Home-Based Care and Mental Health during a Disaster

Abstract

Disasters adversely affect individuals’ mental health, yet research is scant on the mental health needs of frontline workers during and immediately after disasters. Our study explored this gap through the perspectives of home-based care providers (HBCP) who provided care during and after Hurricanes Irma and Harvey. In this qualitative study, five in-person focus groups were held between January and November 2019 with 25 HBCP drawn from home health care agencies in southern Florida and the Greater Houston Area. Four themes were identified using an abductive analytic approach: HBCPs’ disaster-related mental health needs; HBCP resilience in the context of disaster; psychological tensions associated with simultaneously caring for self, family, and patients; and supporting patients’ mental health needs during and after disaster. Our data suggest that HBCP may benefit from formal training and interventions to support their own mental health as well as that of their patients in the context of disasters.

Introduction

Disasters are known to have tremendous impacts on infrastructure and economies, as well as the individuals responding to them. Disaster affected individuals experience widespread adverse effects to their mental health and wellbeing, which vary from inadequate coping to more significant psychological impairment, such as mental health disorders (Goldmann & Galea, 2014; Norris et al., 2002). Although the psychological impact of hurricanes may exceed their impact on physical health, both the mental and physical health consequences of hurricanes can be long-lasting (Espinel et al., 2019; Shultz & Galea, 2017). Disaster affected individuals often do not receive mental health treatment and are known to have unmet mental health needs (Hoffer & Buie, 2016; Lowe et al., 2016; Wang, et al., 2008;). With climate change fueling an increasing frequency and intensity of disasters, additional research is necessary to learn from past disasters and to better prepare for the future (Learning & Guha-Sapir, 2013).

Frontline workers, defined as employees within essential industries who must physically show up to their jobs, have been shown to be especially at risk for mental health concerns following a disaster (Lowe et al., 2016; Lowe et al., 2019). Of these groups, home-based care providers (HBCP) are particularly at risk for mental health challenges in high stress environments such as disasters (Nukui et al., 2018). However, research on strategies to address the mental health needs of these groups during a disaster remains scant (Lowe et al., 2016; Nukui et al., 2018; Stangeland, 2010).

One avenue to better prepare HBCP for future disasters is to learn from providers’ own experiences. This study focused on HBCP, a group with essential expertise due to their public health training and intimate knowledge of the communities they serve. HBCP deliver vital community and in-home health care including patient and safety assessments, skilled care and treatment, education, infection control, and social support (National Association for Home Care and Hospice, 2008). They have a deep understanding of their patients’ home environment, medical needs, resources, and limitations, often with relationships forged over months or years (Wyte-Lake et al., 2016). These home-based care health care services are crucial to homebound older adults with multiple comorbidities. Annual home health care visit frequency increases with patient age, and the majority of individuals receiving home health care services are 65 or older with multiple chronic medical conditions (Federal Interagency Forum on Aging-Related Statistics, 2020; Gerteis et al., 2014; Harris-Kojetin et al., 2019).

Home-based care is intended to continue throughout a disaster, as caregivers maintain close contact with their clients regardless of their location (Anonymized for Review #1, Horowitz & Iwashyna, 2020). Strategies are needed to better prepare HBCP to address their own mental health needs, as well as those of their clients, during a disaster. Therefore the purpose of this study was to explore the existing knowledge gap around mental health and HBCP in the context of disaster using two hurricanes: Hurricane Harvey and Hurricane Irma. Hurricane Harvey was one of the strongest hurricanes to affect coastal Texas in recent years. Hurricane Harvey made landfall in Texas on August 25^th, 2017 dropping 33 trillion gallons of rain over the greater Houston, Texas area (Nukui et al., 2018). Soon after, the category 4 Hurricane Irma made landfall in Florida on September 10^th, 2017. It is estimated that the costs of the two storms total $290 billion (National Centers for Environmental Information, 2022).

Methods

This descriptive, qualitative study was part of a larger study of home-based care and disaster. Institutional review board approval was received [taken out for review]. This study adhered to consolidated criteria for reporting qualitative research guidelines.

Study Sample and Recruitment

The study sample included home health care agencies located in areas affected by Hurricanes Irma and Harvey. Participant inclusion criteria included English speaking, registered providers that provided care in a home-based setting during either of these hurricanes. The definition of home-based setting included community-based residences such as houses and apartment complexes but not institutional settings such as skilled nursing facilities or assisted living facilities.

