Abstracts

Introduction

COVID-19, a disease caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), emerged in December 2019 ¹1. Farahmandnia B, Hamdanieh L, Aghababaeian H. COVID-19 and unfinished mourning. Prehosp Disaster Med 2020; 35:464.^,22. Lipsitch M, Swerdlow DL, Finelli L. Defining the epidemiology of Covid-19 - studies needed. N Engl J Med 2020; 382:1194-6. and quickly spread worldwide due to its transmission characteristics, which occurs mainly by person-to-person contact and via droplets in the air ³3. Mallah SI, Ghorab OK, Al-Salmi S, Abdellatif OS, Tharmaratnam T, Iskandar MA, et al. COVID-19: breaking down a global health crises. Ann Clin Microbiol Antimicrob 2021; 20:35.. After the disease was found and registered in several different countries, the World Health Organization (WHO) declared a pandemic status on March 11, 2020 ¹1. Farahmandnia B, Hamdanieh L, Aghababaeian H. COVID-19 and unfinished mourning. Prehosp Disaster Med 2020; 35:464.^,44. Rismanbaf A. Potential treatments for COVID-19: a narrative literature review. Arch Acad Emerg Med 2020; 8:e29.^,55. Oliveira WA, Oliveira-Cardoso EA, Silva JL, Santos MA. Impactos psicológicos e ocupacionais das sucessivas ondas recentes de pandemias em profissionais da saúde: revisão integrativa e lições aprendidas. Estud Psicol (Campinas) 2020; 37:e200066.^,66. Ferracioli NGM, Oliveira WA, Oliveira-Cardoso EA, Corradi-Webster CM, Risk EN, Santos MA. Comportamento suicida: o paradoxo vida e morte em meio à pandemia de COVID-19. Estud Interdiscip Psicol 2021; 12:75-98.^,77. Oliveira WA, Andrade ALM, Souza VLT, De Micheli D, Fonseca LMM, Andrade LS, et al. COVID-19 pandemic implications for education and reflections for school psychology. Psicol Teor Prat 2021; 23:1-26..

The growing number of deaths caused by COVID-19 (over 6 million) has created many public health crises, demanding global collective efforts and articulation of governments, research institutions, health systems, and communities. In several countries, protocols for hygiene and the use of masks − in addition to quarantine measures for the population − were developed to control the spread of the virus, avoid the overload of health services, and control the number of deaths ³3. Mallah SI, Ghorab OK, Al-Salmi S, Abdellatif OS, Tharmaratnam T, Iskandar MA, et al. COVID-19: breaking down a global health crises. Ann Clin Microbiol Antimicrob 2021; 20:35.^,88. Emidio TS, Okamoto MY, Santos MA. Impacto do isolamento social no cotidiano de mães em homeoffice durante a pandemia de COVID-19. Estud Psicol (Natal) 2021; 26:358-69.^,99. Esper MV, Araújo JS, Santos MA, Nascimento LC. Atuação do professor de educação especial no cenário da pandemia de Covid-19. Rev Bras Educ Espec 2022; 28:227-42.^,1010. Wang ML, Behrman P, Dulin A, Baskin ML, Buscemi J, Alcaraz KI, et al. Addressing inequities in COVID-19 morbidity and mortality: research and policy recommendations. Transl Behav Med 2020; 10:516-9..

Studies show that the measures adopted to contain the spread of the virus affected the way people were dying worldwide ³3. Mallah SI, Ghorab OK, Al-Salmi S, Abdellatif OS, Tharmaratnam T, Iskandar MA, et al. COVID-19: breaking down a global health crises. Ann Clin Microbiol Antimicrob 2021; 20:35.^,1111. Ingravallo F. Death in the era of the COVID-19 pandemic. Lancet Public Health 2020; 5:e258.. The high number of deaths not only contributed to the perception of constant threat but also resulted in a high number of bereaved people during the pandemic. Grief, in this context, was marked by restrictions on hospital visits, decreased social support, and changes in mourning rituals ¹1. Farahmandnia B, Hamdanieh L, Aghababaeian H. COVID-19 and unfinished mourning. Prehosp Disaster Med 2020; 35:464.^,33. Mallah SI, Ghorab OK, Al-Salmi S, Abdellatif OS, Tharmaratnam T, Iskandar MA, et al. COVID-19: breaking down a global health crises. Ann Clin Microbiol Antimicrob 2021; 20:35.. Such changes in grief, caused by the COVID-19 pandemic crisis, highlighted areas for future studies which also seem to be related to implications for mental health, with increased rates of depression and anxiety, as well as persistent grief. Scientific literature also indicates a psychological crisis, which can persist even after the pandemic ¹1. Farahmandnia B, Hamdanieh L, Aghababaeian H. COVID-19 and unfinished mourning. Prehosp Disaster Med 2020; 35:464.^,1212. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.^,1313. Ornell F, Schuch JB, Sordi AO, Kessler FHP. "Pandemic fear" and COVID-19: mental health burden and strategies. Braz J Psychiatry 2020; 42:232-5..

Coping with crisis demands interventions aimed at preventing critical situations, acting in the emergency and post-emergency recovery ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.. When the COVID-19 pandemic was established, actions could have been planned and adopted to deal with the moment of crisis and to reduce its consequences. In this sense, studies suggest the importance of public policies that consider comprehensive care, from socio-community-based actions to specialized care to accompany bereaved people ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.. Understanding the particularities of the grief experience during the COVID-19 pandemic is essential to develop and apply effective intervention strategies.

Aim

This systematic review and meta-synthesis aimed to summarize and reinterpret the results of qualitative scientific studies on the bereavement experiences of people whose family members died during the COVID-19 pandemic via a thematic synthesis.

