Simplifying Caregiver Resources in Eldercare: Identifying the Support Needs of Caregiving Employees

Abstract

Background: The majority of long-term care provided to older adults and persons with disabilities is provided by unpaid family caregivers and friends. Employers have a stake in long-term care services as well since 60% of caregivers are employed outside the home, 49% have gone in late, left early, or taken time off during the day to deal with caregiving issues, and 15% have taken a prolonged leave of absence. Additionally, 87% of employed caregivers make telephone calls for caregiving from work. Presentism, the state of being on-the-job, but because of caregiving not fully functioning, can greatly reduce individual productivity. Caregivers emphasize the need for information to assist in their tasks with the major barriers to utilization of caregiver resources identified as lack of awareness of available services, challenges accessing community services, and understanding eligibility criteria. Context: Roobrik is an online decision support tool which uses branching tree questions about caregiver and dependent characteristics to help identify caregiver needs, matching these to local community services. The Council on Aging of Middle Tennessee’s (COA) Directory of Services provides a comprehensive online community resource guide. The human resources department of four Nashville-based employers previously supportive of COA’s work were contacted and agreed to provide information to employees experiencing caregiver concerns. Volunteer employed caregivers willing to utilize the Roobrik Tool and the COA directory and contribute to a focus group discussion were invited to participate. Methods: Phase I. Focus group responses from 19 participants were recorded by an experienced journalist and primary themes categorized by the focus group leader according to questions posed to the participants. Phase II. Secondary themes were developed by expert consensus following review of individual responses by three investigators guided by categories of the 2015 National Alliance for Caregiving’s National Caregiver Survey. Results: Caregivers spent less than 15 minutes to research and determine the most appropriate local care options. Half of caregivers contacted later planned to act on these recommendations. Based on focus group questions, primary themes were identified: 1) utilization of automated decision support tools, 2) how decision support tools help caregivers understand the caregiver role, 3) ways to improve decision support tool function, and 4) recommendations for improvement of decision support resources. Based on the content of specific caregiver responses, these secondary themes were identified: 1) information needs-medical, legal, quality of life, and the processes involved in obtaining services, 2) needs for specific community support services, 3) need for informal and professional emotional support to reduce caregiver stress, and 4) ways the workplace can support employed caregivers. Workplace policies including flexible time, caregiver support groups, and working remotely may be beneficial to caregivers as well as the workplace. Conclusion: Our experience implementing a demonstration of the Roobrik tool coupled with the online COA Directory of Services suggests these may be useful and accessible caregiver resources that simplify care navigation. Some caregiver needs are beyond the capability of online decision support and may require personal guidance.