Perspectives of Alzheimer's Caregivers on the Affordable Care Act: A Thematic Analysis of Social Media Discussions

Purpose

Most existing interventions to support Alzheimer’s caregivers focus on at-hand services and education to reduce caregiving burden and promote caregiving skills at the individual level. There is limited attention to caregivers’ perceptions toward the larger health care system. Some sections of the Affordable Care Act (ACA) such as protections for pre-existing conditions can assist caregivers many of whom suffer from various health problems. The ACA can enhance caregivers’ health and well-being by allowing them to enroll in health care coverage at an affordable cost. However, there is limited understanding of whether and how caregivers respond to the policy changes. As the Internet has grown as a primary source of sharing information and connecting people, online media has been increasingly used to support Alzheimer’s caregivers. By analyzing online discourses posted on discussion forums among caregivers, this study aimed to explore perceptions of the ACA among Alzheimer’s caregivers. Social media data, also known as ‘big data,' have strengths in providing insights through the complex collection of voluminous data source in near-real time.

Method

Data was collected from discussion forums for informal caregivers on the Alzheimer’s Association web page posted from 2010 to April 2017. This is a major Alzheimer’s support website that uniquely provides publicly open forums. Using three search terms including ‘Affordable Care Act, Obama care, and ACA,' we identified 31 main posts with a total of 347 threads that contained the exact search terms in the texts. Data-driven thematic analysis was conducted using Dedoose, an analysis tool for qualitative and mixed methods data.

Results

Four themes were identified in caregivers’ statements: (1) ACA only for care recipients, (2) confusion and mistrust, (3) lack of knowledge of the ACA among health professionals and caregivers, and (4) active learners and supporters. The ACA was mentioned only about their patients’ health care, related government health programs, and medical costs. Due to the diversified changes in related government health programs in many states and by private health insurance, caregivers experienced disorientation and complained about the federal health programs. Lack of updated knowledge about the revised programs among health care professions seemed to play a role in increasing uncertainties and concerns among caregivers. Nevertheless, in the online discourses, caregivers actively shared updated information and research and cohesively encouraged each other to understand and challenge the systematic barriers.

Conclusions and Implications

Caregivers did not acknowledge how the ACA could be helpful to their own health. Although the ACA has leeway to help caregivers directly, such benefits were not discussed among forum participants. Nevertheless, given that many caregivers consider the federal health program benefits only for their care recipients and experience the ACA through different programs in each state, accurate information about the program is needed to promote awareness of the benefits that caregivers can access in each state. Educating gerontological social workers and students on the ACA and related health programs in each state is a prerequisite to support caregivers professionally and efficiently.