Methods

Design

This systematic review and meta-synthesis of qualitative studies were conducted based on thePreferred Items for Systematic Reviews and Meta-Analysis Statement(PRISMA) ¹⁴14. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009; 151:264-9.. This review is based on the steps recommended by the literature ¹⁵15. Siddaway AP, Wood AM, Hedges LV. How to do a systematic review: a best practice guide for conducting and reporting narrative reviews, meta-analyses, and meta-syntheses. Annu Rev Psychol 2019; 70:747-70.^,1616. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8:45.^,1717. Rocha JS, Arima L, Chibinski AC, Werneck RI, Moysés SJ, Baldani MH. Barriers and facilitators to dental care during pregnancy: a systematic review and meta-synthesis of qualitative studies. Cad Saúde Pública 2018; 34:e00130817.^,1818. Boffi LC, Guijarro-Rodrigues EC, Santos MA. Experience of masculinity performed by transgender men: qualitative evidence and metasynthesis. Estud Psicol (Campinas) 2022; 39:e200221.^,1919. Rodrigues ECG, Neris RR, Nascimento LC, de Oliveira-Cardoso ÉA, Santos MA. Body image experience of women with breast cancer: a meta-synthesis. Scand J Caring Sci 2022; [Online ahead of print].^,2020. Souza C, Santos AVSL, Rodrigues ECG, Dos Santos MA. Experience of sexuality in women with gynecological cancer: meta-synthesis of qualitative studies. Cancer Invest 2021; 39:607-20.^,2121. Ludvigsen MS, Hall EOC, Meyer G, Fegran L, Aagaard H, Uhrenfeldt L. Using Sandelowski and Barroso's meta-synthesis method in advancing qualitative evidence. Qual Health Res 2016; 26:320-9.^,2222. Shorey S, Chan V. Lessons from past epidemics and pandemics and a way forward for pregnant women, midwives and nurses during COVID-19 and beyond: a meta-synthesis. Midwifery 2020; 90:102821.: (1) elaboration of the research question; (2) systematic identification of publications from the databases of interest; (3) selection of articles for analysis; (4) characterization and evaluation of studies; (5) data extraction; and (6) synthesis to integrate the knowledge produced. The data was analyzed qualitatively ¹⁶16. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8:45. and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guide ²³23. Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in report the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol 2012; 12:181-9. was used to report the essential elements that compose a synthesis of qualitative evidence. The process was conducted by two separate reviewers and correlation coefficient and Cohen’s kappa ²⁴24. Reis SMG, Leite ACAB, Alvarenga WA, Araújo JS, Zago MMF, Nascimento LC. Metassíntese sobre o homem como pai e cuidador de um filho hospitalizado. Rev Latinoam Enferm 2017; 25:e2922.^,2525. Neris RR, Bolis LO, Leite ACAB. Functioning of structurally diverse families living with adolescents and children with chronic disease: a metasynthesis. J Nurs Scholarsh 2022; [Online ahead of print]. are the most appropriate statistics to verify the consistency of the selection of articles and assess the inter-reviewer reliability.

Protocol and registration

A protocol in the International Prospective Register of Systematic Reviews (PROSPERO) has been registered under the number CRD42021299001.

Identification and selection of studies

The literature search strategy was pre-planned in order to seek all available studies on the topic ¹⁶16. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8:45.^,2626. Carvalho LF, Pianowski G, Santos MA. Guidelines for conducting and publishing systematic reviews in psychology. Estud Psicol (Campinas) 2019; 36:e180144.. The SPIDER tool (Sample, Phenomenon of Interest, Design, Evaluation, Research Study) ²⁷27. Methley AM, Campbell S, Chew-Graham C, McNally R, Cheraghi-Sobi S. PICO, PICOS and SPIDER: a comparison study of specificity and sensitivity in three search tools for qualitative systematic reviews. BMC Health Serv Res 2014; 14:579.^,2828. Cooke A, Smith D, Booth A. Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual Health Res 2012; 22:1435-43. was used to develop the search strategy and the guiding question, which was formulated as follows: “How the scientific literature (D) presents qualitative evidence (R) regarding the experience (E) of bereavement (PI) of people who have lost family members during the COVID-19 pandemic (S)?” (Box 1 and Supplementary Material: http://cadernos.ensp.fiocruz.br/static//arquivo/suppl-0580-22_6532.pdf).

Searches were performed by two independent reviewers (P.P.B.S. and C.S.), in January 2022, in six databases: Web of Science, Scopus, PubMed/MEDLINE, CINAHL (via EBSCO), PsycINFO, and LILACS. The descriptors and keywords were listed from the Health Sciences Descriptors (DeCS), the Medical Subject Headings (MeSH), the APA Thesaurus, the CINAHL Subject Headings, and the SciVal - Topics & Topic Clusters with the Boolean operators (AND, OR), respecting the specifics of each database.

An initial search strategy was developed from the selection and improvement of descriptors in the PubMed database and later adapted to the other selected databases. Articles published in English, Portuguese, or Spanish were selected, due to the fluency of the researchers, that were published during the COVID-19 pandemic period ¹1. Farahmandnia B, Hamdanieh L, Aghababaeian H. COVID-19 and unfinished mourning. Prehosp Disaster Med 2020; 35:464.^,44. Rismanbaf A. Potential treatments for COVID-19: a narrative literature review. Arch Acad Emerg Med 2020; 8:e29.. Thus, the search was limited to the period from March 2020 to December 2021.

Eligibility (inclusion and exclusion) criteria

Studies were included if they were: (1) primary qualitative studies; (2) secondary analyses of empirical studies, as long as they gathered reports of family experience; (3) studies carried out with adults aged over 18 years; (4) studies that addressed the death of a family member during the COVID-19 pandemic period and bereavement experiences during the COVID-19 pandemic period; (5) published from 2020 to 2021; and (6) written in English, Portuguese, or Spanish.

The exclusion criteria were: (1) quantitative or mixed-method designs; (2) lack of primary data (policy briefs, opinions, progress reports, systematic reviews); (3) grey literature ²⁹29. Población DA, Noronha DP. "White" and "grey" literature produced in information science by doctors/lectures from the Brazilian graduate programs. Ci Inf 2002; 31:98-106. (i.e., unpublished or non-peer-reviewed reports, including conference proceedings); (4) studies carried out with children and/or adolescents aged under 18 years; and (5) studies that addressed grief prior to the COVID-19 pandemic.

Identification and selection of studies

The resulting papers were imported into a reference manager software ³⁰30. Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan-a web and mobile app for systematic reviews. Syst Rev 2016; 5:210. (Rayyan for Systematic Reviews; https://www.rayyan.ai/). Duplicates were removed, and an initial screening and selection of titles and abstracts were carried out by two independent reviewers (P.P.B.S. and C.S.), according to the inclusion/exclusion criteria. Texts of the remaining studies were obtained in full for analysis, aiming to include/exclude the paper for the systematic review. To assess the consensus among peers on the eligibility of studies and, thus, verify the consistency and validity of the selection of articles, the Kappa index ²⁴24. Reis SMG, Leite ACAB, Alvarenga WA, Araújo JS, Zago MMF, Nascimento LC. Metassíntese sobre o homem como pai e cuidador de um filho hospitalizado. Rev Latinoam Enferm 2017; 25:e2922.^,2525. Neris RR, Bolis LO, Leite ACAB. Functioning of structurally diverse families living with adolescents and children with chronic disease: a metasynthesis. J Nurs Scholarsh 2022; [Online ahead of print].^,3131. Viera AJ, Garrett JM. Understanding interobserver agreement: the Kappa statistic. Fam Med 2005; 37:360-3. was calculated, producing a result of 0.84, indicating almost perfect agreement between reviewers. Discrepancies in the final decision about a specific paper were discussed with a third reviewer (M.A.S.) in order to reach consensus.

The process of searching and selecting the studies eligible for the elaboration of this thematic synthesis is represented by a flowchart recommended by the PRISMA strategy, which details the way in which the studies were selected and retrieved for composition of the analysis corpus ¹⁴14. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009; 151:264-9..