The criteria for county inclusion were derived from counties with Federal Emergency Management Agency (FEMA) disaster declarations for these two hurricanes and further narrowed to those that also received Individual Assistance funding. A priority list of home health care agencies was generated by using open-source FEMA data, as well as race/ethnicity and socioeconomic characteristics by county. Counties with higher statistics of residents who describe themselves as Black, Hispanic, Asian, and “other” were also considered priority. This was done in order to learn from the experiences of HBCP working in counties with historically underserved patient populations. Priority was also given to counties with a median household income closest to the US Department of Health and Human Services Federal Poverty Guidelines, which were $61,372 in 2017.

Enrollment

Home health care agencies meeting study criteria discussed above were contacted by telephone, using a priority calling list of agencies based on criteria stated above. Two trained research assistants (LK, SD), both of whom have a background in research and health care, contacted each agency. After a fifth unanswered call or request for a call back, the agency was removed from the active calling list. Out of 164 agencies called, focus groups were held with a convenience sample of participants from five agencies.

Data Collection

Five in-person focus groups with a total of 25 participants were held in the two disaster-affected locations: Southern Florida (Hurricane Irma, September 2017) and the greater Houston area (Hurricane Harvey, August 2017). The focus groups took place in January, October, and November of 2019. The groups were moderated by the principal investigator who has doctoral level training in qualitative research methods (SB) and a trained research assistant (LK) as the secondary moderator. The secondary moderator was responsible for the audio recording, consent and incentive documents, and note taking. The focus groups lasted approximately 60 minutes, starting with an introduction to promote a comfortable environment. Written informed consent was obtained. The groups were then conducted in a semi-structured fashion with open discussion from questions and prompts. Participants received a $50 gift card as a compensation for their time and expertise. Study rigor was supported by use of the same semi-structured interview guide across all focus groups, use of a moderator with a background in nursing who was familiar with the research problem and topics of discussion, and selection of moderator who was not in a position of authority over focus group participants (Loeb et al., 2006; Morrison & Peoples, 1999; Prince & Davies, 2001; Smithson, 2000; Stewart et al., 2007).

Data Analysis

Once the focus groups were completed, the process of coding and analysis began. The focus group conversations were digitally recorded. These audio recordings were sent to a professional transcription service through a secured platform. Identifying information, such as facility, participant, clinician, or family member names, was removed from each transcript.

Data were analyzed using an abductive analytic approach (Timmermans & Tavory, 2012). This method decreases the likelihood of bias by combining inductive and deductive approaches to allow for deliberate examination of a range of explanations. The Social Ecological Model (Bronfenbrenner, 1981) and the Disaster Management Cycle (Neal, 1997) provided theoretical guidance for data analysis. The Social Ecological Model is a framework that examines influences on the health of individuals at interpersonal, community, societal, and policy levels. The Disaster Life Cycle provides a framework for effective interventions to address disasters’ effects through four phases: preparedness, mitigation, response, and recovery. Two trained research assistants (LK, SD), each of whom has a background in research and health care, individually read the transcriptions and developed codes informed by both frameworks. Forty-nine codes were initially developed. The codes were refined into themes that represent the over-arching concepts extracted from the data. Study rigor was supported by the use of a code book, a detailed audit trail, and weekly meetings between members of the coding team (LK, SD, and SAB) to review and arbitrate coding differences.

Results

Demographics

A total of five focus groups were conducted, each with a total of between two and six participants. A total of 25 participants completed focus groups. Participants reported having worked in their profession for between 3.5 and 39 years (mean 16.5 years). Table 1 summarizes participant characteristics.

Table 1.

