Abstract

This article aims to investigate the implications of grief among family members of COVID-19 victims; verify the prevalence of prolonged grief symptoms; and identify family members’ expectations regarding end-of-life care for their loved ones affected by COVID-19. Descriptive, cross-sectional research, with a quantitative-qualitative approach. Data collection was performed using an online questionnaire, guided by the PG-13 instrument. Descriptive and inferential statistics were applied. The results were presented descriptively and with the aid of tables. The study sample included 142 family members, mostly female, who presented emotional, physical, social, and financial implications as a result of grief. A prevalence of prolonged grief symptoms was observed in 11.4% of the mourners with more than six months and 29.6% of those with less than six months. Three thematic categories were identified: transparency in communicating the health situation, access to moments of farewell, and promotion of comfort in care actions. The symptoms of Prolonged Grief Disorder have a significant association with the degree of kinship. In final care, family members’ expectations were classified as: permission for a dignified farewell, effective communication, and promotion of comfort and care.

Key words:
Bereavement; COVID-19; Palliative Care; Nursing; Health Communication

Introduction

Palliative care is a holistic approach for individuals of all ages suffering from any disease which threatens one’s continuity of life or from a condition with a high mortality risk, which can cause suffering that may not be relieved without professional intervention and can compromise the individual’s physical aspects, social functioning, and spiritual and/or emotional aspects. Its objective is to improve the patient’s, the family’s, and the caregivers’ quality of life. It applies care strategies for the family and makes use of caregivers during the patient’s illness and up to the final stage of life and the grieving process¹1 Radbruch L, Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M, Munyoro EC, Centeno C, Cleary J, Connor S, Davaasuren O, Downing J, Foley K, Goh C, Gomez-Garcia W, Harding R, Khan QT, Larkin P, Leng M, Luyirika E, Marston J, Moine S, Osman H, Pettus K, Puchalski C, Rajagopal MR, Spence D, Spruijt O, Venkateswaran C, Wee B, Woodruff R, Yong J, Pastrana T. Redefining palliative care - a new consensus-based definition. J Pain Symptom Manag 2020; 60(4):754-7646..

Palliative care in the final stage of life acknowledges the risk of a rapid deterioration of the patients’ conditions and establishes the creation of a predefined care plan, which includes the wishes and preferences of the patients and their families, ensures the protocols for the management of symptoms, and provides psychosocial and grief care.

Grieving is a natural and universal response that most people will endure in face of the loss of a significant other, thus being considered a very stressful event²2 Delalibera M, Delalibera TA, Franco MHP, Barbosa A, Leal I. Adaptação e validação brasileira do instrumento de avaliação do luto prolongado: PG-13. Psicol Teoria Pratica 2017; 19(1):94-106.. However, a substantial part of the grieving reactions may be severe, incapacitating. and may extend beyond normal expectations, resulting in the need for proper professional follow-up³3 Prigerson HG, Boelen PA, Xu J, Smith KV, Maciejewski PK. Validation of the new DSM- 5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World Psychiatry 2021; 20(1):96-106..

Going through the sudden loss of a family member due to a life threatening disease, such as COVID-19, combined with the exposure to several secondary stress factors, such as infection, social isolation, quarantine, and loss of employment, may affect the death rituals and the social support, causing severe grieving situations in people during that pandemic, including prolonged grieving⁴4 Eisma MC, Boelen PA, Lenferink LIM. Prolonged grief disorder following the Coronavirus (COVID-19) pandemic. Psychiatry Res 2020; 288:113031.^,55 Kokou-Kpolou CK, Fernández-Alacántara M, Cénat JM. Prolonged grief related to COVID-19 deaths: do we have to fear a steep rise in traumatic and disenfranchised griefs? Psychol Trauma 2020; 12:S94-S95.. This disorder causes social and occupational involvement of the mourner by generating progressive symptoms of separation anxiety, as well as cognitive, emotional, and behavioral symptoms³3 Prigerson HG, Boelen PA, Xu J, Smith KV, Maciejewski PK. Validation of the new DSM- 5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World Psychiatry 2021; 20(1):96-106..