Critical appraisal of studies included

The quality of the studies was critically evaluated for rigor, credibility, and relevance, using theCritical Appraisal Skills Programme(CASP Qualitative Checklist) for qualitative research ³²32. Critical Appraisal Skills Programme. CASP Qualitative Research Checklist. https://casp-uk.net/#!casp-tools-checklists/c18f8 (accessed on 14/Feb/2022).
https://casp-uk.net/#!casp-tools-checkli... , as recommended in the Centre for Reviews and Dissemination, University of York (CRD; United Kingdom) guidelines ³³33. Booth AM, Wright KE, Outhwaite H. Centre for Reviews and Dissemination databases: value, content, and developments. Int J Technol Assess Health Care 2010; 26:470-2.. This tool allows for the evaluation of all types of qualitative data and contains only ten questions, facilitating the evaluation that was applied independently by three reviewers (P.P.B.S., C.S., and E.C.G.R.). Disagreements were resolved by a discussion with a fourth reviewer (M.A.S.) (Box 2).

The papers were scored for each criterion: 1 - if the criterion was met; 0 - if the criterion was not met; 0.5 - if the criterion was partially met. The maximum score for a paper was 10. CASP assessment was conducted to ensure transparency in the potential risk of bias, studies were included in the review regardless of quality score.

Data extraction and analysis

The data were obtained by using customized extraction forms. The following information was recorded for each study included: (1) authorship and year of publication; (2) country; (3) participants’ characteristics; (4) setting; (5) objectives; (6) methodological design; (7) data collection/analysis; and (8) quality score (CASP).

A synthesis was carried out in three stages according to Thomas & Harden’s guidelines ³⁴34. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8:45.: (1) the free line-by-line coding of the findings of primary studies (reading qualitative studies to create codes related to the objectives of the thematic synthesis); (2) the organization of these “free codes” into related areas to develop “descriptive” themes; and (3) the development of the “analytical” theme. In the first stage, full texts of each selected study were scrutinized and freely coded line-by-line. All the original codes, cited in the studies, were listed. Relevant additional codes, when identified by reviewers, were also included in the analysis. In the second stage of analysis, the free codes were organized under initial descriptive themes, based on their similarities and differences, according to the bereavement experiences of people whose family members died during the COVID-19 pandemic. These themes were interactively defined in discussions between the reviewers. The third stage involved developing the “analytical theme” through new interpretative constructs that synthesized the findings across all the included studies.

While the development of descriptive themes remains “close” to primary studies, the analytical theme represents a stage of interpretation in which reviewers “go beyond” primary studies and generate new interpretive constructs, explanations, or hypotheses. The use of computer software can facilitate this method of synthesis ³⁴34. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8:45.. All text under the headings “results” was extracted electronically and inserted to QDA Miner Lite (https://provalisresearch.com/), a computer software program used to assist in the organization of codes and themes during the analysis of qualitative data. Two reviewers (P.P.B.S., C.S.) performed all stages of data analysis. The final thematic synthesis was discussed and validated by three researchers experienced in this type of analysis (E.A.O.C., E.C.G.R., M.A.S.).

During the thematic synthesis, the first two reviewers searched for similarities and differences among the codes to begin grouping them into a hierarchical tree-like structure. New codes were created to capture the meaning of the initial code groups. This qualitative synthesis summarized the literature available. Box 3 shows the process, which organizes two descriptive themes and one analytical theme.

Results

After identifying the studies in the selected databases, the duplicates were excluded. Subsequently, two reviewers independently read the titles and abstracts of these studies, following the previously established inclusion and exclusion criteria. At the end of the selection process, one article found via a non-systematic search was added. Thus, the sample consisted of 14 articles. The selection of the studies was summarized in a PRISMA guidelines 14 compliant flow chart (Figure 1).

Quality appraisal of evidence

All studies reported objectives and methodology used. The relationship between researcher and participants was satisfactorily reported in only one study ³⁵35. Guité-Verret A, Vachon M, Ummel D, Lessarde E, Francoeur-Carron C. Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic. Int J Qual Stud Health Well-being 2021; 16:1996872.. All the articles explained the process and rigor of data analysis, as well as clearly presenting the results and indicating contributions to the area of study. Considerations regarding research ethics were reported in all articles, however, two studies ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715.^,3737. Tay DL, Thompson C, Jones M, Gettens C, Cloyes KG, Reblin M, et al. "I feel all alone out here": analysis of audio diaries of bereaved hospice family caregivers during the COVID-19 pandemic. J Hosp Palliat Nurs 2021; 23:346-53. did not report the approval number of the respective Research Ethics Committees.

Features of the included studies

The articles included (n = 14; Table 1) were developed in the following countries: the United States (n = 2), the United Kingdom (n = 2), Brazil (n = 1), Canada (n = 1), France (n = 1), India (n = 1), Iran (n = 1), Italy (n = 1), Malaysia (n = 1), Netherlands (n = 1), Philippines (n = 1), and Spain (n = 1). Only one article ²⁰20. Souza C, Santos AVSL, Rodrigues ECG, Dos Santos MA. Experience of sexuality in women with gynecological cancer: meta-synthesis of qualitative studies. Cancer Invest 2021; 39:607-20. was published in 2020, the others were from 2021. The theoretical foundations of the studies were developed from Grounded Theory (n = 1), Phenomenology (n = 3), the Critical Realist Theoretical Approach (n = 1), Theory of Grief (n = 1), Dignity models for end-of-life experiences by Chochinov and Van Gennip (n = 1), and the Salvifci Doloris of John Paul II (n = 1). Other studies, however, presented a generic qualitative research design (n = 6), that is, studies where the theoretical framework used to support the research was not properly explained ²²22. Shorey S, Chan V. Lessons from past epidemics and pandemics and a way forward for pregnant women, midwives and nurses during COVID-19 and beyond: a meta-synthesis. Midwifery 2020; 90:102821..

The data collection methods used in the studies involved in-depth interviews (n = 6), semi-structured interviews carried out individually (n = 4), audio diaries (n = 1), tweets from Twitter (n = 1), social media posts (n = 1), and documents published in digital media (n = 1). The interviews were conducted in person (n = 1) or through phone calls and video conferencing applications, such as WhatsApp, Skype, and Zoom (n = 6), or they were not specified (n = 3). Regarding data analysis, the studies used thematic analysis (n = 9), iterative thematic approach (n = 1), content analysis (n = 1), interpretative phenomenological analysis (n = 1), content and discourse analysis (n = 1), and in-depth content analysis (n = 1).

Study participants totaled 407 family members, aged 20 to 83 years, bereaved during the COVID-19 pandemic period, comprising 88 sons/daughters, 49 friends, 38 partners, 38 grandchildren, 34 nephew/nieces, 21 parents, 18 siblings, 14 more distant relatives, 9 cousins, 5 daughters/sons-in-law, 2 sisters/brothers-in-law, 2 grandparents, and 1 aunt. Two studies ³⁸38. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583.^,3939. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81. did not describe the degree of kinship, referring to 65 participants only as “family members”. Finally, one article ⁴⁰40. Selman L, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: a thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med 2021; 35:1267-76. did not state the relationship between the deceased and the 23 bereaved people. As previously described, some articles ³⁸38. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583.^,3939. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81.^,4040. Selman L, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: a thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med 2021; 35:1267-76.^,4141. Hernández-Fernández C, Meneses-Falcón C. I can't believe they are dead. Death and mourning in the absence of goodbyes during the COVID-19 pandemic. Health Soc Care Community 2023; 30:e1220-32. included friends and other unspecified relationships in the sample in addition to family members. These articles were included, and data related to the bereavement of family members were considered in the analysis.