Participant characteristics

Characteristic	n (%)
Male gender	3 (12)
Age
18–30	3 (12)
31–45	8 (32)
46–60	10 (40)
61–75	1 (4)
No response	3 (12)
Race
Black	1 (4)
White/Caucasian	21 (84)
Hispanic/Latinx	3 (12)
Asian	0 (0)
Role on care team*
Physical Therapist	1 (4)
Registered nurse	13 (52)
Licensed vocational nurse	4 (16)
Administrator	5 (20)
No response	5 (20)
Length of time in occupation (years)
0–5	1 (4)
6–10	8 (32)
11–20	5 (20)
21 +	7 (28)
No response	4 (16)
Highest level of education
Diploma/certificate (i.e. LVN)	4 (16)
Associates’ degree	5 (20)
Bachelor’s degree	10 (40)
Master’s degree	1 (4)
Doctorate	1 (4)
No response	4 (16)

^*May report more than one role

Study Themes

Four major themes emerged. The themes were (a) providers’ disaster-related mental health needs; (b) HBCP resilience; (c) tension between caring for self and family and caring for patients; (d) adapting to meet patients’ holistic needs during and after disaster. Each theme is described below.

Theme 1: Providers’ disaster-related mental health needs

Participants reported feelings of helplessness as a result of limitations experienced while attempting to meet patient needs during and immediately after the hurricanes.

It’s frustrating because you’re leaving the home of this person knowing that they’re in need of something and you don’t have a clue on how to help them to get it. As nurses we want to take care of our people. E4, EN

They described being under an enormous amount of stress, as they tried to juggle their patients’ needs with the hurricanes’ impacts on their own personal lives. HBCP described how this stress was amplified by the obligation to concurrently meet their clients’ mental health care needs. Participants expressed a desire to better support their clients, who they observed experiencing feelings of depression and defeat. The cumulative effects of these stressors, including the trauma of seeing the hurricanes’ devastating impact on their patients, is described in the following two quotes:

I didn’t realize how emotional it was going to be to see those patients after they’ve lost lots of things. E5, EJ

She just started bawling and said the river took it and it was terrible. It was truly, truly terrible because I was helpless to get her back her home or any of those kinds of things. B2, BB

Participants reported feeling overwhelmed while trying to support their fellow HBCPs’ needs:

I felt like I couldn’t rest …I felt like I spent all my time messaging my staff, okay, this road is closed, this road is closed. This is what we need to do. What’s going on with your folks? B4, BB

Theme 2: Resilience of home-based care providers

HBCP described actions they took to cope effectively while providing care throughout the hurricanes. They described how they struggled to avoid letting the adversities of the storm prevent them from helping their patients.

Mostly what I saw was just the discomfort of not having water and power […] It was hard to see the wound care because they really didn’t have even […] candles or anything in their home. E4, EC

Being gone from 8:30 to 6:00 or 6:30 at night […] a way longer day than you normally would but […] making sure that you had these emergency checks to see if these patients are home and they’re okay. A4, AP

Lack of supplies and limited resources were an ongoing issue, but participants described solutions they used to meet patient needs:

I know we lost a lot of money in wound cares because before the storm we were just taking stuff out the supply closet and I had bags in my car and I was going to that patient dropping off supplies, that patient drop off supplies. B3, BO

Theme 3: Tension between caring for self, family, and patients

Participants described the stress they experienced as they tried to support their own families’ needs while simultaneously caring for patients. They described the challenges of juggling competing priorities and worrying about family members as well as their patients. Additionally, patients continued to require home-based care services regardless of the hurricanes’ presence. As a result, HBCPs described how they needed to continue seeing patients as soon as possible after the storm.

I think it was stressful for a lot of the nurses […] a lot of the nurses had stuff at their houses that got messed up and ruined too. So you’re working and trying to make sure everything’s good at home and make sure patients are good. E6, EO

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…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, BB

We had one staff member who lost her home and everything in it. We had several people who had family members who were impacted, but we still are coming to work as we had to come to work. B4, BB

Participants stressed the importance of having a personal hurricane preparedness plan that included provisions for the care of children and other dependent family members in order to facilitate continued attendance to work.

You need to understand your own personal plan and you need to understand who’s responsible for your family […] So I think one thing that I would hope we can do better is get our own personal plans locked down very clearly so that we can focus on what we need to do with patients. B3, BK

Theme 4: Adapting care to meet holistic needs of the patient after a disaster

HBCP reported feeling a sense of responsibility to support their patient’s health and wellbeing. They described going outside the usual scope of their patient care duties during and after the hurricanes. They worked longer hours, doing things that they would not normally do in order to take care of their patients, understanding that this was necessary in order to meet functional needs (e.g., using community connections to obtain a generator). They adapted to needs in a post-disaster environment, stepping into roles that were temporarily left vacant due to disaster disruptions. However, they also described the discomfort and lack of preparation they felt when stepping outside of normal care roles:

So then when you see the patients, you’re there to deal with their medical concerns […] but you’re also having to deal with all the other stuff because […] you don’t want to just leave them there with no type of solution or help. E5, EN

[Patients] were traumatized and so when we would see them, you’d have to be kind of, okay, let me put on a different hat […] My psychological hat or whatever, because […] mentally the patient was different and so our visits were different that way too. E5, EJ

Participants reported how they felt a strong duty to provide emotional support to their patients in the hurricanes’ aftermath. HBCP described how they perceived empathetic listening practices to be a valuable part of the post-hurricane plan of care for their patients.

