“Helping fill that gap:” a qualitative study of aging in place after disaster through the lens of home-based care providers

We developed an interview guide informed by prior conceptual work on disasters, home care and aging, and informed by the conceptual model in Fig. 1 [15‐19]. The guide was refined through pilot testing with qualitative experts initially and then with a small group of registered nurses. The interview guide focused on barriers to health and healthcare access after the disaster, formal and informal community supports, strategies to support preparedness before the disaster, and strategies after the disaster to support safety and aging in place. The final interview guide was constructed for a goal interview length of 45 to 60 min (see guide in Supplement).

Licensed healthcare providers who were employed by home health agencies in counties affected by Hurricane Harvey or Irma were included in this study. The study sample was derived using two sources: first, counties with Federal Emergency Management Agency (FEMA) individual assistance disaster declarations [3]. Individual assistance – support for individuals in need of assistance rebuilding homes and businesses – was conceptualized to be a useful metric of the extent to which a large-scale storm devastates community infrastructure. We prioritized home health agencies (HHA) operating within counties with individual assistance declarations. In order to capture the perspective from the home-based care workforce on caring for historically underserved patient populations, we took into consideration county demographic statistics on socioeconomic status and race. Counties with higher numbers of residents describing themselves as Black, Hispanic, Asian, and “other” were prioritized in the recruitment process, as well as counties with a median annual income closest to 2017 Federal poverty guidelines.

Our convenience sampling strategy recruited from home health agencies and started by contacting the 164 home health agencies in the counties that met the two criteria described above. All 164 agencies were contacted via telephone by a member of the study team, who explained the study to the agency administrator or their representative. If there was no answer or no one available to take the call, the agency was called back for a total of five times; after a fifth unanswered call or request for a call back, the agency was removed from the active calling sheet. Out of 164 agencies called, participants from five agencies attended focus groups. A sample size of 25 was targeted as we expected this number would provide adequate saturation of major themes [20, 21].

Data was analyzed using an abductive analytic approach [22], a method for analyzing data that combines inductive and deductive approaches allowing purposeful examination of a range of explanations, thereby reducing the likelihood of bias. The focus group conversations were recorded digitally and transcribed by a secure professional transcription service. After removing identifying information from the transcripts – including the mention of a specific facility, other clinician, or family member – the transcripts were formatted for coding. Using an iterative process, two research assistants independently generated codes in light of existing theory in keeping with abductive analysis, including the SEMDR framework.

Five focus groups were conducted with between two and six participants in each group. The five focus groups included a total of 25 home-based care providers. Of those that reported their occupation (80% of participants), 65% were Registered Nurses (RN) and 20% were Licensed Vocational Nurses (LVN). Of those that responded to the demographic survey [22], 12% were male and 88% were female. The majority of participants (84%) identified as White or Caucasian, 12% identified as Hispanic, and 4% as Black. The average length of time participants had been in their profession at the time of the focus group was 16.5 years, ranging from 3.5 to 39 years.

We identified eight themes (see Table 1).

Participants described community support from institutions such as schools and faith-based organizations as leaders in the recovery effort. They provided gathering spaces and ready-made teams of people, such as members of local football teams and church congregations, to take on recovery activities such as mowing lawns and clearing debris. One participant described these informal supports:

I feel like it was much more of a community effort than it was an organized effort … And it was just anybody and everybody that could did, and they did whatever needed to be done. People took people in, strangers. I don't know you, but I have two bedrooms. You can come stay at my house till we figure out what's going on. Large groups of people just going through neighborhoods and literally mucking out, starting at one end and just mucking out and taking out furniture and things like that (B2).

Participants noted that older adults trusted their communities rather than governmental agencies as a primary source of support. Local organizations were described as being able to tailor their effort to the needs and values of the community. According to one participant,

At the end of the day, it was a community, helping community. They realize that government was not going to be their solution (E5).

Conversely, government agencies and insurers were seen as lacking in their efforts to supplement individual-level disaster support and community response. Participants reported that numerous barriers existed to applying for financial assistance for their older adult patients, largely because the application processes were challenging to understand and there was a lack of follow-through by the disaster aid agencies even after applications were completed.

I did have several patients that had to deal with FEMA … but they would just laugh about it, not really laugh about it but it's not ever going to happen because they couldn't figure out how to do it correctly or it's too big of a hassle to do it. They couldn't even do it. Their families were working on it or a daughter or son or somebody was working on it and even they were having trouble (E4).