The age of the deceased, provided by six articles ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715.^,3939. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81.^,4242. Wong LP, Tan SL, Alias H, Sai TE, Saw A. Psychological consequences of the delay in the Silent Mentor Programme during the COVID-19 pandemic: perspectives from family members of silent mentors. OMEGA (Westport) 2021; [Online ahead of print].^,4343. Chen C, Wittenberg E, Sullivan SS, Lorenz RA, Chang YP. The experiences of family members of ventilated COVID-19 patients in the intensive care unit: a qualitative study. Am J Hosp Palliat Care 2021; 38:869-76.^,4444. Hanna JR, Rapa E, Dalton LJ, Hughes R, McGlinchey T, Bennett KM, et al. A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic. Palliat Med 2021; 35:843-51.^,4545. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355., ranged between 19 and 90 years of age. The deaths occurred during the pandemic period, with COVID-19 being the main cause of death, although it is not possible to specify the exact number of people who died. It is known that, from the total of bereaved individuals interviewed, at least 346 people lost family members due to COVID-19 and ten individuals, to other causes (illness = 4, accident = 2, normal death = 2, cardiac arrest = 1, and suicide = 1). The causes of death of the family members of the remaining 51 bereaved were not specified in four articles ³⁵35. Guité-Verret A, Vachon M, Ummel D, Lessarde E, Francoeur-Carron C. Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic. Int J Qual Stud Health Well-being 2021; 16:1996872.^,3737. Tay DL, Thompson C, Jones M, Gettens C, Cloyes KG, Reblin M, et al. "I feel all alone out here": analysis of audio diaries of bereaved hospice family caregivers during the COVID-19 pandemic. J Hosp Palliat Nurs 2021; 23:346-53.^,4141. Hernández-Fernández C, Meneses-Falcón C. I can't believe they are dead. Death and mourning in the absence of goodbyes during the COVID-19 pandemic. Health Soc Care Community 2023; 30:e1220-32.^,4242. Wong LP, Tan SL, Alias H, Sai TE, Saw A. Psychological consequences of the delay in the Silent Mentor Programme during the COVID-19 pandemic: perspectives from family members of silent mentors. OMEGA (Westport) 2021; [Online ahead of print].. Regarding place of death, 87 took place in hospitals, 41 in nursing homes, 18 in intensive care units, 12 at home, nine in the coronavirus ward, four in general ward, two in a hospice, one at the location of accident, one in a psychiatric hospital, one in a sheltered house and one in a government isolation facility. The location of the other deaths was not specified in six articles ³⁷37. Tay DL, Thompson C, Jones M, Gettens C, Cloyes KG, Reblin M, et al. "I feel all alone out here": analysis of audio diaries of bereaved hospice family caregivers during the COVID-19 pandemic. J Hosp Palliat Nurs 2021; 23:346-53.^,3838. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583.^,4141. Hernández-Fernández C, Meneses-Falcón C. I can't believe they are dead. Death and mourning in the absence of goodbyes during the COVID-19 pandemic. Health Soc Care Community 2023; 30:e1220-32.^,4242. Wong LP, Tan SL, Alias H, Sai TE, Saw A. Psychological consequences of the delay in the Silent Mentor Programme during the COVID-19 pandemic: perspectives from family members of silent mentors. OMEGA (Westport) 2021; [Online ahead of print].^,4646. Cardoso EAO, Silva BCA, Santos JH, Lotério LS, Accoroni AG, Santos MA. The effect of suppressing funeral rituals during the COVID-19 pandemic on bereaved families. Rev Latinoam Enferm 2020; 28:e3361.^,4747. Mohammadi F, Oshvandi K, Shamsaei F, Cheraghi F, Khodaveisi M, Bijani M. The mental health crises of the families of COVID-19 victims: a qualitative study. BMC Fam Pract 2021; 22:94..

Synthesis of findings

From the 14 articles included in the meta-synthesis, two descriptive themes were elaborated: “Pre-death experiences: abandonment” and “Post-death experiences: distances” and one analytical theme called “Pandemic grief: lonely and unresolved”. These themes are interrelated. According to the selected studies, the pandemic significantly affected grief experiences, since it created situations that had previously been unusual, such as: the demand of social isolation in the face of the threat of infection, restrictions on hospital visits, communication mediated by technologies, and alterations or suspensions of farewell rituals. In this context, the process of illness and death, intersecting with the pandemic can be understood from two distinct moments, before and after death, which are permeated by suffering arising from situations of abandonment and isolation.

Pre-death experiences: abandonment

The studies described the COVID-19 pandemic as a state of exception in which people (with or without symptoms of the disease) avoided hospitals due to the drastic increase in infected patients. The bereaved family members from the studies reported that, since the beginning of the pandemic, they had concerns about other healthy relatives, relatives already hospitalized due to other health conditions, and also older relatives, especially those residing in nursing homes. There is a constant concern about viral contamination, even in studies in which deaths were not detailed or did not occur due to COVID-19 ³⁵35. Guité-Verret A, Vachon M, Ummel D, Lessarde E, Francoeur-Carron C. Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic. Int J Qual Stud Health Well-being 2021; 16:1996872.^,3737. Tay DL, Thompson C, Jones M, Gettens C, Cloyes KG, Reblin M, et al. "I feel all alone out here": analysis of audio diaries of bereaved hospice family caregivers during the COVID-19 pandemic. J Hosp Palliat Nurs 2021; 23:346-53.^,4141. Hernández-Fernández C, Meneses-Falcón C. I can't believe they are dead. Death and mourning in the absence of goodbyes during the COVID-19 pandemic. Health Soc Care Community 2023; 30:e1220-32.^,4242. Wong LP, Tan SL, Alias H, Sai TE, Saw A. Psychological consequences of the delay in the Silent Mentor Programme during the COVID-19 pandemic: perspectives from family members of silent mentors. OMEGA (Westport) 2021; [Online ahead of print]..