With [my patient], just you know, be there for moral support as well […] and listening to him and being able to you know, talk about how much he lost and being there basically for moral support. A4, AG

In addition to functioning more like mental health providers than home health care providers, participants described other situations where they went beyond the usual scope of home-based care services. For example, one participant reported securing meals for their patient from disaster relief services.

[I]t was not something that we would normally do but I brought one of our patients to the Red Cross […] to get a bunch of food and bring back for him and his partner […] I couldn’t leave them there […] without food and water. A4, AC

Discussion

This study examined HBCPs’ experiences with patient and provider mental health needs in the context of hurricane disasters. HBCP spoke about the increased responsibility of providing mental health care while working with a disaster-affected population. The providers described being under tremendous stress, working long hours, doing tasks outside of their normal patient care routines, and balancing the needs of patients and their own families. Participants frequently reported feeling underprepared to deliver the kind of care required of them during and after the hurricanes. Many of the providers were dealing with personal issues, such as damage to their own homes and families as a result of the hurricanes. Participants also described challenges associated with trying to manage patients’ responses to hurricane-related stressors. Many HBCP seemed to be internalizing their patients’ stress, while others reported feeling helpless as they tried to provide care in the hurricanes’ aftermath.

This study may be one of the first to examine the mental health needs of HBCP who have provided care during a disaster. While a substantial body of literature exists describing the mental health impacts of disasters on several populations (Cherry et al., 2017; Fergusson et al., 2014; Ruggiero et al., 2015; McFarlane, 1986; Parker et al., 2016), there is far less literature describing the effects of disasters on mental health in the home-based care setting. HBCP in our study described feelings of helplessness and stressful experiences, which have been shown in the literature to contribute to development of depression and anxiety (Hoffer & Buie, 2016). The significant stress HBCP face during disasters may also lead to PTSD, major depression, and other severe psychological illnesses (Turner, 2015).

This study indicates that HBCP may be in need of mental health care resources to address disaster-related workplace stressors as well as resources in the form of formal training to provide mental health care to their patients. Frequently, large health systems have resources available, such as medical social workers and employee assistance programs staffed with occupational social workers, to support patients, families, and providers (Sabbath et al., 2018). However, home-based care agencies are often small, privately owned facilities operating in rural areas, which forces HBCP to address patient and provider mental health stressors on their own with minimal support. Taken together with our results, this suggests that HBCP may benefit from increased mental health training in the context of disasters. Due to the increased responsibility and stress disasters seem to be placing on HBCP, we suggest that home health agencies offer mental health support to their workers.

Implications

We suggest further quantitative study of the effects of disasters on HBCPs’ mental health to guide future policy decisions regarding the allocation and accessibility of mental health care resources for health care workers providing care in the home setting during disasters. Given the documented risks that disasters, such as hurricanes, pose to mental health, we propose further study of potential mental health screening and treatment interventions that may benefit HBCP in the context of disaster (Shultz & Galea, 2017). The presence of resilience, or processes of adapting well to adversity, trauma, tragedy, threats, or significant sources of stress (American Psychological Association, 2022), in providers is a protective factor from negative mental health impacts, and resilience can be increased by training, preparedness, managerial practices, and post-disaster counseling (Turner, 2015). An opportunity exists for home care agencies to consider ways to increase provider resilience, which may help to support HBCPs’ mental health during the post-disaster recovery process. One example might be personal wellness check-in calls to HBCP in the aftermath of a disaster.

