key: cord-0732158-2ot4z9z0
authors: Figueiredo, Carolina de S.; Giacomin, Karla C.; Gual, Ramon F.; de Almeida, Simone C.; Assis, Marcella G.
title: Death and Other Losses in the COVID-19 Pandemic in Long-Term Care Facilities for Older Adults in the Perception of Occupational Therapists: A Qualitative Study
date: 2022-03-31
journal: Omega (Westport)
DOI: 10.1177/00302228221086169
sha: ece5383e762ed633c0d6c814cc2792fddf0090ec
doc_id: 732158
cord_uid: 2ot4z9z0

Long-term care facilities for older adults (LTCFs) were directly affected by the COVID-19 pandemic. This study aimed to discuss the perceptions of occupational therapists about deaths and other losses in LTCFs during the pandemic. This qualitative study is anchored in social phenomenology, and conducted in-depth interviews with eight occupational therapists who worked in LTCFs. Thus, two themes were generated after the Thematic Analyses: “The proximity of death” and “Losses associated with living and dying in a LTCF.” In the first theme, the interviewees addressed the feeling of imminent death in the daily life of the LTCF, and feelings related to their own death, that of their family members and other older adults. In the second, the professionals highlighted three groups of losses: social, functional, and psychological/cognitive. These results highlighted the challenges faced by occupational therapists and can contribute to improve behavior and care for institutionalized older adults during the pandemic.

The COVID-19 pandemic has impacted the lives of people around the world, resulting in high mortality, especially in the older adult population residing in long-term care facilities (LTCFs). Data from European countries suggest that institutionalized older adults accounted for between 42% and 57% of all deaths related to COVID-19 (Comas-Herrera & Zalakain, 2020) . In Canada, 66% of deaths from COVID-19 occurred in older adult residents of LTCFs (Canadian Institute for Health Information, 2021) . This rate is 25% in the United States, and in some states it reached 50% (Grabowski & Mor, 2020) . LTCF residents are more vulnerable to contamination, as they live in a shared environment and may present a more fragile health condition and multiple comorbidities (Chen et al., 2020; Edelman et al., 2020; Ouslander & Grabowski, 2020) . In addition, many team members work in more than one facility, which is a potential source of virus spread (McMichael et al., 2020; Ouslander & Grabowski, 2020) . These factors contribute to the high transmission rate of COVID-19 in these facilities, which can quickly contaminate residents and employees (Chen et al., 2020; Edelman et al., 2020) .

LTCFs were directly affected in the pandemic context (Sepulveda et al., 2020) and the care of institutionalized older adults became even more challenging given the series of preventive measures needed to try to contain the contamination. Among these measures, the following stand out: mandatory and continuous use of face masks and other personal protective equipment (PPE) by employees, use of 70% alcohol and constant hand washing of employees and older adults, and suspension of visits and group activities of residents (Edelman et al., 2020) . Thus, the pandemic impacted the lives and routines of older adults and employees of the LTCFs (Edelman et al., 2020; Grabowski & Mor, 2020; Ouslander & Grabowski, 2020) . Furthermore, the pandemic led to unprecedented fear and stress among employees and residents (Edelman et al., 2020) .

Among professionals, occupational therapists work in structuring the residents' routine with an emphasis on occupational performance and adapting to the institutional context. In addition, occupational therapists assist institutionalized older adults in the final moments of life, focusing on the performance of significant activities (American Occupational Therapy Association, 2016; Hammill et al., 2019) . Death is seen as a taboo topic by occupational therapists (Figueiredo et al., 2021) . As such, the approaches occupational therapists should take towards dying patients in LTCFs have not been discussed (Bye, 1998) . Many institutions avoid approaching death as a natural step in the life course (Marcella & Kelley, 2015; Treggalles & Lowrie, 2018) and do not provide support for occupational therapists to deal with this issue .

