This study provides qualitative evidence on the factors that influence home based care provision in disaster-affected communities, including the barriers and facilitators faced by both patients and providers in preparing for, responding to, and recovering from a disaster. HCPs themselves are a part of the community of individuals affected, as they live in the disaster-affected communities where they work.
Home health agencies participating in Centers for Medicare and Medicaid programs, such as those in this study, are required to have disaster preparedness plans for the agency as a whole, and individual plans for patients. Components of these disaster preparedness plans may include evacuation planning, triage, storm and flood preparation planning, wound care education, resources and literature, alternative dialysis sites, specialized diet education, and communication with the home health care agency at the time of a disaster. Despite this careful planning, barriers remained, particularly around financial concerns, transportation, and health and mobility issues, but also based on attitudes and opinions formed by past disaster experiences.
This study also observed barriers around formal supports by their patients, particularly among interactions with insurance agencies and governmental resources. The associated complexities and delays seen with these formal supports were a source of frustration, and even despair, for the patient population served by HCPs. Notably, reducing complexity was a major stated goal in FEMA’s 2018 strategic plan [24]. Progress on actions to reduce complexity at the community level will benefit from both continuous evaluation and ongoing community stakeholder involvement. Mistrust of the government is not a new challenge, but is a place for still-needed intervention [25, 26]. This study can inform future policy advocating for closer cooperation with organizations that provide formal support, particularly around leveraging the trust of HCPs.
While our study guide was focused on how providers supported patients through the hurricanes, with questions around efforts to prevent chronic disease breakdowns and thereby avoid hospitalization, larger themes emerged about how to holistically support patients. Participants emphasized the value of the community itself, their own place as members of the community, historic mistrust in governmental agencies, and the challenges senior Americans face living on a fixed income. Using our abductive analytic approach [22]—which seeks to uncover surprising or anomalous findings—we were surprised to hear less about specific patient care experiences and the logistics around deploying preparedness plans (which did exist and were used), but instead more about the determination of providers to care for their patients in a resource-constrained setting, and about the barriers of fixed incomes, limited literacy, and distrust in formal response and recovery methods— in setting the course for recovery.
In keeping with our use of the social-ecological model alongside the disaster management cycle of mitigation, preparedness, response, and recovery, a significant effort at the policy level is needed to improve trust in order to better serve populations affected by disasters. Formal support agencies can focus on building relationships with local community leaders as a mitigation strategy. This could include strategic efforts with stakeholders from these organizations and community leaders on how to best support members of the community, with attention on how to improve disaster response and recovery service delivery at the local level. To further capitalize on local resource networks, formal support agencies can focus on how to work alongside community organizations, including having these local organizations take the lead on response and recovery, perhaps with financial support from formal agencies. Immediate action steps to take would be to include home health agencies into community-wide planning, training, and drills. This would perhaps have multiplicative positive impacts, including further preparing home based care providers and home health agencies, multiple groups learning from each other, and the establishment of formal and informal relationships that may arise from interacting together.
We also saw the importance, and value, of the relationship between the HCP, the client, and the community in this study. HCPs often provided support and assistance to clients outside of expected clinical practice, including help with filling out forms or navigating resources on the internet. HCPs had to adapt their practice after the disaster to address concerns outside of health, doing so with the knowledge that without this assistance, clients would be at risk for social issues that would ultimately affect their health. Given that HCPs often have established and trusting relationships with their clients, formal organizations could coordinate with home health agencies to understand the needs of their clients and develop shared strategies to support clients in promoting response and recovery.
Our study highlights the need for an ongoing focus on equitable solutions to support structurally marginalized communities throughout the disaster management cycle. Despite existing efforts by organizations targeted towards these communities and preparedness planning done by HCPs, our study found that many still reported experiencing inequities as a result of the disaster. Participants identified a need for strategies to support low-literacy populations. An area also identified as a need is for focused interventions around evacuation education for those who cannot or will not evacuate. Many participants observed clients reluctant to evacuate due to past experiences, financial concerns, or mobility issues. There is room for improvement of the emergency preparedness planning routinely done with clients, as our study noted that for some clients, the needed steps to prepare were not taken. HCPs can work to identify the barriers around preparedness actions, such as why their patients do not plan to evacuate, and work with them to develop a safe plan, in conjunction with emergency response planners [7, 8]. On top of this, research is needed that critically analyzes the effectiveness of current preparedness and response planning, including how to better support those whose reported intention is to not evacuate [27, 28].
Limitations
This study does have limitations that prevent the findings from being widely generalizable. First, this study is set in two hurricane affected areas, and included only 25 home based care providers. Second, the majority of participants were white women, and therefore this study does not represent the diverse perspective that is needed to better understand and support structurally marginalized communities. Also needed is the study of a large scope of types of disasters and communities with differing sociodemographics. However, this study is one of few that gives voice to the important insight of home based care providers during disasters and community emergencies.