Studies in which the deaths occurred due to COVID-19 ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715.^,3838. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583.^,3939. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81.^,4040. Selman L, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: a thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med 2021; 35:1267-76.^,4343. Chen C, Wittenberg E, Sullivan SS, Lorenz RA, Chang YP. The experiences of family members of ventilated COVID-19 patients in the intensive care unit: a qualitative study. Am J Hosp Palliat Care 2021; 38:869-76.^,4444. Hanna JR, Rapa E, Dalton LJ, Hughes R, McGlinchey T, Bennett KM, et al. A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic. Palliat Med 2021; 35:843-51.^,4545. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355.^,4646. Cardoso EAO, Silva BCA, Santos JH, Lotério LS, Accoroni AG, Santos MA. The effect of suppressing funeral rituals during the COVID-19 pandemic on bereaved families. Rev Latinoam Enferm 2020; 28:e3361.^,4747. Mohammadi F, Oshvandi K, Shamsaei F, Cheraghi F, Khodaveisi M, Bijani M. The mental health crises of the families of COVID-19 victims: a qualitative study. BMC Fam Pract 2021; 22:94.^,4848. Cordero Jr DA. Sákit Pighati and Pag-asa: a pastoral reflection on suffering during the COVID-19 pandemic in the Philippines. J Relig Health 2021; 60:1521-42. indicate that, from the moment of diagnosis, the bereaved family members of the infected relative (who later died) expressed concerns about the worsening of the disease, associated with the unpredictability of the future: “I had a bad feeling after he tested positive. His breathing wasn’t good at all. I started to worry that this was the beginning of the end” (spouse of the deceased, death caused by COVID-19) ⁴⁴44. Hanna JR, Rapa E, Dalton LJ, Hughes R, McGlinchey T, Bennett KM, et al. A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic. Palliat Med 2021; 35:843-51. (p. 846). In these cases, it is possible to notice that the separation between bereaved family members and the infected relative begins with the hospitalization. From the moment of diagnosis, the bereaved family members reported feelings of guilt, with concerns about the inability to protect the infected relative and about the possibility that they themselves were vectors of transmission of the virus to the infected relative who later died. “I spent a lot of time with my friends and did not follow isolation measures. I keep thinking, reviewing events, ruminating about the death of my father, telling myself that I could have passed the infection to him” (child of the deceased, death caused by COVID-19) ⁴⁷47. Mohammadi F, Oshvandi K, Shamsaei F, Cheraghi F, Khodaveisi M, Bijani M. The mental health crises of the families of COVID-19 victims: a qualitative study. BMC Fam Pract 2021; 22:94. (p. 3).

Reports of isolation and helplessness were widely described in the studies, as family members of people diagnosed with COVID-19 faced difficulties in obtaining medical care for themselves and their infected relatives. Among the limitations of care, there is a focus on the lack of personal protective equipment, the lack of professionals in hospitals and the isolation of patients, implying a less constant monitoring of clinical conditions. “He was lying alone. And they [nursing staff] were allowed to go into his room for two minutes three times a day” (child of the deceased, unspecified cause of death) ³⁹39. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81. (p. 775). Moreover, the impossibility of visiting infected relatives that were at hospitals or nursing homes emphasized the situation of detachment and a feeling of powerlessness, arising from the challenge that there was little they could do to assist in the care. “It’s a cocktail of sensations, there’s everything, sadness, anger, frustration, anxiety. You don’t know what to do. You’re bound hand and foot” (son of the deceased, death caused by COVID-19) ⁴⁵45. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355. (p. 6).

The perception of health care at this critical moment relied, mainly, on the establishment of clear and direct communication with the health team, which occurred mostly by telephone calls. Since hospital visits were limited during the pandemic period, health professionals were the main − and often only − means of contact with hospitalized relatives who later died (due to COVID-19 or other causes). Contact with hospitalized relatives and relatives in nursing homes occurred mainly via technologies (phone calls, video calls, or message exchanges). “They [nursing staff] sent us a photo. The fact that they made this effort despite all the hectic and busy time is very special” (child of the deceased, unspecified cause of death) ³⁹39. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81. (p. 777).

The inability to contact health professionals regularly and the inconsistency of information about the hospitalized relative constituted a great source of anguish, since they contribute to the exclusion of the bereaved family members regarding medical decisions. “They didn’t call back (...) You can’t just leave people like that in ignorance, (...) waiting for a phone call (...) It’s inhuman to do that” (son of the deceased, death caused by COVID-19) ⁴⁵45. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355. (p. 5). “How am I going to make decisions if I’m getting different stories?” (unspecified relationship, death caused by COVID-19) ⁴³43. Chen C, Wittenberg E, Sullivan SS, Lorenz RA, Chang YP. The experiences of family members of ventilated COVID-19 patients in the intensive care unit: a qualitative study. Am J Hosp Palliat Care 2021; 38:869-76. (p. 872).

While acknowledging the difficulties faced by health professionals, bereaved family members highlighted their fundamental importance: “their commitment is breathtaking” (unspecified relationship and cause of death) ⁴⁰40. Selman L, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: a thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med 2021; 35:1267-76. (p. 1272). Demonstrations of empathy and acceptance by the health teams were fundamental for the family members during the hospitalization of their relatives. Important points to be highlighted were: availability during telephone conversations, explanations about the health situation and about everyday routines during hospitalization, use of understandable (less technical) terms, follow-up of protocols with transparency and responsibility, sharing photos and videos, intermediation of video calls and audio exchanges, and commitment to keeping the hospitalized family member company and communicating messages, especially at critical moments and during the final moments. “When we asked the nurse to stroke his arm or his forehead, to tell him we were there, I think she did do it (...). Even a doctor told us, the night when he died, ‘Don’t worry, I’m going to stay with him, I’m going to tell him that you’re here’” (sister of the deceased, death caused by COVID-19) ⁴⁵45. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355. (p. 6).

Such care by the health teams contributed to the bereaved family members feeling less helpless. However, the impossibility of accompanying their sick relative during hospitalization, the high dependence on the health team to maintain contact with the hospitalized relative before death, and the impossibility of being present at the time of death are the main factors adding to the feeling of abandonment when experiencing loss. Bereaved family members in the studies reported feeling abandoned by the health teams when they came across difficulties in care and communication. In addition, they reported intense suffering arising from the impossibility of sharing the last moments with the deceased relative; not being able to offer comfort, say and hear last words, fulfill last wishes, offer dignity, or even perform religious practices such as prayers, vigils, or preparation of the body.

The reports from bereaved family members describe, once again, a feeling of guilt in the face of physical distance and the consequent conclusion that they abandoned their deceased relatives at the time of death. The concern with the relative dying alone is a constant in the studies. “My father died all alone, [...] he was even abandoned for three months, isolated from his family, [...] it’s horrible! (...) He knew what was happening [...] but that does not replace the emotional emptiness he must have felt” (daughter of the deceased, unspecified cause of death) ³⁵35. Guité-Verret A, Vachon M, Ummel D, Lessarde E, Francoeur-Carron C. Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic. Int J Qual Stud Health Well-being 2021; 16:1996872. (p. 5).

Post-death experiences: distances

The death was followed by further moments of loneliness, as the bereaved family members suffered the loss of a relative without being able to be with other people due to social isolation measures. “Losing someone is itself very complicated, but to mourn alone is the most unfortunate and scariest thing I have ever experienced in my life” (granddaughter of the deceased, death caused by COVID-19) ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715. (p. 705). Studies where deaths occurred due to COVID-19 or other causes indicate that the previously discussed feeling of abandonment remains after the death of their relative; bereaved family members reported feeling abandoned as a result of the lack of contact with close and significant people. “We experienced a total isolation. No one from outside was allowed toenter our premises by police (...). Dying alone is a complicated thing, but it is more complicated when you are left to grieve alone” (brother of the deceased, death caused by COVID-19) ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715. (p. 706).

According to the studies, solitary bereavement experiences were also related to changes in farewell ceremonies, which did not happen or were radically altered due to the deaths being caused by the coronavirus as well as other causes. Health and safety guidelines not only kept bereaved family members away from their dying relatives but also kept them away from the deceased’s body. “I was not able to carry my mother’s coffin to the graveyard. The closed box also prevented me from seeing her face for the last time” (son of the deceased, death caused by COVID-19) ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715. (p. 703).