The disease caused by the coronavirus (COVID-19) has the SARS-CoV-2 virus as its causal agent and presents a potentially fatal pathology, rendering it a major public health concern worldwide. The first cases were reported in China, in December 2019, when five people were hospitalized with severe respiratory distress syndrome, one of whom died⁶6 Rothan HA, Byrareddy SN. The epidemiology and pathogenesis of coronavirus disease (COVID-19) outbreak. J Autoimmun 2020; 109:102433..

As COVID-19 affects communities in general, the death experiences become increasingly more personal, and taking into consideration the environment in which they take place, the physical, mental, and social consequences of social distancing may intensify complications to the process of grieving incurred by the families of COVID-19 victims⁷7 Wallace CL, Wladkowski SP, Gibson A, White P. Grief during the covid-19 pandemic: considerations for palliative care providers. J Pain Symptom Manage 2020; 60(1):e70-e76.. Data from the World Health Organization (WHO) indicate that, by June 2021, nearly four million deaths by COVID-19 had occurred globally, 540,000 of which in Brazil⁸8 World Health Organization (WHO). Coronavirus (COVID-19) dashboard [Internet]. 2021 [cited 2023 mar 15]. Available from: https://covid19.who.int/.
https://covid19.who.int... .

An increase is expected in terms of grieving disorders related to the pandemic, which commonly causes a greater need for treatment⁹9 Eisma MC, Tamminga A, Smid GE, Boelen PA. Acute grief after deaths due to COVID-19, natural causes and unnatural causes: An empirical comparison. J Affect Disord 2021; 278:54-56.. Therefore, to inform the approaches in terms of palliative care, studies need to be conducted to offer a continuous investigation of the impacts of the changes in the services for family caregivers, both during treatment and during grieving¹⁰10 Walshe C. Perspectives on COVID-19 and palliative care research. Palliat Med 2021; 35(1):4-5.. This demonstrates the importance of palliative care in the final stage of life and during the process of grieving.

Therefore, the present study aims to investigate implications regarding the grieving process for family members of COVID-19 victims; to verify the prevalence of prolonged grieving symptoms among family members of COVID-19 victims; and to identify the expectations of families regarding care in the final stage of life provided to their loved ones suffering from COVID-19.

Methodology

Study design

This is an exploratory, descriptive, and cross-sectional study, following a quanti-qualitative approach, of a concomitant nature. To guide the study, the following instruments were used: COnsolidated criteria for REporting Qualitative research (COREQ)¹¹11 Souza VRDS, Marziale MHP, Silva GTR, Nascimento PL. Translation and validation into Brazilian Portuguese and assessment of the COREQ checklist. Acta Paul Enferm 2021; 34:eAPE02631.^,1212 Malta M, Cardoso LO, Bastos FI, Magnanini MMF, Silva CMFPD. STROBE initiative: guidelines on reporting observational studies. Rev Saude Publica 2010; 44(3):559-565. and Strengthening the Reporting of Observational Studies in Epidemiology (STROBE).

Scenario in which data collection was conducted

Since this study dealt with national evidence from the time of the COVID-19 pandemic, it was conducted in the Brazilian virtual reality. This choice was influenced by the public health strategy of social distancing, a measure by the government used to minimize the spread of the virus in the country¹³13 World Health Organization (WHO). Transmission of SARS-CoV-2: implications for infection prevention precautions [Internet]. 2020 [cited 2023 mar 15]. Available from: https://www.who.int/publications/i/item/modes-of-transmission-of-virus-causing-covid-19-implications-for-ipc-precaution-recommendations.
https://www.who.int/publications/i/item/... . It is important to highlight that the institution that proposed this study is located in the city of João Pessoa-PB, Brazil.

The online research modality has often been used as a resource for data collection, especially when expanding the possibilities of access to different groups by the researcher; to reduce costs with in-person stages, such as commuting and staff; and to provide the participants with more privacy and flexibility in terms of the time chosen to answer questionnaires¹⁴14 Salvador PTCO, Alves KYA, Rodrigues CCFL, Oliveira LV. Online data collection strategies used in qualitative research of the health field: a scoping review. Rev Gaucha Enferm 2020; 41:e20190297..

Population

The study population consisted of Brazilians who went through a grieving process after the passing of a family member due to COVID-19.