Providers reported that the hurricanes more severely affected those who rely more on supportive services, especially those older adults with disabilities or health conditions and those with lower socioeconomic status. Participants used evacuation efforts as an example. Aging adults and those with mobility issues required additional time, resources, and planning measures to successfully evacuate. Participants acknowledged that many of their patients did not evacuate due to a lack of alternative housing options, an inability to pay for temporary lodging and discomfort with evacuation shelters. In addition, they reported that community evacuation assistance programs were not always available to those living in rural areas.

When you evacuated for a hurricane, you're on your own and you have to pay for it … So then they're stuck going wherever they can get a shelter to take them and stay in the shelter for a while (D4).

The only problem I think I've heard about that though is that you have to meet at a designated area and a lot of our homebound patients, especially if they live alone. I remember talking with one gentlemen about 2-1-1 and he's like, "Well, why? Because I live out in the middle of nowhere and I don't have the capability of getting to the designated area for them to pick me up" (E3).

Receiving information and accessing essential services presented additional challenges that posed barriers for aging adults. For example, participants reported that patients had to wait in long lines to apply at service centers, which disadvantaged aging adults and those with mobility issues.

I had a patient's home that flood and they couldn't get any assistance and she was going and standing in line for six, seven hours at a time. And if you got out of line, you lost your place, you had to start all over. She was wore out from just doing that because they didn't even have chairs for them to sit or anything (D4).

Participants identified that much of the information about available disaster preparedness and response resources was not communicated in a way that was relevant or easily available to their clients. Most agencies and organizations leverage social media, smartphone applications, and online methods of communication for mass rapid dissemination of information. While useful, these channels were not accessible to all aging adults, especially those without internet or mobile devices. The consensus among participants was that uneven access to disaster response resources led to prolonged and difficult disaster recovery for vulnerable older adults.

According to study participants, the ability to prepare for and recover from a disaster, as well as the speed at which these processes can happen, were influenced by socioeconomic factors such as education level and income. Many patients served by the providers in this study live on the fixed incomes offered by government assistance programs such as social security and disability. One participant noted some of the patients they see have low literacy, making it challenging to apply for disaster recovery assistance.

The other thing I wanted to say is our elderly population here, a large percent do not write. They don't write. They don't know how to write because of their education level … Or read. So the FEMA program has to have people that can understand that to help these people (E4).

Personally, I have a family member who had, so two family members. One of his brothers was very educated, understood the system, worked hard with the insurances, played hardball with them and got his house rebuilt probably within a year, was completely rebuilt while his younger nephew was in the poverty level, didn't really complete more than grade school... and his house is still not built till today … So it's interesting how education level really helps get you through the systems of insurance and the red tape (E2).

Participants shared that inadequate financial resources were a barrier to preparing for the storms. Preparedness supplies were described as a luxury, as many patients had limited margin to purchase supplies or resources needed to adequately prepare for the disaster.

That everybody is really just one paycheck away from devastation. So when something of this magnitude hits their lifestyle, it can drive them and send them over the edge to great proportions (E2).

And so to say, do you have an emergency fund? Do you have extra supplies put by? Well, no, I need these on a day to day basis (B4).

Family served a source of support central to older adults’ ability to prepare for and recover from the hurricanes, according to participants. Whether it was assisting with evacuation efforts, wound care after the disaster, or providing emotional support, the formal and informal caregiving in various forms provided by family increased patient wellbeing during and after the disaster. Participants cited a multi-generational scaffolding of family support; older adults and younger family members benefitted mutually.

Having four generations in one household lends to that help that they need emotionally because they can say, "Look, I've been here for 50 years. I survived 50 storms. It's just materials we can build. We've got each other." (E2).

And here in <location redacted>, it's a cultural difference from where we're from up North. We have two generations, three generations in one home (E5).

Overall, there was a general agreement among participants that the presence of family members was a significant factor that determined whether older patients were able to adequately prepare for, evacuate from, and recover from disasters.

If you don't have family that lives somewhere and a lot of these people don't, they don't have the resources to pay for [evacuation] (D4).

“What am I going to do? Where am I going to stay? I can't afford a hotel; I don't have any family anywhere else. This is where all my family is at” (E2).

Family members also supported home care providers with formal caregiving in circumstances where providers were physically unable to reach them due to flooding or other hurricane-related transportation barriers. Providers relied on family members to facilitate patient-provider communication, continuation of care, and compliance with essential medications.

[We told patients, we’ll] write down your wound care instructions for you because your family is going to have to do it wherever you're taken to (B4).

I asked her who she would be living with, her sister. I needed that phone number; I had her phone number and then I got the daughter's phone number and the location where the daughter was at. So we can try to keep ... At least have more than one phone number to locate somebody (D4).