Specifically with the deaths caused by the new coronavirus ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715.^,3838. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583.^,3939. Becqué YN, Geugten W, Heide A, Korfage IJ, Pasman HRW, Onwuteaka-Philipsen BD, et al. Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: a qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021; 36:769-81.^,4040. Selman L, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: a thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med 2021; 35:1267-76.^,4343. Chen C, Wittenberg E, Sullivan SS, Lorenz RA, Chang YP. The experiences of family members of ventilated COVID-19 patients in the intensive care unit: a qualitative study. Am J Hosp Palliat Care 2021; 38:869-76.^,4444. Hanna JR, Rapa E, Dalton LJ, Hughes R, McGlinchey T, Bennett KM, et al. A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic. Palliat Med 2021; 35:843-51.^,55. Oliveira WA, Oliveira-Cardoso EA, Silva JL, Santos MA. Impactos psicológicos e ocupacionais das sucessivas ondas recentes de pandemias em profissionais da saúde: revisão integrativa e lições aprendidas. Estud Psicol (Campinas) 2020; 37:e200066.^,4646. Cardoso EAO, Silva BCA, Santos JH, Lotério LS, Accoroni AG, Santos MA. The effect of suppressing funeral rituals during the COVID-19 pandemic on bereaved families. Rev Latinoam Enferm 2020; 28:e3361.^,4747. Mohammadi F, Oshvandi K, Shamsaei F, Cheraghi F, Khodaveisi M, Bijani M. The mental health crises of the families of COVID-19 victims: a qualitative study. BMC Fam Pract 2021; 22:94.^,4848. Cordero Jr DA. Sákit Pighati and Pag-asa: a pastoral reflection on suffering during the COVID-19 pandemic in the Philippines. J Relig Health 2021; 60:1521-42., there were many negative impacts associated with the treatment of the bodies, the use of plastic bags and the sealed coffin generated perceptions associated with dehumanization and disrespect for the deceased relative: “He was treated like a piece of dead meat, he was taken naked, without clothes, they washed him down with disinfectant and he was put in a black bag. It was heart-breaking” (daughter of the deceased, death caused by COVID-19) ³⁸38. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583. (p. 5). Furthermore, the impossibility of performing religious rituals and paying respects was also a source of suffering. “It is a moral obligation to give the ritual bath to the deceased person, wrap the body in a shroud, and offer the funeral prayers. But unfortunately we were not able to do such things for our grandmother” (granddaughter of the deceased, death caused by COVID-19) ³⁶36. Hamid W, Jahangir MS. Dying, death and mourning amid COVID-19 pandemic in Kashmir: a qualitative study. OMEGA (Westport) 2020; 85:690-715. (p. 703).

Despite the existence of alternatives such as the online transmission of ceremonies in which many people could watch and mourn the body virtually, studies highlight that the impossibility of being in contact with the deceased were experienced by the bereaved family members as a “stolen moment”, since “for a civilized society, such as ours, these rituals are important. In a classic death, you can accompany the deceased... But, here, we’re missing some fundamental steps in the system!” (husband of the deceased, death caused by COVID-19) ⁴⁵45. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355. (p. 7).

In this context, the studies highlight the difficulty of assimilating the reality of the loss, since the contact with the death of the relative was experienced with detachment during the pandemic. “There is a feeling of, of non-ending that haunts me” (daughter of the deceased, unspecified cause of death) ³⁵35. Guité-Verret A, Vachon M, Ummel D, Lessarde E, Francoeur-Carron C. Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic. Int J Qual Stud Health Well-being 2021; 16:1996872. (p. 7). Studies point to a death whose reality is difficult to understand and accept. “Until recently, I still believed she was still in the nursing home. My grandmother had underlying conditions but she was fine and... not having seen it with my own eyes when she died I find it hard to think that she is not there” (granddaughter of the deceased, death caused by COVID-19) ³⁸38. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583. (p. 5).

Moreover, according to the studies an unresolved death contributed to the sense of unreality of the loss, making it “hard to grieve. Sometimes, I tell myself she will come back, it’s not possible, we didn’t bury her” (daughter of the deceased, death caused by COVID-19) ⁴⁵45. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355. (p. 7). Amid the limitations of in-person meetings and traditional farewell ceremonies, studies point to attempts to make sense of the loss. In addition to the importance of the support from the health team during hospitalization and online transmissions of funeral ceremonies after death, studies report the search for further closeness to the loss, such as the creation of alternative methods of saying goodbye. “I was given the day and the time of the cremation. That, in itself, was ultra important: it gave us a moment to share collectively. We said, ‘At 4 o’clock, we must all stop what we’re doing to think about him, it’s a way of being together’” (daughter of the deceased, death caused by COVID-19) ⁴⁵45. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay E. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units in France. JAMA Netw Open 2021; 4:e2113355. (p. 7).

In this context, expressions of condolences offered online, on instant communication apps and social networks, were important to bring grieving people together, reaffirm support and share feelings: “I feel your pain... Hang in there and I am here for you” (unspecified relationship and cause of death) ⁴⁰40. Selman L, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: a thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med 2021; 35:1267-76. (p. 1273). According to some studies, online sharing made it possible for mourners with similar experiences to recognize the scenario of loss and approach their own grief. “That [Facebook] group really made me feel like I belonged to a group of people who had been through the same drama as me and would understand me. We were all united because they had suffered mourning in the same way” (unspecified relationship, death caused by COVID-19) ³⁸38. Testoni I, Azzola C, Tribbia N, Biancalani G, Iacona E, Orkibi H, et al. The COVID-19 disappeared: from traumatic to ambiguous loss and the role of the internet for the bereaved in Italy. Front Psychiatry 2021; 12:620583. (p. 6). Finally, proximity to significant people (from a family, religious, or social context) was suggested by the bereaved family member as an essential support factor for coping with the distances present in grief during a pandemic.

Pandemic grief: lonely and unresolved

The findings of the studies selected for this systematic review shows drastic changes in grief experiences caused by the pandemic. In this context, the physical distance between the individual and the deceased relative, before and after the death, made it difficult for the bereaved to assimilate the progress of the illness, death, and their mourning process. The bereaved family members, affected by numerous restrictions (of in-person meetings, follow-up, or hospital visits, of farewell rituals), report their experience as being unreal. Alongside this, the pandemic adds obstacles to the grieving process, since, according to the bereaved family members, the absence of social support, the impossibility of rituals, the distance from the deceased, and the disrespect given in the treatment of the body contribute to this inconclusiveness. When loved ones died during the pandemic, grief was difficult due to restrictions. Thus, “suspended grief” during the pandemic can become a prolonged process, lacking closure and insoluble sorrow, difficult to experience in itself and marked by the perception of loneliness and difficulties in understanding and accepting the loss.