Selection criteria

The inclusion criteria was: family members of people who passed away due to COVID-19, with or without hospitalization at a health facility; 18 years of age and older, regardless of sex, who had some kind of digital device with Internet access, and that were literate. The exclusion criteria was: participants who gave up on answering the questionnaire before its conclusion.

Sample definition

The sample was non-probabilistic, following the snowball sampling strategy, and by accessibility. This study counted on the participation of 263 individuals who accessed the questionnaire. Of those participants, three clicked the button to choose not to participate (without explaining the reasons why), and 118 did not meet the eligibility criteria, since their family members hospitalized with COVID-19 had not passed away at the time they answered the questionnaire, thus invalidating the analysis of grieving after death. In the final study sample, 142 individuals met the selection criteria.

Study variables

The present study considered the following variables: socio-demographic characteristics of the participants; feelings and symptoms related to grieving; repercussions of the grieving process on the life of the family members; access/interest of the grieving individual to receive professional follow-up; and expectations of the participants in relation to the care provided to their relative in the end of life.

Instruments used for information collection

To enable data collection, an online questionnaire was applied, structured in five parts: 1 - term of consent; 2 - triage question; 3 - basic socioeconomic characteristics of the participant; 4 - PG-13 instrument; 5 - additional questions (referring to repercussions of the process of disease and grieving in the lives of the mourners, professional follow-up in the grieving process and expectations of family members regarding care in the end of life).

Six experts in palliative care were invited to evaluate the instrument in terms of clarity, importance, and adequation of each of the items in the referred instrument, with the purpose of attaining face and content validity. The questionnaire was pre-tested with three people in grief; adaptations were then made in some questions, after which time the instrument was considered adequate for application.

The questions presented had predetermined answer options, also providing the “other” option, in which the participants had the possibility to include whatever answer they so desired. It is important to emphasize that, with the exception of the term of consent and the triage question, none of the questions were mandatory, allowing the participants the autonomy to choose to abstain from answering a question deemed as inadequate, without having to abandon the entire questionnaire. The questions and the formatting of the research were inserted into Google Forms®.

To evaluate grief, this study used the PG-13 prolonged grief evaluation instrument, validated for the Brazilian context, developed based on the criteria for the diagnosis of prolonged grief disorder²2 Delalibera M, Delalibera TA, Franco MHP, Barbosa A, Leal I. Adaptação e validação brasileira do instrumento de avaliação do luto prolongado: PG-13. Psicol Teoria Pratica 2017; 19(1):94-106..

The PG-13 questionnaire contains 13 items, describing a set of symptoms (feelings, thoughts, and actions) related to the loss of a significant other, and are necessarily connected to a social and/or a functional dysfunction. To meet the criteria for the diagnosis of prolonged grief in the previously mentioned instrument, validated for Brazil, the symptoms must be frequent and intense, and must be present for at least six months after the loss. However, according to a researcher and author of instruments aimed at studying prolonged grief, a grief scale may be used with two purposes: to offer a continuous evaluation of the intensity of grief on a dimensional scale and to diagnose prolonged grief syndrome according to defined criteria³3 Prigerson HG, Boelen PA, Xu J, Smith KV, Maciejewski PK. Validation of the new DSM- 5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World Psychiatry 2021; 20(1):96-106..

In this study, the grief reactions due to COVID-19 were examined, and the participants were divided in two groups: family members in grief for less than six months since the death, and family members with six months of grief or more since the death. Researchers, who are international references in the field of grieving, used this research strategy, taking under consideration the recent character of the pandemic, the divergent diagnosis criteria in relation to time, and the opportunity of gathering data that will serve as an empirical basis for verifying if grieving complications will increase due to the pandemic⁹9 Eisma MC, Tamminga A, Smid GE, Boelen PA. Acute grief after deaths due to COVID-19, natural causes and unnatural causes: An empirical comparison. J Affect Disord 2021; 278:54-56.^,1515 Eisma MC, Tamminga A. Grief Before and during the COVID-19 pandemic: multiple group comparisons. J Pain Symptom Manage 2020; 60(6):e1-e4.

16 Boelen PA, Lenferink LI. Symptoms of prolonged grief, posttraumatic stress, and depression in recently bereaved people: symptom profiles, predictive value, and cognitive behavioural correlates. Soc Psychiatry Psychiatr Epidemiol 2020; 55:765-777.^-1717 Tang S, Xiang Z. Who suffered most after deaths due to COVID-19? Prevalence and correlates of prolonged grief disorder in COVID-19 related bereaved adults. Globalization Health 2021; 17:19..

