Relatives’ lived experiences of losing a loved one to COVID-19: an interpretative phenomenological analysis

Abstract

During the COVID-19 pandemic, restrictions to prevent its spread were formed, thereby hindering patients’ relatives from maintaining contact with and visiting their loved ones, even saying goodbye at the end of life. This study aimed to gain an in-depth understanding of bereaved relatives’ experiences of losing a loved one to COVID-19. Eight in-depth interviews were conducted and analysed using an interpretative phenomenological approach. The results revealed two superordinate themes: (a) the lonely and painful loss and (b) the double crises. The relatives were oscillating between hope and despair. During the time of their loved one’s illness, they felt powerless, excluded, lonely and vulnerable. The death was unexpected, and it was painful to not be able to say goodbye in person or when the life support was terminated. Furthermore, the relatives were in crisis at the same time as the health care system was in crisis. Sometimes the relatives did not receive information, and they felt like bystanders waiting for answers. The health care professionals’ attitudes were of importance in supporting the relatives. If there was a lack of empathy and understanding for the relative’s situation, feelings of frustration and not being respected emerged. To meet relatives’ needs when losing a loved one during circumstances such as the COVID-19 pandemic, the healthcare system needs to develop routines pertaining to providing adequate information, supporting relatives’ need to say goodbye, and coping with ethical dilemmas, such as when there are insufficient life support machines for patients.

Keywords:

• COVID-19
• qualitative research
• lived experience
• interpretative phenomenological analysis
• bereavement
• relatives

Introduction

The death of a relative is one of the most negative experiences in life (Bratt et al., 2018). Death from COVID-19 where patients suffered both physically and mentally and lacked basic care, and the bereaved not being able to visit their loved ones during their hospital stay or to say goodbye, are further aggravating circumstances (Dennis et al., 2022; Feder et al., 2021; Selman et al., 2021; Ummel et al., 2022; Walsh, 2020). Additionally, the knowledge that a loved one died alone, not having a dignified and peaceful death (Wang et al., 2020), but rather, disrupted after-death rituals, have contributed to long-lasting grief processes (Dennis et al., 2022; Guité-Verret et al., 2021; Imber‐Black, 2020). Additionally, during the pandemic, people could not physically meet and share their grief with others; therefore, the bereaved could not receive the usual social support as pre-pandemic times when adjusting and coping with the loss (Goveas & Shear, 2020; Stroebe & Schut, 2021; Wallace et al., 2020).

Bereavement research during the pandemic has revealed two important factors in mitigating distress (Dennis et al., 2022; Feder et al., 2021; Selman et al., 2021) and helping relatives cope and adjust better with the loss of a loved one (Hanna et al., 2021): (a) clear communication from healthcare professionals (HCPs) regarding a loved one’s illness; and (b) involvement of relatives in decision-making, including facilitation of contact with the patient. However, owing to the high workload faced during COVID-19, HCPs were not always able to meet these needs. Many HCPs had to work in poorly-equipped facilities; consequently, they were often unable to meet patients’ needs or contact patients’ relatives to inform about ailing family members’ conditions (Ummel et al., 2022). The pandemic has brought unexpected and unprecedented challenges in society, and HCPs have faced moral and ethical dilemmas during this difficult time (Menon & Padhy, 2020). According to Menon and Padhy (2020), doctors were put into situations where they had to choose which patients would be put on ventilators. Their decisions needed to be based on who was more likely to survive rather than who needed the resources the most but was less likely to survive (Menon & Padhy, 2020). Relatives heard about these healthcare crises through media, rather than receiving the information they needed about their family member’s status or condition when they died (Ummel et al., 2022). In literature, there has been little focus on how patients’ relatives experienced these difficult moments, where their family members may not have been offered the healthcare they needed.

In Sweden, the COVID-19 strategy mainly focused on voluntary measures based on individual responsibility according to recommendations from the Public Health Agency (PHA; Folkhälsomyndigheten). The strategy focused on slowing the epidemic spread to avoid an overwhelming burden on the healthcare system and staff while protecting the most vulnerable—adults above the age of 70 and people in risk groups (Baral et al., 2021; Ludvigsson, 2020). When the World Health Organization declared COVID-19 a pandemic on 11^th March 2020, Sweden forbade gatherings of more than 500 people. This was changed to 50 people on 27^th March, and in November 2020, no more than eight people were allowed in a single gathering, with the exception of funerals where 20 people were permitted to participate (Ministry of Justice, 2020a, 2020b). In Sweden, public trust in the Swedish Government and the PHA is high, and most recommendations were followed by Swedish citizens (Swedish Civil Contingencies Agency, 2021).