We also suggest further study of potential strategies to reduce mental health stigma and burnout among HBCP providing care during disasters. The COVID-19 pandemic has highlighted burnout as a critical issue in the nursing profession (National Academy of Medicine, 2021; National Academies of Sciences, 2019). HBCP in our study described stressful situations they encountered while providing care in the home during and after major hurricanes that may lead to health care provider burnout. However, challenges still exist surrounding health care providers’ willingness to speak out about mental health care needs. Although we have suggested initiatives that may improve mental health wellness among HBCP, reducing occupational stigma around receiving mental health care is imperative.

In addition to identifying a potential need for better mental health supports for HBCP working during and after disasters, our study highlighted the need for mental health care strategies HBCP could use in the care of their patients. Although we described examples of providers who displayed adaptability in order to meet patient needs in the context of major hurricanes, HBCP still need additional support in the form of formal training on mental health care. Trainings using case identification and simple intervention skills, such as brief interventions, may be beneficial to HBCP attempting to provide mental health support to patients during and after disasters (Sundram et al., 2008). Other examples include psychologist first aid containing the “five essential elements: safety, calming, connectedness, self-efficacy, and hope” (North & Pfefferbaum, 2013; Shultz & Forbes, 2014) and critical incident stress management (CISM) (Everly et al., 2002). To facilitate broader uptake and understanding of CISM among HBCP, it may be beneficial to require a one-time CISM course as part of HBCP continuing education requirements.

Our initial research indicates that home-based care agencies may benefit from the inclusion of a mental health component in their emergency preparedness plan (Emergency Nurses Association, n.d.). These mental health-specific resources may assist HBCP in the early detection of patients with mental health concerns, although future research is needed to determine the optimal approach. Standardized screening tools can be easily administered, provide valuable insight into an individual’s risk for psychological problems, and facilitate referral to a mental health provider (North & Pfefferbaum, 2013; McFarlane, 1986). Other resources that may be beneficial to include in an emergency preparedness plan include existing resources such as the Substance Abuse and Mental Health Service’s Administration Disaster Mobile App (SAMHSA, 2022).

Limitations and future research

This study included a total of 25 HBCP participants drawn from two disaster affected locations. Participants shared insight into their experiences providing care after hurricanes; however, the limited sample size makes it difficult to generalize our findings beyond communities with similar demographics and disaster types. Additionally, most of our participants were white women, excluding valuable insights from HBCP of color and those identifying as men. Future studies would benefit from a focus on the perspectives of HBCP from historically marginalized groups including Black, Indigenous, and other people of color to provide diverse views on health care delivery in disaster settings. Because spirituality can impact individuals’ decision-making processes and coping mechanisms during major stressors, we were surprised that themes related to spirituality were not identified in our analysis and believe that this represents an area worthy of future study in disaster settings. Finally, there is a risk for recall and recency bias in our data, as data collection occurred two years after the hurricanes of interest. However, recruitment of health care providers during active disasters remains an important methodological challenge. As our data show, health care personnel are often focused on the tension between providing high quality patient care and maintaining the safety of their homes and families, which limits time available for participation in research. For this reason, we accept the limitations associated with our study’s time frame and instead focus on the insights gained from in-depth focus groups with HBCP, who may not have been able give so much of their time in the immediate aftermath of both hurricanes.

Conclusion

As the aging population in the U.S. rapidly expands, an increased demand for home-based care and HBCP is expected. (Wyte-Lake et al., 2016; Wyte-Lake et al., 2019). In this paper we call for increased attention to HBCP and their mental health and well-being after disasters. Ensuring mental health care for providers to reduce lasting mental health complications and burnout is essential to maintain an effective home care workforce. Additionally, promoting mental health care interventions for patients is an essential aspect of nursing care, and critical when working with a disaster-affected population.

What this paper adds:

• Home-based care providers reported difficulty processing the trauma their patients experienced during and after Hurricanes Irma and Harvey.

• Continuing to care for patients while simultaneously addressing their own personal hurricane-related problems was a source of stress for home-based care providers during Hurricanes Irma and Harvey.

• Home-based care providers described challenges they experienced as the focus of patient care needs shifted from physical health to mental health in the post-hurricane period.

Applications of study findings:

• Further study is warranted to characterize home-based care providers’ mental health needs in the context of hurricanes and other disasters.

• Home-based care providers may benefit from formal mental health supports while providing care in the context of hurricanes.

• Home-based care providers may benefit from additional training in basic mental health care to better meet patients’ mental health needs after hurricanes.