In addition to the aforementioned grief instrument, the researchers also created complementary questions which covered the listed variables and could address the objective of the study, as can be seen in the results section. Moreover, the present study aimed to cooperate in the progress of knowledge by presenting evidence on grief by family members of COVID-19 victims, an issue which deserves attention from researchers and that supports nursing care for the population being studied in the field of Palliative Care.

Data collection

The gathering of data took place between April and June 2021. A Google Forms® link was generated and then advertised by the author in the following media: personal email lists, Facebook® contacts, WhatsApp® groups and Instagram®. Some contacts were obtained by using the hashtags #lutocovid19, #lutocovid, and #vitimascovid in the social networks Facebook® and Instagram®. The link was accompanied by a short presentation text and the content of the study was projected in simple language. Additionally, an explanatory video was produced regarding the research, which was shared together with the link. The participants were invited to take part in the study and to promote it among their contacts. The decision of finishing the research was based on the behavior of the data. It presented constancy after the 10th week of data collection, suggesting a possible saturation of the answers.

Data treatment and analysis

Quantitative data was exported into Google Spreadsheets, charted and organized for analysis in the Statistical Package for the Social Sciences (SPSS), version 22.0, applying descriptive (frequency, percentage, average, median, and standard deviation) and inferential statistics, with the use of the Parson chi-square test; p-values below or equal to 0.05 were considered to be significant. The results were presented in a descriptive manner, with the aid of images and tables to synthesize the findings. Qualitative data was handled by the IRaMuTeQ 0.7 alpha 2 software and was submitted to thematic analysis in three stages: pre-analysis, exploration of the material and treatment of results, and interpretation¹⁸18 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. São Paulo: Hucitec; 2014.. Frequencies were produced to indicate common senses, and the main answers within the domains of the questions were presented as discourse.

Ethical aspects

The research project was approved by the Research Ethics Committee of the proposing institution, logged under decision no. 4,584,374, and followed the ethical guidelines set forth in Resolution No. 466/2012, published by the National Health Council. The researchers also followed recommendations of the National Research Ethics Committee to conduct the study in an online format¹⁹19 Comissão Nacional de Ética em Pesquisa. Orientações para procedimentos em pesquisas com qualquer etapa em ambiente virtual [Internet]. Brasília: MS; 2021 [acessado 2023 mar 15]. Disponível em: http://conselho.saude.gov.br/images/Oficio_Circular_2_24fev2021.pdf.%20Acesso%20em:%2002%20mar.2021.. The use of the PG-13 instrument was authorized by the author, who constructed the version validated for Brazil.

Consent was obtained by the answer to the first question, after reading the free and Informed Term of Consent. All of the surveys were developed anonymously via Google Forms®. When fragments of the family members’ testimonies were used, they were identified by the letter P, for participant, followed by a number based on the order of the research.

Results

Characterization of family members

The sample consisted of 132 family members, mostly women (84%; n=119), with a median age of 41 years (average 41.3; SD=12.4), living in the same location where the family member had passed away (52.1%; n=74) or in other towns (47.9%; n=68). As far as the region where the death occurred, the Northeast corresponded to 73.2% (n=104) of the answers, followed by the Southeast (17.6%; n=25), North (4.2%; n=6), Midwest (2.8%; n=4), and South (2.1%; n=3).

Regarding the degree of kinship of the participants, the loss of mother/father was more frequent (27.5%; n=39), followed by uncle/aunt (26.1%; n=37), grandfather/grandmother (9.2%; n=13), cousin (9.2%; n=13), sibling (8.5%; n=12), spouse (3.5%; n=5), son (0.7%; n=1), and other (15.5%; n=22), such as stepfather/stepmother, father/mother-in-law, brother/sister-in-law. It is important to mention that, among the grieving relatives, seven participants were family members of people who died without receiving proper hospitalization in the healthcare system.

The participants were asked if the passing of the relative caused changes in their life. The answers included: Not completely (27.5%; n=39), Physical repercussions (4.2%; n=4.2), Psychological repercussions (47.9%; n=68), Physical and psychological repercussions (10.6%; n=15), Social/financial repercussions (9.2%; n=13), and No answer (0.7%; n=1).

