who may be involved in Veteran care. The long-term goal is to improve morbidity, mortality, and patient-reported health outcomes among chronically ill Veterans by improving adherence to self-care recommendations. The objective in this study is to develop and pilot test a web-based self-care program that targets the barriers to self- care as experienced by chronically ill Veterans and their caregivers. We had originally developed SUCCEED (Self-care Using Couples Care EnhancEment in Disease), a 6 week self-care support program that was pilot tested with Veterans with chronic heart failure and their spousal caregivers. This was delivered via telephone or in-person based on participant preference with high acceptability. Lessons learned from this pilot study included the need for a non-disease focused program; the need to engage nonspousal caregivers; and the need to develop self-study programs that can be accessed via the web. Therefore, we propose to adapt our SUCCEED program so that it can be delivered over the web. The central hypothesis is that self-care is the product of patients, caregivers, and their interactions and that eliminating the barriers to self-care as experienced by both the Veteran and their caregivers is necessary to effectively manage chronic illnesses. The rationale is that developing and testing alternate models of self-care is necessary to improve short- term and long-term outcomes of chronic illnesses that impact most Veterans and costs the VA millions of dollars. Guided by previous work and a strong theoretical model, we have developed two specific aims: 1) Develop an interactive user interface for SUCCEED that can be hosted over the web; 2) Field test the web-based program with 30 patients and 30 caregivers. Under Aim 1, we will work with instructional designers and develop storyboards that finalize content, narrative script, and hyperlinks to optimize navigation within the program, and to allow for asynchronous access. We will also develop video vignettes to be embedded in the modules, to illustrate techniques that are best learned through visual media (e.g., progressive muscle relaxation). We will conduct usability testing with 10 participants. Results of the usability testing will be used to refine the prototype. Under Aim 2, we will determine recruitment and retention procedures, assess acceptability of the program, pilot surveys, and conduct a qualitative evaluation using semi- structured feedback from participants. The proposed approach is innovative, because it seeks to leverage existing social relationships between patients and their caregivers to enhance self-care of chronic illnesses. The proposed research is significant because it capitalizes on our existing understanding of how patients and caregivers contribute to self-care, and lead to a self-care tool that is effective, acceptable, feasible within the VA, and can be used in the clinical care of Veterans. Ultimately, having an effective self-care strategy that addresses the needs of patients and their caregivers is expected to improve outcomes as well as quality of life as patients feel healthier, caregivers feel less burdened, and relationship quality is enhanced. For these reasons, this work is being enthusiastically supported by our operational partner, the Office of Caregiver Support.

自我护理对于提高慢性病退伍军人的预后至关重要，因为没有最佳的