In Sweden COVID-19 is no longer officially classified as a pandemic (Krisinformation, 2023). However, the pandemic has still had a significant impact over a prolonged period of time. Despite this, there is little information regarding how relatives who lost a loved one in COVID-19 were affected by the restrictions placed on them. Additionally, it is still largely unknown how the extreme number of patients that were in need for hospital care during this pandemic, together with a high mortality rate, affected the relatives. Therefore, exploration of relatives’ experiences of losing a loved one during the pandemic will provide valuable information as to how families managed and adapted to the situation when a family member died from COVID-19. Furthermore, an understanding of families’ needs during a pandemic is important for clinicians and policymakers in developing strategies to meet these needs in the future.

Aim

This study aims to gain an in-depth understanding of relatives’ experiences of losing a loved one to COVID-19.

Research questions

• How have relatives experienced the phenomenon of losing a loved one to COVID-19?

• How have relatives experienced the pandemic restrictions during the times a loved one was ill, the grieving process, and the funeral?

Materials and methods

Design

Owing to the relatively unknown phenomenon of losing a loved one to COVID-19, we wanted to explore the research aim of illuminating the subjective experiences of relatives who have experienced this phenomenon, from the participants’ perspectives. Therefore, we chose an ideographic, inductive qualitative research design and an interpretative phenomenological analysis (IPA; Smith et al., 2012). IPA is founded on Husserl’s phenomenology, and his statement “go back to the things themselves” to reach the lived experience. Additionally, the approach is based on Heidegger’s philosophy that the human is “being-in-the-world” and “in-relation-to-something.” IPA draws on ideography, which emphasizes the importance of individual experiences and meaning making, and hermeneutics which involves the interpretive process of understanding and making sense of the language used by the participants to describe their experiences. Thus, the aim of IPA is to examine, understand, and interpret individuals’ in-depth life experiences (Tuffour, 2017). We wanted to explore what lived experiences were specific to losing a loved one to COVID-19; therefore, our focus was not on more general bereavement experiences.

Recruitment and procedure

All participants were recruited through the Church of Sweden, by priests or deacons, except one participant who was suggested by another participant. The parish staff that held contact with the relatives in connection with their loved one’s funeral asked them if they wished to participate in the study. This invitation was asked between 4 to 13 months after the loved one’s death. If the relatives were interested in participating, the priest or deacon passed on the name to the interviewer EM, who then contacted the relatives.

Participants

In total, eight relatives participated, all of whom had lost a loved one to COVID-19. Therefore, the group of participants were reasonably homogeneous, and the sample was purposive, as recommended by Smith et al. (2012).

Data collection

Semi-structured in-depth interviews, conducted in Swedish, were used to collect data from the participants. To reach their lifeworld and lived experiences of the phenomena, bereaved relatives’ experiences of losing a loved one to COVID-19 were collected. The interview guide contained a few questions about the participants’ sociodemographic data and ten open-ended questions regarding the aim (Box 1). A pilot interview was conducted to evaluate the interview guide, and no changes were made; this interview was not included in the study as the interviewee had not lost her relative to COVID-19. The eight interviews lasted between 39 to 81 min and were audio recorded and afterwards transcribed verbatim. Data were collected from September 2021 to January 2022.

Box 1. Interview guide

Table

Can you tell me how it was for you when your (spouse / partner, parent/father-in-law) fell ill with COVID-19? How were you and your (spouse / partner, parent/father-in-law) affected by the restrictions that were in place during the pandemic when your (spouse / partner, parent/father-in-law) became ill with COVID-19? Can you tell me how it was for you while your (spouse / partner, parent / father-in-law) was ill with COVID-19? How were you and your (spouse / partner, parent / father-in-law) affected by the restrictions that were in place during the pandemic during the illness? What was it like when your (spouse / partner, parent /father-in-law) died? How were you affected by the restrictions that were in place during the pandemic when your (spouse / partner, parent / father-in-law) died? Can you tell me what the funeral was like? How was the funeral affected by the restrictions that were in place during the pandemic? How do you experience support in the grieving process from other people during the pandemic? If you have lost a loved one before, do you feel that it has been different for you in COVID-19? Open follow-up questions: What happened? How did it feel? Can you tell us more about your experiences? How did it go for you? How did you handle it?

Data analysis

The analysis was performed according to Smith et al. (2012) six steps. In the first step, the texts in each interview were read and reread to gain deeper understanding into each participant’s experiences. We attempted to slow down our understanding by being aware about our own pre-understanding and reading with an open mind.

In step two, descriptive notes and comments related to the text during the reading were written with a phenomenological focus, exploring the question of: what matters to the participants? In this stage, we noted anything of interest and attempted to identify specific ways in which each participant talked about the subject. Further, we looked at how the participants used their language and, together with similarities and contradictions in the text, more detailed and comprehensive observations emerged.

In step three, we read the notes, interpreted them, and summarized the meaning into emergent themes.

In the fourth step, the themes were abstracted to find superordinate themes.

Step five contained an analysis of all interview texts to find emerging themes, which were then compared to identify possible similarities and trends.