Participants were questioned as well if they had professional follow-up in the process of grieving, and the results were: Yes (21.8%; n=31); No (6.3%; n=9); I believe I do not need it at this moment (47.2%; n=67); I need follow-up for the grieving process, but I do not know which service I should seek (19.0%; n=27); I already have professional follow-up for other reasons (4.2%; n=6); and No answer (1.4%; n=2).

Symptoms of grief among the family members

Table 1 presents the data regarding symptoms affecting family members according to questions approached in the Prolonged Grief instrument. The participants were divided in two groups according to the period of the grief experience: Group 1: Less than 6 months of grieving; Group 2: 6 months of grieving or more.

This study analyzed 98 participants with a period of grieving of less than 6 months and 44 participants with a period of grieving of 6 months or more. In this second group, 5 (11.4% of the sample) were diagnosed with Prolonged Grief Syndrome, and of the remaining 98 participants, 29 (29.6% of the total sample) were classified as people with severe symptoms of Prolonged Grief Disorder, except for the time criteria ≥6 months (Table 2).

As the data shows, in terms of degree of kinship, we were able to identify that there was a higher concentration of people in a state of grief who lost close relatives, such as father/mother/siblings/spouses. In terms of professional follow-up, most of the respondents who had no professional follow-up (46.5%; n=66) are also the majority of those who had no diagnosis of prolonged grief (Table 3).

Grief disorder

The third question is: “If you knew that your relative could become sick to the extent of dying, what would you like to be done for him in terms of healthcare services?”. This question approaches the expectations of the participants related to the care provided at the end of life for their hospitalized relatives. Considering the answers obtained, a textual corpus was created and processed through IRaMuTeQ 0.7 alpha 2 software, generating a Descending Hierarchic Classification (DHC), with 85.46% of the use of text segments. In the DHC, three classes of words emerged, as Figure 1 shows.

Class 1 - Permission to bid a dignified farewell

This class referred to 55.32% of the text segments, given that the terms grouped here represent the anguish of the family members for not having had the opportunity to participate in the final moments of life of their beloved ones, and for not being able to say farewell.

Families mentioned the desire to accompany the patient and be able to give the affection messages they wished, to give psychological support, to show that the patient is loved by his/her kin.

Class 2 - Effective communication

In this class, corresponding to 29.79% of the text segments, we can see a concentration of statements related to difficulties in communication, the interviewees said that there was no clarity in the information, not everyone did video calls and whenever they did do them, they did not follow regular times, increasing even further the family’s anxiety.

The desire to grant the patients’ last wishes was a recurring answer as well; family members mentioned that they wished they could grant this to their sick relatives:

There were also comments from patients who accepted the situation and were aware that the healthcare team could not do much:

Class 3 - Promotion of comfort and care

Accounting for 14.89% of the text segments, this class showed the wish of the family members for the patients, with the help of the medical professionals, to receive the comfort and care that they would like to provide but were not able to because of restrictions imposed on family members.

In this context of pain and suffering, but also, of hope, we could notice a wish for the patient to be saved regardless of the seriousness of the disease, and some interviewees hoped to be able to bring their relatives back home:

Discussion

The results provide evidence of the complexity of the responses regarding grieving by family members of COVID-19 victims, revealing mainly emotional and behavioral characteristics, as well as possible risks of bad adaptation by those in a state of grieving.

The present study found a high level of severe grieving symptoms among people who lost family members to COVID-19 more recently (<6 months), also known as the severe grieving period, since nearly 30% (n=29) fit into the criteria of prolonged grief (Table 2), not including the time element. Such a finding contradicts with results verified by recent studies conducted in the Netherlands, in which people who suffered a recent loss during the pandemic showed higher levels of grief in comparison to people who suffered a recent loss before the pandemic. The authors suggest that expectations of death may explain this effect, considering that people who experience grief related to COVID-19 experience the loss as something unexpected, more often than those who experienced a natural loss. The authors also recommend that palliative care professionals, grief counselors, and policymakers should be aware of this demand⁹9 Eisma MC, Tamminga A, Smid GE, Boelen PA. Acute grief after deaths due to COVID-19, natural causes and unnatural causes: An empirical comparison. J Affect Disord 2021; 278:54-56.^,1515 Eisma MC, Tamminga A. Grief Before and during the COVID-19 pandemic: multiple group comparisons. J Pain Symptom Manage 2020; 60(6):e1-e4..

