A total of 25 participants were included across five focus groups. Of the 22 who responded to the demographic survey, 12% were male and 88% were female. The majority (84%) identified as White/Caucasian, followed by 12% who identified as Hispanic, and 4% as Black. Registered nurses made up 65% of the sample, 20% were Licensed Vocational Nurses (LVN) and 15% were other healthcare professions. The average length of time participants resided in their profession at the time of the focus group was 16.5 years, with a range of 3.5 to 39 years.
Seven themes were generated from the analysis. These themes represent the experiences of home care providers during two hurricane disasters, and addresses the barriers they faced in providing care for older adults during these events and the successful strategies they employed.
1) Preparedness and response must be in tune with community.
Participants described mixed reports about the quality of support provided by formal community organizations that provide disaster services. In contrast, community support from faith-based organizations, university or school groups, and informal volunteers were reported to have held up the community effort in assisting those affected by the hurricane.
“They could come in and get toiletries, clothing, whatever they needed. They were able to come through there because that was more like a donation station because they were one of the churches that didn't flood. So people could go through and get things.” (D4)
“Facebook had a whole app, and so the whole app was Hurricane Harvey assistance or whatever for [name omitted] County. And so people were constantly posting on there if they needed help and people were just volunteering.” (B3)
“This was, I feel like it was much more of a community effort than it was an organized effort. There became this saying called [name omitted] County strong. And it was just anybody and everybody that could do, 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)
Furthermore, participants described a sense of reliance on supports coming from their own community. Community members took on front-line roles in the response, providing valuable insight on response efforts due to their knowledge of community intricacies.
“I mean really the only positive thing is that people that were here and really the community all looked out for each other and was very helpful even if they weren't in the medical field.” (A4)
“At the end of the day, it was a community, helping community. They realize that government was not going to be their solution." (D4)
2) Perceived unreliability of government and corporations.
Participants expressed an overwhelming consensus that federal resources (such as FEMA) and insurance companies were viewed with mistrust by their clients. A primary barrier to clients receiving disaster support was the application process, which they described as challenging to decipher, and even once completed, there was no follow-through about the status of the application. They also described poor communication in the event they were able to speak in-person to representatives.
“I think the other thing about that is that the application process was very complicated. We tried
to pull a lot of community information for people because the County would publish, go here for FEMA help, go here to access. You've got to fill out these forms, you got to talk to these people. But it's a very complicated process.” (B6)
“Many people told me the FEMA people got mad at them, which with some of our elderly people, you get mad at them, they're done, they shut down, they're done. They're not going to be disrespectful. They're just done. And so that's an issue in my opinion.” (E4)
“And yet they paid in to their insurances all this year, never missed a payment, and are not getting any help either on that end.” (E6)
3) Disasters exacerbate inequalities.
Participants described how the disaster disrupted the way their clients access essential services and information, where such disruptions were described to have a greater impact on those living with disabilities, limited literacy, and/or low socioeconomic status. Many participants reported having clients who stayed home, were reluctant to evacuate, or lacked an acceptable place to evacuate to, citing mobility issues or poor experiences in previous evacuations.
“He didn't have to evacuate from his home, so his home was okay. It's just that he couldn't get the supplies that he needed to live basically.” (B3)
“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)
“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. And so what they typically find is they find the family member who they think has the most sound structure. And that's typically what they'll do to ride out the storm and they'll suffer through heat and humidity and mold if they have to, just to make sure that everybody's safe." (E2)
Participants also stated that for limited education around health and safety in the aftermath of disasters was also an issue. They described how this lack of education contributed to unsafe living conditions.
“If you have floodwaters in your house, you can't be walking around with your bandaged foot, and there's so many people doing that. So many people. Well first of all they didn't have tools but also just not aware of the danger of doing that.” (B5)
4) Importance of Family.
Study participants described a multi-generational family-centric value system for many of the populations they serve. Relying on family members for preparedness and support in times of crisis is a part of this. They described how their patients will look to family members to assist with communication, continuation of care, and participation in an active role in caring for the patient. Being displaced after a disaster was a source of stress and care interruption; having family to rely on during times of crisis alleviated some of those effects. However, family caregivers experienced additional burdens as a result of their role as caregivers.
“We have a lot of patients that their husbands or wives are elderly as well and very sickly. We would see some of our patients that were extremely sick trying to take care of their loved ones that were also sick.” (B5)
“The people that I saw, two, three people, they're elderly, they didn't have insurance on their house so they got relocated to children's house. And of course then you have the emotional and all the issues and the conflict and all that.” (E3)
“Write down your wound care instructions for you because your family is going to have to do it wherever you're taken to.” (B4)
“Some of them had to leave their animals because the one lady that I told you about that couldn't walk and now she is, she had a dog. But thankfully, she had family that was able to tend to him while she was going through all this and he's back at the house with her.” (D4)
5) Barriers to implementing preparedness plans.