In the context of the pandemic, the role of occupational therapists and coping with death in LTCFs are even more challenging. Professionals are faced with death daily. Thus, occupational therapists have been directly impacted by the consequences of the Covid-19 pandemic on the performance of individual occupations, including changes in activities of daily living, communication, mobility, social interaction, and mental health, among others (Hoel et al., 2021) . Therefore, occupational therapists should use new skills in problem solving in recognizing that this is a challenging time for the profession. Among the challenges to be faced are the use of technology in remote care and virtual visits to the older adult residents (Brown, 2021; Edelman et al., 2020) , the continuous use of PPE (Edelman et al., 2020) , in addition to loss management in this context of the pandemic. However, there is no in-depth discussion of how professionals, including occupational therapists, have dealt with deaths and other losses due to COVID-19. As this is an unprecedented situation with great impact on LTCFs, it is necessary to promote discussion and knowledge on this topic which can guide behavior and support the health team in finding strategies to assist in providing care for institutionalized older adults. Therefore, the aim of this study was to discuss the perceptions of occupational therapists about deaths and other losses in LTCFs during the COVID-19 pandemic.

This is a study with a qualitative approach anchored in social phenomenology (Schutz, 1972) . This framework makes it possible to deepen the experiences of individuals, especially when the focus of the study is associated with issues of human existence (Schutz, 1972 

Participants were male and female Brazilian occupational therapists from the metropolitan area of the city of Belo Horizonte, Minas Gerais state, who had at least 6 months of experience working in a LTCF. The sample consisted of professionals who participated in an umbrella study on the theme of death and dying in LTCFs (Figueiredo et al., 2021) . The recruitment process associated Snowball and convenience procedures. The first two occupational therapists invited to participate in this study were located through the list of long-term care facilities registered by the city of Belo Horizonte. Occupational therapists initially participated in focus groups, and in a second stage of the study they were invited to participate in in-depth interviews. This article included the results of these interviews.

Data collection was carried out through in-depth individual interviews. The interviews took place between November 2020 and February 2021, in a quiet, reserved and easily accessible location. Some prevention measures against COVID-19 were adopted as the interviews were conducted in person: the interview environment was spacious and airy, there was a distance of at least 2 m between the researcher and the interviewee, in addition to the use of face masks and availability of 70% alcohol for hand hygiene.

A semi-structured interview script previously formulated by the authors was used and a pilot test was carried out to check the adequacy of the questions before it was used. After this pilot study, the authors had a meeting to make small adjustments, such as the replacement of words and terms, in addition to the order of some questions, aiming to increase the clarity of the questions and make the interview more fluid. The final script consisted of seven questions, with the first being about death and dying in LTCFs, and the others dealing with this theme considering the Covid-19 pandemic. Thus, respondents were asked about what changes were observed in organizing the older adults' routines and in the work dynamics of professionals in LTCFs and what were the feelings experienced by them during the COVID-19 pandemic.

The interviews were all carried out by one of the authors (who has experience in this type of collection) to ensure uniformity of data. The interviews were recorded using two recorders strategically placed in the environment. On the collection day, the researcher explained the study objectives, clarified possible doubts and tried to make the participants feel free to provide answers.

The interviews were conducted in Portuguese, the official language of Brazil. They were later transcribed in full and reviewed by the authors to ensure that all information was included, and subsequently translated into English. All researchers have experience in conducting qualitative studies. Periodic meetings were documented and held between researchers to clarify doubts about data collection and analysis, and discuss and adjust methodological aspects. Therefore, the researchers were concerned with maintaining methodological rigor throughout the research (Graneheim & Lundman, 2004; Rose & Johnson, 2020; Shenton, 2004 ).

The Thematic Analysis proposed by Braun and Clarke (2006) was used by the researchers, following these steps: (1) data familiarization by complete readings and rereadings of the material; (2) determining and comparing codes; (3) generating the first themes; (4) reviewing the themes according to the research objectives; (5) defining the names of the themes; and (6) writing and contextualizing the analysis with the literature (Braun & Clarke, 2006) . Nine online meetings between researchers were held to discuss and define the final themes. After an extensive data analysis, the authors concluded that the research objective was achieved, with no need to proceed with further data collection.

Of the 12 occupational therapists who participated in the focus groups, eight were interviewed in this study. Six of the participants were women. The average age of the participants was 36.4 (28-52) years, with an average training time in occupational therapy of 10.2 years and 9.8 years of experience in LTCFs. Six respondents had a specialization in Gerontology or Older Adult Health, and two worked in non-profit institutions.

After analyzing the data, two themes were generated: "The proximity of death" and "Losses associated with living and dying in a LTCF".