On the other hand, among the people who had a grieving period of more than six months, 11.4% (n=5) fully met the comprehensive criteria for the diagnosis of Prolonged Grief Syndrome (Table 2). This result is similar to what was found by the validation study of the PG-13 for the Brazilian population, prior to the pandemic, in which a 10.43 percentage was found of people meeting the criteria of Prolonged Grief²2 Delalibera M, Delalibera TA, Franco MHP, Barbosa A, Leal I. Adaptação e validação brasileira do instrumento de avaliação do luto prolongado: PG-13. Psicol Teoria Pratica 2017; 19(1):94-106.. This result, however, diverges from the expectation of increased levels of prolonged grief after death by COVID-19, since the people who effectively fit into all of the criteria corresponded to a percentage similar to that of the pre-pandemic period.

According to the data observed in Table 3, there is a significant relationship between being a family member who meets the criteria of Prolonged Grief Syndrome and the degree of kinship. The study also revealed that most of the respondents who do not have professional follow-up (46.5%; n=66) are also the majority who have no diagnosis of prolonged grief (Table 3). However, this finding does not necessarily mean that people who did not meet all of the diagnostic criteria are not suffering. It is important to mention that some family members (19.0%; n=27) answered that they need follow-up, but they do not know which service could meet their demands.

One study on prolonged grief in China showed that more severe prolonged grief symptoms were associated with the loss of a closer relative due to COVID-19. The study investigated people with grieving periods more than and less than six months, verifying a 29.3% prevalence of prolonged grief symptoms with no considerable difference between the two groups. However, one interesting fact shows that 30% of the participants who suffered grief for more than 6 months believed that their grieving reactions were above what is expected by the local culture. This fact suggests that there is discrepancy between what the people themselves think and feel, and the concept of abnormality of grief from the standpoint of a professional evaluation¹⁷17 Tang S, Xiang Z. Who suffered most after deaths due to COVID-19? Prevalence and correlates of prolonged grief disorder in COVID-19 related bereaved adults. Globalization Health 2021; 17:19..

Notably, behind the deaths listed as mere statistics, there are social networks of family and friends who are deeply moved by a loss¹⁸18 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. São Paulo: Hucitec; 2014., which is often considered to be unexpected due to the possibility of a rapid deterioration of conditions due to severe reactions to the disease.

From the analysis of the results of each question from the PG-13 instrument, we can see considerable frequencies of feelings of longing for or absence of the person who perished, as well as episodes of anguish. Considering cognitive, emotional, and behavioral symptoms, we can see that family members are shocked or confused by the loss, with feelings of bitterness and difficulties in accepting the death (Table 1).

One study, which investigated the development of prolonged grief, anxiety, and depressive symptoms, found that the first anxiety symptoms (in the first month) seem to contribute to the development of subsequent depressive symptoms of grief, which worsen in a later stage¹⁹19 Comissão Nacional de Ética em Pesquisa. Orientações para procedimentos em pesquisas com qualquer etapa em ambiente virtual [Internet]. Brasília: MS; 2021 [acessado 2023 mar 15]. Disponível em: http://conselho.saude.gov.br/images/Oficio_Circular_2_24fev2021.pdf.%20Acesso%20em:%2002%20mar.2021..

By contrast, some results suggest relevant aspects of the process of dealing with the loss by some of the participants, as it can be noticed in people who stated that they carry on with life, preserving some significance and maintaining interpersonal relationships (Table 1).

Although the grieving experience may be something natural, it is important to consider that the disturbance of the connection resulting from the generalized and persistent longing for the deceased, the loss of significance, and identity disorders are all symptoms that may arise late or last for over a year after death, being distressing and incapacitating. These symptoms, combined with any of the ten additional grieving reactions present in the grief instrument and presumed as indicative of intense emotional pain, indicate the need for specialized treatment for the person in grief³3 Prigerson HG, Boelen PA, Xu J, Smith KV, Maciejewski PK. Validation of the new DSM- 5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World Psychiatry 2021; 20(1):96-106..

