Alzheimer's disease and the isolation it produces imposes a heavy burden on informal caregivers (CG) of Veterans who are persons with dementia (PWD); caregiver research indicates that dementia CG carry greater burden than for other chronic diseases. The proposed Story-Call intervention will deliver personalized problem-solving support in the form of story-telling to expand the reach of VA support resources via a mobile phone application (APP) to caregivers of community-dwelling Veterans who are PWD.
Support programs promoting CG involvement can significantly delay Veteran institutionalization as can increased community engagement and early use of community-based services. Interventions reducing CG stress and other burdens can increase CG quality of life and can decrease costs of the disease. However, not all CG reach out to community and nationally-available resources, keyed to issues of work, time, culture, or rurality. Mobile technology allows providers to reach people who may be isolated and need social support.
The Story-Call feasibility study will deliver personalized story-telling support in the form of short success stories generated by caregivers and access to resources via a mobile phone application (APP) delivered to caregivers of community-dwelling persons with dementia (PWD). Our initially-targeted audience consists of working caregivers, particularly minority and rural caregivers. This proposed mixed methods study using a crossover design will use the mobile APP to enhance the wellbeing of working CG. It is expected to decrease their perceived CG burden, increase their use of community resources and services, and potentially decrease CG costs through delay in institutionalization. The expected feasibility outcomes will examine if CG can be recruited and randomized and find the APP-recorded stories easily accessible, practical, and helpful and feedback from VA stakeholders. Summative efficacy outcomes will examine changes in perceived CG burden, social support, involvement, quality of life for the PWD, and access to community resources.
Objective 1: Quantitative: In a feasibility study of a randomized controlled trial, assign two cohorts to use the APP to record and rate stories, complete validated pre-/post-tests, and select from the APP's expanded responses [cases (n=40)] or to receive Internet-delivered informational materials including short vignettes and a follow-up phone call [control (n=40)] to measure differences in CG burden as a primary outcome, and involvement, social support, dementia knowledge, and satisfaction with APP use for trends.
Objective 2: Qualitative: Using constructivist grounded theory, categorize themes from stories and in 2 phases collect: 1) perceptions from follow-up phone interviews with CG participants; and 2) focus groups with Advisory Group and VA stakeholders as a process evaluation of APP appeal, use, impact, and cultural tailoring.
Objective 3: Mixed Methods Analysis: In the tradition of a fully integrated sequential mixed data analysis, integrate the parallel quantitative and qualitative findings in a matrix to evaluate the potential efficacy and utility of Story-Call in its potential to improve CG burden and suggest directions for future testing and implementation.
In preliminary data, our successful proof-of-concept study of the technology demonstrated that brief training enabled four working CG to access our application on the mobile phone, to record their own success stories about caring for a spouse/parent, to view and rate others' stories and to offer additional responses as a way to decrease CG burden and enhance CG well-being. Brief interviews and test scores identified high satisfaction with the APP intervention, and suggested that measuring outcomes via the APP for caregiver burden will be possible. We propose this feasibility study to establish the basis for future testing and implementation as a potential asset to the Office of Connectivity VA Mobile Health and VA Caregiver Support Services.
This proposed sequential mixed methods study will assess how the mobile APP may enhance the wellbeing of working CG (Outcomes: perceived CG burden, use of community resources and services, and CG costs through delay in institutionalization). The expected feasibility process outcomes will examine if CG can be recruited, find the APP-recorded stories easily accessible, practical, and helpful, and solicit feedback from VA stakeholders. Participants in the Story-Call APP group (n=40) will rate and record stories, complete validated pre-/post-test questionnaires, and select from the APP's expanded responses in a 1-month active user test of the APP and two month phone call follow-up, with direct data entry. Outcomes will be measured at baseline, immediately post intervention at 1 month (week 4), and 2 months (week 8) post intervention.
After recruitment through the VA Home Based Primary Care Unit (HBPCU) by mailed invitation letter and follow up phone call of those who do not opt out by postcard, CGs will be invited to informed consent sessions at either the VA Medical Center, their homes or a site convenient to them in their community. This 3-year proposal allows for the difficulty in recruiting CG of PWD who are often too busy to drive up to 2 hours to volunteer for a study. After appropriate explanation and informed consent, CG will be given baseline pre-intervention questionnaires. The primary outcome of CG Burden will be measured with the Zarit Caregiver Burden Interview, Short Form. The secondary outcomes will collect data on two CG measures that contribute to CG burden: a) social support and willingness to become involved in groups or social networks, and, b) a measure of quality of life for people with Alzheimer's disease.
The qualitative Objective #2 will generate 3 sources of data:
a) The recorded stories will constitute a database of common situations that CG encounter caring for Veterans who are PWD. The stories will provide evidence of personal agency, locus of control, and strategies of coping and problem-solving that play a major role in Veteran quality of life and CG well-being.
b) Follow-up phone interviews with CGs exposed to the mobile APP will assess the utility of the APP and archived stories;
c) Three stakeholder focus groups are planned before and after with (1) an Advisory Group; (2) Clinical service providers; and (3) HBPCU group, to explore their pre- and post intervention perceptions of CG, problem-solving, and use of the Internet, VA, and community services.
Aim 3: Mixed Methods Analysis: In the tradition of a fully integrated sequential mixed data analysis , we will integrate the parallel quantitative and qualitative findings to evaluate the potential efficacy, feasibility and utility of Story-Call for future testing and implementation.
The preliminary findings concern the construction and implementation of the mobile APP Story-Call. It was beta-tested in two forms, before arriving at the final 60-scond long version for stories.
The expected outcomes will examine if CGs find that the APP-recorded stories decrease perceived CG burden and increase social support as efficacy, while confirming feasibility in recruitment, acceptability, practicality, increased adaptation to dementia care, and use of community resources. If tested as efficacious, it will be submitted to the VA Office of Connectivity VA Mobile Health and VA Caregiver Support Services for consideration of the need for further effectiveness testing and potential national dissemination.
- Davis B, Nies M, Shehab M, Shenk D. Developing a pilot e-mobile app for dementia caregiver support: Lessons learned. Online journal of nursing informatics. 2014 Feb 2; 18(1):1-10.