Participants described that some patients took less action to plan for their health needs during disasters. Participants highlighted the tension between their patients’ desire to remain autonomous and age independently and their need for health, social and community resources, especially after the hurricanes.

For the patients that we see … they have lived in Texas for all of their whole, entire life for most of them. And their strength and everything was so pronounced prior to the storm that's going to be, and nothing can get us kind of attitude (B5).

I always tell people, "Please leave before the mandatory evacuation," because when they're sick, it's truly too late for them to leave. (D2)

Participants described that their patients cited that since past hurricane experiences did not result in serious damages, which would then negatively affect their motivation to take preparedness actions. According to participants, patients failed to account for the severity of recent storms.

I think it's that 500 year storm mentality. It won't happen another 500 years and what? We had two here within … The last two years (D3).

Both participants and patients who had lived through many hurricanes did not anticipate the strength of Hurricanes Irma and Harvey and were unprepared for the enormous amount of damage that occurred. For many patients, participants described how the unexpected strength of the storm paired with the feeling that they were well-prepared for having lived through so many previous hurricanes led to an overall decrease in actual preparedness.

I think that we've lived here so long, we're used to those hurricanes … So that's what happened, a lax … attitude of, "We've lived through all of them” (D2).

No one expected that kind of flood. I'm 56 years old. I've never seen it. I've never ... I've lived here my whole life (D2).

Participants noted that it was not just patient attitudes and opinions that limited preparation for disasters. They identified systemic barriers to preparation as well. Participants described issues with insurance companies denying requests for extra medication and supplies needed to sufficiently bridge patients in the event of pharmacy closure or dysfunction during the disaster.

But that was a real problem and also insurance being what it is, they won't let you refill your prescription until five days before it's empty. And so people can't prepare (B4).

Insurance is not going to pay you to have a little packet, they're not going to give you extra wound care supplies, they're not going to give you extra medicine, they're not going to prepare you for that (B2).

In addition to insurance companies, participants also identified systemic problems in the organization of home-based care. Bureaucratic regulations result in a shortage of supplies and funds for their patient population, putting strain on an agency when they have to provide extras or when they run out and need to allocate accordingly.

So usually what happens is traditional Medicare people, their supplies are part of the payment that we get. But any other insurance or Medicare HMO, we set them up with a supply company and that is paid for separately. We don't supply them. But in this instance, it's either supply them or they won't have anything. So we supplied people but that was expensive (B6).

These systemic barriers not only contributed to patients’ and providers’ inability to adequately prepare for the disasters, but also had implications for home health agencies after disasters.

Participants described patient stress from the loss of property and material possessions. They noted that the loss of possessions that held sentimental value, such as pictures or family heirlooms, represented the diminishment or disappearance of a sense of belonging. Participants also described patients who did not evacuate because their identity was intertwined with their material possessions. For those patients who did evacuate, participants detailed their devastation upon returning home and surveying the storm’s damage to their houses and belongings.

And when you walk in afterwards and you see who've been displaced from their home that they've had for 40 years, everything, all of their Elvis figurines, all of their elephants with the trunks up, are all gone … So a lot of these people ended up losing their furniture, belongings that they had in their families for a very long time. Things that were really important to them (B5).

The feeling of defeat of living in a one bedroom apartment compares to that three bedroom house that they've had for 40 years is absolutely the defeat and the psychological ‘why live’ anymore. And when you get to be older it is a why live anymore kind of feeling and how can you help them with that (B5).

But they'll still tell you to this day, they're not going to leave their homes, because I feel that's ... They feel that's all they have and that's where they're going to stay (D4).

Disaster-related trauma and stress were evident to participants in both their patients and family caregivers. Participants attributed to stress from the disaster a decline in health for some providers’ patients, including worsening symptoms of dementia and other memory impairment and chronic disease exacerbations.

But his wife actually declined quite a bit after the storm from her dementia, just because it was a traumatic experience for her (A4).

I had one patient that had a stroke after the tornado came because of the stress was just too high (E3).

And I think it's stresses those elderly patients to a point where it's almost unmanageable for them, especially the people that have no real resources and there's just so much. I mean, it was everybody, everybody (D2).

Providers also described needing additional training and resources to meet mental health needs, which they described as a barrier to supporting patients.

I didn't realize how emotional it was going to be to see those patients after they've lost lots of things and are with different people and how emotional they were. They were traumatized and so when we would see them, you'd have to be kind of, okay, let me put on a different hat. Let me think. My psychological hat or whatever, because your visit with different definitely, not just because they were somewhere else and they didn't have their supplies, but mentally the patient was different and so our visits were different that way too. I noticed that. (E5)