Several participants reported repercussions in their social and professional lives and other activities in part III of the grief instrument (Table 2). This result was complemented by a characterization question, in which respondents stated that the death of the relative caused changes in their lives, in the physical, psychological, social, and financial dimensions.

Economic hardships, uncertainty about the future, as well as approaches required for the containment of the spread of the virus, all play critical roles in the social and psychological impact, in both the short and long terms, of the COVID-19 pandemic. Inequalities based on race and socioeconomic level influence the rates of both infection and death, as well as the steps required for recovery²⁰20 Osofsky JD, Osofsky HJ, Mamon LY. Psychological and social impact of COVID-19. Psychol Trauma Theory Res Pract Policy 2020; 12(5):468-469.. In Brazil, the high number of infections and deaths by COVID-19 reveals a profile of social impact, since the pandemic, initiated in neighborhoods of high socioeconomic level, gradually spread through the peripheral areas²¹21 Medeiros EAS. A luta dos profissionais de saúde no enfrentamento da COVID-19. Acta Paul Enferm 2020; 33:e-EDT20200003.

Regarding the expectations of the participants related to end-of-life care for their hospitalized relatives, if they knew that their relatives could become sick to the point of dying, the themes identified were: Permission for a dignified farewell, Effective communication, and Promotion of comfort and care.

The answers by the family members were mostly concise, something common in Internet communication. However, they did synthesize what really made sense to them in terms of grave situations. The findings indicate that the characteristics of access to patients during the pandemic represented the lack of a closer and more frequent contact (Class 1).

The hospitals became a habitual place for end-of-life situations, but not in the usual conditions, owing to such factors as the restrictive measures, which blocked families from staying with hospitalized relatives. Factors, such as social distancing, unexpected death, and the impossibility to bid farewell, may be predictors of Prolonged Grief Syndrome. Therefore, there is a need to dignify the conditions of end-of-life care in the context of the COVID-19 pandemic²²22 Beneria A, Castell-Panisello E, Sorribes-Puertas M, Forner-Puntonet M, Serrat L, García- González S, Garriga M, Simon C, Raya C, Montes MJ, Rios G, Bosch R, Citoler B, Closa H, Corrales M, Daigre C, Delgado M, Dip ME, Estelrich N, Jacas C, Lara B, Lugo-Marin J, Nieto-Fernández Z, Regales C, Ibáñez P, Blanco E, Ramos-Quiroga JA. End of life intervention program during COVID-19 in Vall d'Hebron University Hospital. Front Psychiatry 2021; 3(12):608973..

In many instances the bodies were removed after death, identification of the deceased was done at a distance and by means of digital pictures of the face, and the corpses were kept in body bags and were not dressed in the outfit chosen by the family. The coffins were closed and had to be kept closed during the funeral, and the burials were delayed or the family had to watch from a distance, or only a few people were allowed to attend²³23 Aguiar A, Pinto M, Duarte R. Grief and mourning during the COVID-19 pandemic in Portugal. Acta Med Port 2020; 33(9):543-545.. In the proposed study, similar situations were verified, as can be seen in the statement of a participant regarding her deceased mother: “I wish they had let the family take the outfit that she loved the most, to dress her with it” (P-66).

It is interesting to highlight that some family members believe that it is indispensable to have frequent communication and information regarding the seriousness of the conditions (Class 2). In that regard, we understand that families and patients in palliative care want to talk about their preferences if the disease should progress²⁴24 Sharpe TD. You won't die alone: technology and compassion in the covid-19 pandemic. Enferm Foco 2020; 11(2 n. esp.):52-54., since a lack of transparency can become an additional source of stress. Given the circumstances of the pandemic, professionals need tools and resources to facilitate care planning and quality communication⁷7 Wallace CL, Wladkowski SP, Gibson A, White P. Grief during the covid-19 pandemic: considerations for palliative care providers. J Pain Symptom Manage 2020; 60(1):e70-e76..

The data suggests that, in cases of imminent death, the participants mentioned that they wished their relatives had received a Promotion of Comfort and Care (Class 3), with emphasis on pain relief.