Occupational therapists reported that death became more present in the daily life of the LTCFs with the COVID-19 pandemic, and raised several feelings. In order to better illustrate this theme, it was divided into two parts: "Imminent death" and "Feelings in the face of pandemic and death." Imminent Death. Respondents reported that the feeling of proximity to death began to permeate the daily life of the LTCFs in a very intense and distressing way. They reported that death has become a more real possibility in relation to themselves, their families and the older adults at the LTCFs, as illustrated in the following report:

"And in relation to death, we see that suddenly a virus can interrupt everything... we feel closer to death. I felt it. Both mine [death] and that of other people, my parents, the older adults..." (Participant 6) They also reported the fear of causing many deaths in the institution by transmitting the virus to the older adults. The following excerpts illustrate these insights:

"Some people close to me caught COVID and they became very bad and the fear of infecting me and others getting it came and how it would be...." (Participant 8)

"But I confess that, before I had COVID, I was in panic of being a carrier of a virus inside a LTCF and suddenly a lot of older adults dying. It's an anguish I've lived through. I confess at times it was even paralyzing (...)." (Participant 4) Then, an interviewee expressed the moment of tension and sadness of the professionals while working at the LTCF due to the possibility of contaminating the older adults, and reported that they had interrupted their activities:

"I imagined that as soon as someone in the institution had COVID, most would have it and that they [older adults] would die. I imagined mass passing, mass death. (...). In the beginning, people went to work crying. (...) I decided to stop going to the LTCF, but I saw all my colleagues while I went, and they continued to work very sad, very tense, it was no longer a good time (...), so, our boss said that the best thing would be for me to stay away from my activities at the LTCF." (Participant 7)

Feelings in Facing the Pandemic and Death. The feelings reported by occupational therapists in relation to the COVID-19 pandemic reflect the fear of the unknown. Respondents also portray impotence and anguish in facing the unpredictability of a new disease, which puts everyone's lives at risk. Pain was also pointed out by the participants in view of the possibility of death occurring without a goodbye. The feelings regarding the threatening pandemic and death are expressed in the following report: "(...) it's a very different context, nobody knows how to deal with it. It's a feeling of fear, of anguish because I can be contaminated and contaminate those around me, from my family to the places where I work... and I still have this feeling of fear, of anguish. Fear of the unknown, I don't know what that is... what might come next... (pause). (...) I carry anxiety, one of pain, because due to the context, it can be a farewell that won't happen." (Participant 2) However, the occupational therapists interviewed narrated various feelings about death, that of their family members and older adults in the LTCFs, as well as their fear and anguish from Covid-19.

In addition to the perception of the proximity to death, occupational therapists reported losses suffered by institutionalized older adults during the Covid-19 pandemic, as explained by this interviewee:

"The pandemic had a very big negative impact on older adults, they had huge losses (...). It has been difficult days, very difficult for the older adults." (Participant 3) Losses reported by respondents were divided into three groups to organize the results: social, functional and cognitive/psychological. According to occupational therapists, these losses portrayed the gradual death and living of the older adults. Respondents reported their experiences using virtual technologies in an attempt to reduce the social isolation of the older adults: "(...) they [the older adults] move between wanting to be close to family members and not being able to receive visits. (...) So there is a lack of visiting with family members. (...) There is technology, ways for you to have a virtual contact or to view through the gate of the LTCF, but there is no physical touching, there is no close contact." (Participant 3) Another social loss highlighted was the reduction of collective activities:

"The older adults began to understand that no one entered the LTCF. The house was getting emptier, there were no more activities, the older adults were getting quieter, more discouraged too (...). No more bingo, gymnastics, conversation circles, birthday parties, family parties. So there won't be anything..." (Participant 5) Finally, the loss of the possibility of a farewell when a death occurs in the LTCF and a perception of erasure of the older adult who died were highlighted in the following reports:

"Some older adults made this move of wanting a decent burial, a decent funeral for their colleague. At this moment of the pandemic, they are suffering a lot, because they cannot say goodbye to their friend." (Participant 4) "The feeling I have in the institution is that when an older person dies, it's as if they were erased." (Participant1) Functional Losses. Functional losses were related to the change in routine, the reduction in the care provided by professionals from the LTCF team and the isolation of suspected or contaminated older adults.