Discussion

This study aims to present a systematic review and meta-synthesis of qualitative studies on the experience of losing relatives during the COVID-19 pandemic. From the descriptive and analytical themes created, it is understood that the experiences of loss in the COVID-19 pandemic context were drastically marked by the demands of social distancing, restriction of hospital visits, and prohibition or restriction of funeral rites.

The scientific literature suggests that the grief experienced during the COVID-19 pandemic develops particular aspects stemming from this context of crisis. Social isolation − mostly adopted as a measure to contain the virus - negatively affects the grieving process since it impairs the exchange of social support and the monitoring of the deceased during the illness and after death ⁴⁹49. Carr D, Boerner K, Moorman S. Bereavement in the time of coronavirus: unprecedented challenges demand novel interventions. J Aging Soc Policy 2020; 32:425-31.^,5050. Lupion MRO. A Covid-19, o luto e a gestão do corpo morto pela prefeitura de Maringá-PR. Revista NUPEM 2021; 13:235-50.^,5151. Nabuco G, Oliveira MHPP, Afonso MPD. O impacto da pandemia pela COVID-19 na saúde mental: qual é o papel da atenção primária à saúde? Rev Bras Med Fam Comunidade 2020; 15:2532.^,5252. Sola PPB, Oliveira-Cardoso EA, Santos JHC, Santos MA. Psicologia em tempos de COVID-19: experiência de grupo terapêutico on-line. Rev SPAGESP 2021; 22:73-88.^,5353. Sola PPB, Garcia JT, Santos JHC, Santos MA, Oliveira-Cardoso EA. Grupo online de apoio aos familiares enlutados pela COVID-19 no contexto brasileiro. Psicol Saúde Doenças 2022; 23:390-7.^,5454. Sola PPB, Santos JHC, Santos MA, Oliveira-Cardoso EA. Fatores complicadores do luto durante a pandemia: perspectivas de familiares enlutados. Psicol Saúde Doenças 2022; 23:516-23.. Such impact, widely reported by the bereaved family members who participated in the reviewed studies, is in line with the indication that these experiences with loss, intensely affected in the context of a pandemic, affect the mental health of the population and lead to emotional, cognitive, and behavioral changes, possibly culminating in more intense and lasting grieving experiences ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.^,4949. Carr D, Boerner K, Moorman S. Bereavement in the time of coronavirus: unprecedented challenges demand novel interventions. J Aging Soc Policy 2020; 32:425-31.^,5050. Lupion MRO. A Covid-19, o luto e a gestão do corpo morto pela prefeitura de Maringá-PR. Revista NUPEM 2021; 13:235-50.^,5555. Fundação Oswaldo Cruz. Processo de luto no contexto da COVID-19. Rio de Janeiro: Fundação Oswaldo Cruz; 2020.^,5656. Sousa RC. Vulnerabilidade, vida precária e luto: os impactos da pandemia da Covid-19 no Brasil. https://acoescovid19.unifesspa.edu.br/images/Vulnerabilidade_vida_prec%C3%A1ria_e_luto_os_impactos_da_pandemia_da_Covid-19_no_Brasil_-_25_de_maio.pdf (accessed on 03/Mar/2022).
https://acoescovid19.unifesspa.edu.br/im... . The literature recognizes, above all, the restrictions and drastic changes that occurred in traditional funeral rituals (with a limit on the number of participants and reduced duration), which, according to the bereaved family members studied, generated suffering and hindered social support, which generated the impossibility of saying goodbye in two different moments, namely: in life, while the deceased relative was hospitalized, and in death, during the funeral rituals ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.^,4949. Carr D, Boerner K, Moorman S. Bereavement in the time of coronavirus: unprecedented challenges demand novel interventions. J Aging Soc Policy 2020; 32:425-31.^,5050. Lupion MRO. A Covid-19, o luto e a gestão do corpo morto pela prefeitura de Maringá-PR. Revista NUPEM 2021; 13:235-50.^,5656. Sousa RC. Vulnerabilidade, vida precária e luto: os impactos da pandemia da Covid-19 no Brasil. https://acoescovid19.unifesspa.edu.br/images/Vulnerabilidade_vida_prec%C3%A1ria_e_luto_os_impactos_da_pandemia_da_Covid-19_no_Brasil_-_25_de_maio.pdf (accessed on 03/Mar/2022).
https://acoescovid19.unifesspa.edu.br/im... .

Due to the possibility of transmission of the virus, especially with confirmed deaths from COVID-19, guidelines regarding the handling of the bodies recommended for professionals to forgo some procedures, such as autopsies or washing, and to use impermeable plastic bags to contain fluids ⁵⁷57. Ministério da Saúde. Manejo de corpos no contexto da doença causada pelo coronavírus Sars-CoV-2 COVID-19. Brasília: Ministério da Saúde; 2020.^,5858. World Health Organization. Infection prevention and control for the safe management of a dead body in the context of COVID-19. Geneva: World Health Organization; 2020.. The literature indicates that such care has a negative impact on the grieving process ⁵⁰50. Lupion MRO. A Covid-19, o luto e a gestão do corpo morto pela prefeitura de Maringá-PR. Revista NUPEM 2021; 13:235-50.^,5656. Sousa RC. Vulnerabilidade, vida precária e luto: os impactos da pandemia da Covid-19 no Brasil. https://acoescovid19.unifesspa.edu.br/images/Vulnerabilidade_vida_prec%C3%A1ria_e_luto_os_impactos_da_pandemia_da_Covid-19_no_Brasil_-_25_de_maio.pdf (accessed on 03/Mar/2022).
https://acoescovid19.unifesspa.edu.br/im... ^,5959. Crepaldi MA, Schmidt B, Noal DS, Bolze DAS, Gabarra LM. Terminality, death and grief in the COVID-19 pandemic: emerging psychological demands and practical implications. Estud Psicol (Campinas) 2020; 37:e200090.^,6060. Feitoza TBM, Cordeiro YL, Belmino MCB. Processo de luto no contexto da COVID-19 à luz da Gestalt-terapia: estratégias possíveis de enfrentamento. Revista IGT na Rede 2020; 17:65-77.; the bereaved family members studied in this systematic review described sensations of dehumanization and disrespect for the deceased relative due to the impossibility of paying final respects.