Home health agencies participating in Centers for Medicare and Medicaid programs are required to have disaster preparedness plans, which are communicated to clients upon admission into home health services. These tailored plans are designed specifically for a client’s care needs and also provide information on community resources and education for them. Components of this disaster preparedness plan 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 care agency at the time of a disaster.
“We do all this on admission. We get the emergency plan put in place for each patient. It's individualized. Everything's on there, if they're tube feeding, if they have a CPAP. I mean everything, how they walk, how they communicate, the whole works. We register them with [redacted] if they weren't registered. Or we put on there if they're wanting to be evacuated by family or whatever. Everything's on this one, on the one stop sheet…Everything's on that plan. Then, we also give them emergency management packages which is information packages. Everything from hurricane tracking information, all the way through to what to have as emergency storage, foods, things like that. All in this little booklet that we give them. It comes in multiple different languages. It comes from the Office of Emergency Management. We put that in there for them.” (C3)
“We confirm what their evacuation plan is, and talk with them about, okay, you have to leave, where you going to go? What are you going to bring with you? How are you going to get there? What are you going to do?” (B3)
However, despite the efforts of study participants to prepare their clients, a breakdown in the actions required by their patients was described. They cited reasons for this such as financial concerns, lack of transportation, and health and mobility issues, but participants also held the view that many believed the storm would not cause substantial damage.
“And so those types of preparations, I don't know that we could do any better just because of the way the world works. You tell people to have two weeks extra of their medicines, but there's really no way to do that. That's a real problem.” (B4)
“Then, like I said, you'll get the call from the family. It's like, ‘We just don't know what to do.’ ‘Really? We've been at you for a week... giving you information. We've prepared you since admission.’”(C3)
6) Balance between caring for self and family and caring for patients.
HBCPs described experiencing multiple stressors as they juggled patients’ disaster-related needs with those that they and their own families were experiencing. Participants cited challenges with ensuring their patients’ well-being as well as that of their own families. Participants reported the critical importance of having personal preparedness plans in place for their own families to make sure they were taken care of while the provider was working with patients. They reported feelings of helplessness because they were not able to help patients regain lost possessions or provide answers while simultaneously caring for the same issues for themselves and their own families.
“So we're calling all of our staff because one of the first things that we've got to make sure is that our staff is prepared in getting their family taking care of… So that they don't have to worry about them, while they're taking care of our patients.” (C2)
“You need to understand your own personal plan and you need to understand who's responsible for your family while we need you here, so we have designated who's at the beginning of the disaster, who comes back at the end of the disaster and how that works.” (B3)
“And the mother of the patient kept asking me, "Have you heard anything? Do you know when the power's going to come back on?" And I just had no answers for them and that was difficult too.” (E4)
“Because it impacts their health for sure. Our goals and stuff, everything because of what they're dealing with personally. And then it's frustrating because I don't know where to go….I can see what they need and I'm like, I have no idea where to start.” (E4)
“I was considerably more concerned about my patients than I was my family. I knew my family was basically okay, but my patients were not. My son lost everything in Hurricane Harvey but I knew that physically he was okay, and I knew that we would be able to help him and he was going to be okay. So for that reason I didn't worry as much about my family, but my patients, I can't fix those kinds of problems for them. And maybe when I grow up I'll get to the point where I don't feel like I should.” (B2)
7) Resilience and adaptability of home-based care providers.
Home-based care providers reported numerous instances of supporting their clients beyond providing health care. Whether it was helping with disaster relief applications or navigating insurance websites on the internet, clients often had no other options for assistance with these tasks. HBCPs stated they viewed these types of support for their clients as out of their expected role, but also a necessary part of keeping their clients healthy and in their homes.
“So then when you see the patients, you're there to deal with their medical concerns and we're supposed to be doing our wound care, whatever but you're also having to deal with all the other stuff because that's part of what they're dealing with right now so then that gets thrown on you and so then you're dealing with that right now because you don't want to just leave them there with no type of solution or help. So then you get three different hats on and try to figure out how to take care of them.” (B5)
“She (the HBCP) brought him diapers because she wasn't sure whether they took them with them, when they evacuated. So she just brought diapers with her, just in case. She stopped off at a grocery store that was open and bought them herself. I mean, so, everybody... It was everything from just whoever was looking after the patient, jumped in. (C3)