The respondent below pointed out the change in routine:

"They [older adults] felt more the impact of the change in their routine, in their daily lives, in the care we were used to doing and could no longer do (...)." (Participant 1)

One occupational therapist emphasized the need to maintain the offer of activities. They also highlighted the difficulty of the older adults in dealing with technology and the reduction in the professional staff in the institution:

"I was very concerned in this sense of trying to keep activities to a minimum, of possible options. Without a doubt, it was one of the populations that was most affected. As adults we had to deal with the chaos of managing a life at home, working from within the house, taking care of children. We dealt with the chaos of excess function. Older adults deal with the lack of function, no function, everything having been taken away and not having the technology in their favor. The older adults are not very skilled with technology, with smartphones. I don't think I can measure it at the LTCF, I can think of some things in this sense of the loss of the older adults being there without a function, without activity, without monitoring of a larger team." (Participant 8) Functional loss was also identified after the isolation of older adults suspected of having Covid-19 or being contaminated, as shown in the following report:

"I realize that the isolation of one older adult with COVID, who was contaminated, he came back worse to the group. He was an older adult who was extremely participative, accessible, well-disposed, he needed to be away for 14 days and when he came back... most of these older adults came back worse than they were in the psychological and functional sphere." (Participant 2)

Psychological and cognitive losses were associated with social isolation and a difficulty for the older adults to understand the context of the pandemic. "I think it had a very large impact of psychological, emotional and mental health involvement. Very big indeed. So those with lucidity, even those without full lucidity, you notice that there was a more accentuated decline in this period... of the lack of contact Faced with so many losses, it was necessary to get involved in facing them and reinvent themselves, as this interviewee explains:

"Struggling to get tests, guiding everyone at the LTCF, helping employees who were discouraged and lost". (Participant 5)

Phenomenology helped researchers to understand the experiences of occupational therapists in LTCFs, highlighting the negative repercussions of the Covid-19 Pandemic in the daily lives of respondents and the varied losses suffered by the older adults. Death has become a closer and more real possibility in personal and professional life during the pandemic. Accepting death, especially mortality itself, can be difficult for individuals in Western societies (Indacochea-Cáceda et al., 2021) and the pandemic has forced this confrontation. Thus, reflection on the acceptance of death itself and human frailty is essential for health professionals to elaborate their feelings in this moment of the pandemic.

The first theme, "The proximity of death" evidenced the feelings of occupational therapists, such as fear, anguish and concern, which were related to the pandemic and the greater proximity of death. Corroborating this result, the study by Menzies and Menzies (2020) also highlighted that anxiety is more present in people's daily lives in the Covid-19 pandemic, with death in constant evidence (Menzies & Menzies, 2020) . The pandemic has guided the need for urgent discussion on the finitude and experience of mourning for losses, not only of the people attended, but also of the occupational therapists themselves. Reflecting on one's own mortality and human frailties in personal and professional life is an issue that is always challenging and often hidden by the health team. In a study that addressed the experience of grief among occupational therapists who work in palliative care, Treggalles and Lowrie (2018) emphasized the relevance of a reflective practice to legitimize new ways of thinking and for professional improvement.

In addition, occupational therapists reported fear of the possibility of contamination and transmission of COVID-19. A study by Kumar et al. (2020) pointed out that the factors that were most associated with fear of health professionals in the pandemic Figueiredo et al. included being infected (84.8%), being quarantined (69.6%), not receiving medical treatment (62%), losing their lives (56.8%), and infecting family members (94.2%) (Kumar et al., 2020) . This study highlighted the fear occupational therapists had of becoming infected, of losing their lives and of infecting their families. However, they did not mention feelings about being quarantined and about the lack of medical care. It is noteworthy that the pandemic was under control in the municipality during the period in which the interviews were conducted, and there was no collapse of the health system, which may explain the absence of these factors in the interviewees' reports.

Feelings of fear, anguish and concern persisted in the interviewees' reports regarding death of older adults, added to stress and the feeling of despair. These feelings were associated with the possibility of death on a large scale in institutions, as there was a high risk that the coronavirus will spread quickly once detected (Simard & Volicer, 2020) . Furthermore, older adults in LTCFs were more affected than any other population: 19-72% of deaths from coronaviruses were at these institutions (Thompson et al., 2020) .

