The impact of caregiving burden on the health and well-being of family caregivers (FCGs) is increasingly recognized as an important public health issue. While all FCGs face challenges, those caring for patients with brain tumors are at a considerable risk for burden due to notable patient characteristics: rapid disease progression, significant physical/cognitive debilitation, and personality and behavior changes. FCGs who have adequate support from their social networks (including friends, family, and acquaintances) experience less burden and better health. However, many FCGs underestimate the willingness of others to help and cut themselves off from support networks to focus on caregiving tasks. Health care providers (HCPs) have been urged to help FCGs engage their social networks to provide support, but have no user-friendly clinical tools to facilitate discussions. We propose to meet this need through an electronic Social Network Assessment Program (eSNAP) to automate the efficient capture and visualization of FCG social network data.
The aims of this proposal are to: 1. Refine eSNAP data-gathering and visualization prototypes based on evaluations of user experience, and 2. Test the feasibility of implementing eSNAP in a neuro-oncology clinical setting. We will achieve Aim 1 by conducting usability testing in a simulated clinical setting with former neuro-oncology FCGs to refine the eSNAP prototype. We will achieve Aim 2 by piloting the final version of eSNAP in a neuro-oncology clinic with current FCGs and collecting preliminary effectiveness data on FCG outcomes (FCG quality of life and stress) and mediators (FCG social support utilization and burden). Support network resource visualization using eSNAP works in two ways to improve FCG outcomes. First, eSNAP helps FCGs to organize their social resources and the visualization helps to remind them of these available sources of support. Second, eSNAP can facilitate more efficient FCG-HCP communication. HCPs can easily identify FCG needs within the eSNAP visualization and target these needs through problem-solving or referral to formal services. Consistent with the buffering hypothesis and the stress process model, the support facilitated by eSNAP can reduce FCG stress, improving FCG stress and quality of life outcomes. eSNAP is an intuitive, user-friendly social network visualization tool designed for clinical use. It is easily scalable for application to broaer cancer FCG or patient populations. eSNAP also provides a means to meet Institute of Medicine recommendations to include social connectedness data in electronic health records. This pilot will provide the foundation for a larger trial of eSNAP to test its impact on a larger group of cancer FCG quality of life, utilization of social support resources, and quality of communication with HCPs.
Harnessing existing social support resources is a simple, cost-effective, and sustainable way to address the public health issue of burden associated with cancer family caregiving. This project will refine and test a tool to collect and visualize cancer family caregivers' social resource information as a way to encourage use of existing social resources and to help health care providers problem-solve caregiver social resource needs.
| Reblin, Maija; Ketcher, Dana; Forsyth, Peter et al. (2018) Feasibility of implementing an electronic social support and resource visualization tool for caregivers in a neuro-oncology clinic. Support Care Cancer 26:4199-4206 |
| Reblin, Maija; Ketcher, Dana; Forsyth, Peter et al. (2018) Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers. J Neurooncol 139:643-649 |
| Reblin, Maija; Wu, Yelena P; Pok, Justin et al. (2017) Development of the Electronic Social Network Assessment Program Using the Center for eHealth and Wellbeing Research Roadmap. JMIR Hum Factors 4:e23 |
