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.
The proposed research is relevant to Veterans' health because an effective and implementable strategy that improves self-care of chronic illnesses is expected to ultimately reduce costly hospitalizations, enhance quality of life, and reduce mortality. The proposed research addresses two HSR&D Cross-cutting Priority Areas: Long-term Care and Caregiving and Health Care Access/Rural Health because of its focus on developing innovative strategies to support caregivers and reducing caregiver burden, improving caregiver support, telehealth, assessing innovative approaches to improve access, and leveraging the role of family and social networks to improve access. Results of the proposed study have the potential of benefiting Veterans with chronic illnesses requiring intensive self-care.