In addition to the feelings mentioned above regarding the pandemic, the occupational therapists interviewed reported pain and anxiety. The fact that coronavirus is an unknown virus and its unpredictability may have exacerbated these feelings. People were asking "How and when will this end?" (Kumar et al., 2020) . The lack of PPE, fatigue from the continuous use of this equipment, fear of becoming contaminated, in addition to the conflict between following preventive measures and meeting the needs of patients can impact the mental health of health professionals (Giorgi et al., 2020) .

In this context, many health professionals opted for self-isolation as a way to prevent coronavirus contamination (Diolaiuti et al., 2021) . In the interviews in the present study, some occupational therapists reported withdrawal from their activities due to guidance from the LTCF managers or of their own volition in an attempt to stop the transmission. Therefore, some LTCF employees were leaving their functions, with a decrease in the workforce in the care of institutionalized older adults (UNI Global Union, 2021) . In this sense, LTCF professionals, including occupational therapists, have been directly affected by the COVID-19 pandemic and had to increase efforts in their areas of expertise (Blanco-Donoso et al., 2021) .

Another perception of occupational therapists was related to the impossibility of saying goodbye when a LTCF resident dies. This "disappearance" of the deceased resident has compromised the rituals in mourning. People bereaved by COVID-19 had higher levels of grief compared to those bereaved by natural deaths (Eisma et al., 2021) . Rituals such as wakes and burials were restricted in many countries from the pandemic, and isolation protocols limited the social support available at the time of death (Diolaiuti et al., 2021) .

In the second theme, "Losses associated with living and dying in a LTCF," occupational therapists reported other losses (social, functional and psychological/ cognitive) suffered by LTCF residents during the pandemic. The interviewees' reports indicated that these losses would be a living death. This death in life is associated with social death, which may precede biological death. In the process of social death, older adults experience isolation, reduced interaction with the environment, in addition to reducing their roles in society (Aredes et al., 2018; Borgstrom, 2017; Králová, 2015) . It is noteworthy that older adults are one of the most vulnerable groups to social death (Ghane et al., 2021) and isolation in the pandemic has a direct impact on the well-being of these individuals (Chu et al., 2020) . Thus, the deprivation of experiences imposed by social isolation can negatively impact the quality of life of people at the end of life, in addition to the fact that dying alone has become something frequent during the pandemic (Chu et al., 2020) . Social losses in the present study were emphasized by occupational therapists and had a great impact on the lives of institutionalized older adults. As a result, the interviewees perceived the older adults as being more discouraged, quiet, without stimuli, sad and lonely. Thus, occupational therapists noted that social losses were directly associated with functional and psychological/cognitive losses.

Among the social losses, the participants highlighted a decrease in the relationship between the older adults and their families due to the prohibition of visits and departures from the institution. If, on the one hand, the suspension of visits was an essential prevention measure for containing COVID-19 in LTCFs, on the other hand, maintaining the older adults in social isolation for months seemed cruel for the older adults, employees and family members (Lynn, 2020) . Occupational therapists reported that visits to the LTCFs strengthened the older adult's social network and family ties, in addition to bringing movement in the institutions, collaborating to break a monotonous routine, so common in these spaces. Therefore, social distancing-a measure used to reduce the transmission of the virus in LTCFs-can have negative repercussions on the daily lives of individuals.

In addition to suspending visits, collective activities carried out among institutionalized older adults, including group meals, also needed to be avoided, which led the older adults being confined mainly to their dormitories (Edelman et al., 2020) . Respondents reported the suspension of various leisure activities such as bingo, conversation circles and parties. Leisure activities provide a social environment that can promote positive results in the well-being of the older adults, in addition to favoring maintaining and creating social bonds (Duncan et al., 2017) . Thus, the decrease in these activities was another loss suffered by institutionalized older adults during the pandemic.