Symptom control is essential, and manifestations, such as dyspnea, pain and delirium in severely sick patients, must be properly addressed, considering that lack of comfort causes distress to the patients, families, and members of the healthcare team, leading to exhaustion and compassion fatigue²⁵25 Fadul N, Elsayem AF, Bruera E. Integration of palliative care into COVID-19 pandemic planning. BMJ Support Palliat Care 2021; 11(1):40-44..

Considering that participants stated that, “even in the imminence of death, they assumed that everything possible was done to keep the patient alive” (P-20). We emphasize that palliative care does not deny the importance of life-saving or life-prolonging care²⁶26 Chalk D, Robbins S, Kandasamy R, Rush K, Aggarwal A, Sullivan R, Chamberlain C. Modelling palliative and end-of-life resource requirements during COVID-19: implications for quality care. BMJ Open 2021; 11(5):e043795.; it rather recognizes the moral imperative of providing therapeutic proportionality in the care and relief of suffering for everyone, even when a cure is impossible.

The management of symptoms and support to grief are essential elements of palliative care²⁷27 Harrop E, Scott H, Sivell S, Seddon K, Fitzgibbon J, Morgan F, Pickett S, Byrne A, Nelson A, Longo M. Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care. BMC Palliat Care 2020; 19(1):29.. Therefore, grief related to terminal cases in the current context is something that must be reconsidered, including the development of innovative means through which to connect people, and deal with the before and after death, adapting rituals, resorting to physical or virtual alternatives of memorializing and paying respects, and therefore providing comfort to the families while maintaining the rules of infection control²⁸28 Helton G, Wolfe J, Snaman JM. Definitely Mixed feelings: the effect of covid-19 on bereavement in parents of children who died of cancer. J Pain Symptom Manage 2020; 60(5):e15-e20.^,2929 Mayland CR, Harding AJE, Preston N, Payne S. Supporting on grief and bereavement adults bereaved through covid-19: a rapid review of the impact of previous pandemics. J Pain Symptom Manage 2020; 60(2):e33-e39..

The results presented in this study contribute to the improvement of knowledge in the field of palliative care, with emphasis on acknowledging grief and reflecting on end-of-life care. The use of an instrument for the evaluation of people in grief, such as the PG-13, is recommended in the field of palliative nursing care as one of the ways to identify indicators of suffering, providing help in terms of relieving symptoms and eliciting the work of multidisciplinary teams.

Interventions carried out by nurses, such as telephone contacts, follow-up, and emotional support before and after death, may help to reduce grief symptoms among family caregivers, such as anxiety, anguish, and depressed mood. However, these practices require a more in-depth study, with a higher level of evidence³⁰30 Tofthagen CS, Kip K, Witt A, McMillan SC. Complicated grief: risk factors, interventions, and resources for oncology nurses. Clin J Oncol Nurs 2017; 21(3):331-337..

As limitations of this study, we must mention the challenges in conducting a study on such a complex theme, conducted via internet during the pandemic, as can be noted in the many short answers, typical of a social network language, thus complicating a deeper analysis of the testimonies. Other relevant factors included: working with a non-probabilistic sample, a higher number of answers from the Northeast region (which was the author’s region of origin), and the fact that only people with electronic devices (computer, smartphones) connected to the internet were able to access the questionnaire, which does not represent the reality of the Brazilian population.

Conclusion

The present study illustrates elements of the evaluation of grief among family members of COVID-19 victims, involving separation anxiety elements, cognitive and behavioral symptoms, and social implications. The symptoms of Prolonged Grief Syndrome have a significant relationship with the degree of kinship, as people who lost a close relative due to COVID-19 generally presented intense grieving reactions.

Grief evaluation instruments, such as the PG-13, may be useful for nurses in identifying elements of suffering in grieving people, in enabling better mental health support, in relieving patients of symptoms, and in referring at-risk individuals to specialized care.

One point that stands out is that in end-of-life situations, when people are so sick that they are about to die, the findings indicate that families expect transparency in communication regarding the health situation, as well as moments to say goodbye and the promotion of comfort for the sick person. The findings provide evidence for nurses and other health professionals that they need to adopt the practice of palliative care for patients and family members in such scenarios. Further studies are warranted in order to investigate relationships between the described findings so as to expand knowledge regarding this complex moment experienced by humanity.

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