As alternatives to the traditional rituals which were carried out in person until the onset of the pandemic, the literature points to the use of social networks as a space where bereaved people can share experiences of loss, prayers, and pay tribute. In addition, funerals can be streamed online, allowing a virtual experience and enabling people to say farewell to their loved ones. The studies also refer to the creation of memorials in which photos and information about the innumerable deceased people can be shared ⁵⁰50. Lupion MRO. A Covid-19, o luto e a gestão do corpo morto pela prefeitura de Maringá-PR. Revista NUPEM 2021; 13:235-50.^,5656. Sousa RC. Vulnerabilidade, vida precária e luto: os impactos da pandemia da Covid-19 no Brasil. https://acoescovid19.unifesspa.edu.br/images/Vulnerabilidade_vida_prec%C3%A1ria_e_luto_os_impactos_da_pandemia_da_Covid-19_no_Brasil_-_25_de_maio.pdf (accessed on 03/Mar/2022).
https://acoescovid19.unifesspa.edu.br/im... ^,5959. Crepaldi MA, Schmidt B, Noal DS, Bolze DAS, Gabarra LM. Terminality, death and grief in the COVID-19 pandemic: emerging psychological demands and practical implications. Estud Psicol (Campinas) 2020; 37:e200090.^,6161. Ramos H. Beyond the grave on Facebook: life after death and mourning in the digital age. Observatorio (OBS*) 2015; 9:31-50.^,6262. Giamattey MEP, Frutuoso JT, Bellaguarda MLR, Luna IJ. Funeral rites in the COVID-19 pandemic and grief: possible reverberations. Esc Anna Nery Rev Enferm 2022; 26(spe):e20210208.^,6363. Walter T. New mourners, old mourners: online memorial culture as a chapter in the history of mourning. New Rev Hypermedia Multimed 2015; 21:10-24.. Thus, the bereaved family members in the selected studies recognized that there were online alternatives to the restrictions to in-person meetings and the performance of traditional rituals, which contributed to dignifying the deaths and accepting the loss. The use of technologies favored online communication with relatives during hospitalization, dignifying the dying process ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.^,6464. Fundação Oswaldo Cruz. Orientações às/os psicólogas/os hospitalares. Rio de Janeiro: Fundação Oswaldo Cruz; 2020.^,6565. Grincenkov FRS. Hospital and health psychology in coping with the coronavirus: need and proposal for action. HU Rev 2020; 46:1-2.^,6666. Wang SSY, Teo WZY, Yee CW, Chai YW. Pursuing a good death in the time of COVID-19. J Palliat Med 2020; 23:754-5. and allowing a closer relationship with health care teams, which may positively contribute to the grieving process ⁴⁹49. Carr D, Boerner K, Moorman S. Bereavement in the time of coronavirus: unprecedented challenges demand novel interventions. J Aging Soc Policy 2020; 32:425-31.. Despite recognizing the importance of humanizing the support toward the bereaved family members and those who died due to COVID-19 ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112.^,6666. Wang SSY, Teo WZY, Yee CW, Chai YW. Pursuing a good death in the time of COVID-19. J Palliat Med 2020; 23:754-5.^,6767. Cussó RA, Navarro CN, Gálvez AMP. El cuidado humanizado en la muerte por COVID-19: a propósito de un caso. Enferm Clín 2020; 31:62-7., none of the selected articles explored the announcement of death, contrasting with the indications that this is a key moment for the family of the deceased ⁶⁸68. Oliveira-Cardoso EA, Garcia JT, Santos LT, Santos MA. Comunicando más notícias em um hospital geral: a perspectiva do paciente. Rev SPAGESP 2017; 19:90-102.^,6969. Lucena PLC. Comunicação de más notícias e luto de familiares de vítimas da Covid-19: contribuições para enfermagem no contexto dos cuidados paliativos [Masters Thesis]. João Pessoa: Universidade Federal da Paraíba; 2021.^,7070. Fernandes MC, Oliveira RNG, Pessoni A. Innovation in the communication of bad news in palliative care in the context of pandemic Covid-19. ECCOM 2022; 13:195-211..

Finally, psychological follow-up, which was recognized by the literature as relevant in supporting the bereaved ¹³13. Ornell F, Schuch JB, Sordi AO, Kessler FHP. "Pandemic fear" and COVID-19: mental health burden and strategies. Braz J Psychiatry 2020; 42:232-5.^,5050. Lupion MRO. A Covid-19, o luto e a gestão do corpo morto pela prefeitura de Maringá-PR. Revista NUPEM 2021; 13:235-50.^,7171. Han N, Chen G, Li S, Huang F, Wang X, Ren X, et al. Impacts of the COVID-19 pandemic on the bereaved: a study of bereaved Weibo users. Healthcare (Basel) 2021; 9:724.^,7272. Aoun SM, Breen LJ, White I, Rumbold B, Kellehear A. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliat Med 2018; 32:1378-88., was rarely addressed in the studies selected for this systematic review. Therefore, the challenge presented for health services and managers is identified: to provide the population with spaces to support the bereaved considering this new pandemic scenario ⁷²72. Aoun SM, Breen LJ, White I, Rumbold B, Kellehear A. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliat Med 2018; 32:1378-88.. The articulation of actions among health services is necessary; they can contribute both to the care of individual grief and to the development of new ways of dealing with mass losses. In this sense, not only are follow-ups necessary during a moment of crisis but so are post-crisis strategies focused on the grieving processes that begin during the crisis, which may still present long-term repercussions. In this way, harm to the population’s mental health can be prevented ¹²12. Lopes FG, Lima MJV, Arrais RH, Amaral ND. A dor que não pode calar: reflexões sobre o luto em tempos de Covid-19. Psicol USP 2021; 32:e210112..

It is therefore important to have a national plan for mental health protection in a pandemic contexts that guides the care practices and contributes to the prevention of mental illness. The COVID-19 pandemic imposed onto several individuals the reality of family loss, allowing the particularities of the moment to be understood. Thus instigating the challenge of providing support to the bereaved ⁵⁶56. Sousa RC. Vulnerabilidade, vida precária e luto: os impactos da pandemia da Covid-19 no Brasil. https://acoescovid19.unifesspa.edu.br/images/Vulnerabilidade_vida_prec%C3%A1ria_e_luto_os_impactos_da_pandemia_da_Covid-19_no_Brasil_-_25_de_maio.pdf (accessed on 03/Mar/2022).
https://acoescovid19.unifesspa.edu.br/im... ^,7272. Aoun SM, Breen LJ, White I, Rumbold B, Kellehear A. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliat Med 2018; 32:1378-88..

Among contributions of this study to clinical practice, we highlight the importance of increasing communication between family members and patients, especially at the time of hospitalization; keeping constant communication between the team and the family members, especially at the time when patients’ clinical condition worsens; thinking of alternative forms of farewell rituals, before and after patients’ death, and referring their family members to a post-loss psychological evaluation, which may or may not be accompanied by a psychotherapeutic follow-up or grief counseling - a type of psychotherapy used to support people to cope with loss following major life events. One of this study limitations was the lack of key information on the bereaved families that was not available in the articles, such as the type of relationship between the participants and the deceased.

Future studies can be developed to further expand the understanding of the psychosocial impacts of the pandemic, including literature review research that includes, for example, mixed-methods studies or empirical, qualitative, or quantitative research aimed at expanding the data on the grief scenario of family members during the COVID-19 pandemic. The data can help to guide public policies and test intervention protocols to promote psychological support for bereaved family members after the loss.

Conclusion

The results suggested that social isolation, the impossibility of saying goodbye to loved ones, and the absence of farewell rituals were complicating factors in the experience of the bereavement elaboration. In contrast, the possibility of virtual communication, performing online ceremonies, receiving social support even at a distance, and communicating with the health care team were regarded as facilitating factors in the experience of loss. These findings should guide the planning of interventions, both pre- and post-mortem.

Acknowledgments

The authors thank the support from the Brazilian Coordination for the Improvement of Higher Education Personnel (CAPES) and Brazilian National Research Council (CNPq; research productivity fellowship PQ-1A).

References

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