Occupational therapists reported the challenge of using virtual technologies as a communication resource with the families of the older adults. Although the use of technology could reduce the impact of social isolation (Chu et al., 2020; Eghtesadi, 2020) by allowing them to have secure contact with their family, according to participants the older adults are not accustomed to using smartphones. Furthermore, many LTCFs do not have an adequate number of technological devices to share among the older adults, restricting access to family members (Chu et al., 2020) . Respondents reinforced that residents missed physical contact with family members. To provide this virtual contact, it should be ensured that glasses and hearing aids are available when necessary, increasing the communication capacity of the older adults (Edelman et al., 2020) .

Abrupt changes in routine due to the pandemic have a negative impact on individuals' lives (Ataide et al., 2021) . In the present study, the social impact resulting from changes in routine, the decrease in care provided by health professionals and the isolation of older adults suspected of having or being contaminated by COVID-19 were related by occupational therapists to a decrease in the functionality of residents. As the older adults spent more time in their rooms, they lost fitness, the risk of pressure injuries increased, and mobility was reduced (Edelman et al., 2020) . Furthermore, the older adults showed worsening in physical function and difficulty in performing activities of daily living after the acute phase of the COVID-19 infection. Damage to body structures and functions, such as weakness and myalgia, can limit the ability to perform basic and instrumental activities of daily living (Pizarro-Pennarolli et al., 2021) .

According to the occupational therapists in the present study, social isolation and difficulty in understanding the context of the pandemic were associated with psychological and cognitive losses in the older adults. Social isolation can have negative effects on the mood, cognition and quality of life of the older adults and LTCF employees (Ouslander & Grabowski, 2020) . In this sense, the interviewees emphasized that the reduced stimuli and loneliness could affect the mental health of older adults, aggravating depressive symptoms and cognitive alterations. The impact of the pandemic on the mental health of individuals is inevitable and the health system must prepare to face this reality (Galea et al., 2020) .

The occupational therapists in this study pointed out bringing more meaning to the lives of the older adults as a challenge, in addition to making them understand this new context of the pandemic. Older adults with dementia are particularly often unable to understand why their routines are altered, and a lack of visitors can trigger behavioral symptoms which are difficult to manage (Edelman et al., 2020) . Finally, the interviewees highlighted that despite the decrease in attendance, they focused more on carrying out individual and meaningful activities with the aim of positively impacting the routine and mood of the older adults. Therefore, the interviewees mentioned some strategies to increase older adults' functional independence, such as organizing and encouraging activities that they could perform independently in the LTCF, maintaining all preventive measures to Covid-19. In addition, they were concerned with orienting the older adults and employees about the context of the pandemic.

A limitation of this study is related to the possibility of some participants knowing the interviewer in advance. In an attempt to avoid coercion of the participants, the researcher made them feel free to accept or not the invitation when contacting them. In addition, the researcher reinforced the interviewees on the day of the interview that they could withdraw from participation at any time.

As this study used qualitative data collection and data analysis methods, data collection focused more on deepening the studied theme than on seeking representativeness of the sample. As described by Krefting (1991) , a criterion that underlies the rigor of qualitative studies is based on transferability and not on external validity (Krefting, 1991) . Thus, the researchers chose not to include the lack of generalization as a limitation.

The results of the present study showed that the pandemic directly affected occupational therapists and older adults in LTCFs. Because they are experiencing something unprecedented and unpredictable, these professionals experienced feelings related to death and the pandemic itself, with an emphasis on fear, concern and anguish revealed by the feeling of the omnipresence of death and a real possibility of loss of life. This study also made it possible to reflect on how the Covid-19 pandemic placed death at the forefront of the professional and personal lives of occupational therapists, imposing the need to reflect on human frailty and finitude itself.

In addition, the results showed that occupational therapists experience a dilemma: on the one hand, they recognize the need to maintain social isolation measures which are essential to prevent contagion and deaths in institutions; on the other, they need to deal with the losses suffered by the older adults resulting from these measures. This challenging context leads them to rethink their behavior and seek alternatives to offer them the best care during the pandemic, while striving to minimize its deleterious effects on the daily lives of institutionalized older adults.

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The authors would like to thank all the occupational therapists who made themselves available to participate in this study.

The first author contributed to the study design, data collection and analysis, and the writing of the article. The last author participated in the study design, data analysis and article writing. Other authors contributed to the data analysis and writing of the article.

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Carolina de S. Figueiredo  https://orcid.org/0000-0003-3969-4938