In the sixth and final step, we looked at patterns across interviews of all participants’ experiences. We ensured that the themes were grounded in the transcripts and transformed the themes to narratives supported by verbatim extracts from the participants. All authors conducted step one; step two through five were conducted separately by ASB, EM and IG; thereafter, all authors participated in step six of the analysis.

Pre-understanding

ASB and VC have a background as psychologists, EM is a psychotherapist and church deacon, and IG is a nurse anaesthetist. Common to our professions is to meet people with various life challenges and those who are bereaved. None of us have lost a loved one in COVID-19.

Ethical considerations

Ethical approvement was granted by the Swedish Ethical Review Authority (Dnr 2021-03698). In the research group we reflected on the Helsinki Declaration (World Medical Association Declaration of Helsinki, 2013). The participants had received both oral and written information about the study, aim, and the possibility to withdraw their written consent at any time. Except for EM, who had direct contact with the study participants during the interview process, all personal identifying information (such as names and addresses) was removed from the data to protect the privacy and confidentiality of the participants. The participants had contact information for both EM and a psychotherapist employed at the Church of Sweden, in case the interview evoked thoughts and feelings that needed support.

Findings

The age of the participants (N = 8; 2 men, 6 women) was between 40 and 80 years old. Six participants had lost a spouse or partner, one had lost a parent, and one, a father-in-law. Two participants were working, five had retired, and one was on parental leave. All participants have been assigned codenames to protect their anonymity.

From the IPA analysis, we identified two superordinate themes, each with two subordinate themes (see Table 1).

Table 1 Superordinate and subordinate themes.

Superordinate themes	Subordinate themes
The lonely and painful loss	Oscillating between hope and despair The hardship of the last farewell
The double crises	Access to information or lack thereof Treatment from HCPs

The lonely and painful loss

Even though thousands of people in Sweden died during the pandemic, loneliness permeated the participants’ stories. Media were reporting the number of deaths every week, and through this information, the participants had a picture of what could happen if infected with the virus. However, when their loved one got infected with COVID-19, it still came as a shock. Some participants were hopeful that their loved one would recover, as they were regarded as strong or “young” or had received their first vaccination shot. Others were terrified from the start that their loved one would not survive.

Oscillating between hope and despair

Upon receiving the news that their loved had been infected with COVID-19, some participants were afraid that they would be infected as well. They experienced many feelings: anger towards those who might have infected their loved one, fear that their loved one may die, and sometimes, guilt. Participant Ove describes his agony:

Yes, it was difficult… I have blamed myself all the time that I was the one who infected her because I had COVID-19. In a slightly milder form, of course, but there have been thoughts that have been very difficult to overcome… Thanks to all the conversations I have had, I have come to understand that I cannot blame myself, because no one knows. No one can know whether it was me.

Several participants explained that at first, they did not think their loved one was seriously ill, and they had been hopeful that their loved one would return home in a few days. Some of the participants had themselves recovered without hospital care or had friends who had been admitted to hospital and had recovered; this gave them hope that their loved one would also be cured. The information they received from the authorities was that one vaccination shot would provide adequate protection and, if infected after this shot, the disease would be in a milder form. For Karin it was unreal that her “strong” husband would not make it. She described her thoughts when her husband got infected:

It will not get so serious for him, because you had heard on TV all the time that if you got one shot, you would not become seriously ill - or so // so I thought it would probably not be so serious for him. //

I was… I had this positivity within me… “yes, but he has got one shot of vaccine, so it is not so dangerous”, yes, I kept thinking that all the time, it will not get so serious.

The participants oscillated between hope and despair while their loved ones were ill. These oscillations were sometimes fast and at other times slow. Participants put hope in the staff’s message that it was common for COVID-19 patients to experience both, progress and setbacks. Participants’ everyday life became unpredictable and a constant wait for information about their loved one at the hospital. They felt powerless and excluded when they had no control over the situation, resulting in feelings of despair, loneliness, and vulnerability.

The experience that the loved one had returned home after they had been admitted to the hospital in the past for other illnesses, could also give hope. One participant described that early on, she thought that the treatment for COVID-19 would not work, and was overwhelmed by despair; similarly, when her loved one ended up on a respirator, it was as if all hope was lost. The staff’s hopefulness about the loved one contributed to increased hope, but if the staff appeared subdued, hope diminished and anxiety increased. At times, there was a sense of despair that the treatment would not work despite the staff’s hopes. Another reported feeling was that if the staff tries, there is still hope for recovery.

The inability to be at hand for their loved ones owing to COVID-19 restrictions was difficult for the participants. They experienced feelings of helplessness and grief, when they had to stand and watch their loved ones being taken away in an ambulance, or when they went to the hospital. Helen described this experience:

It is these feelings of powerlessness, above all, that you feel - yes, powerlessness and this sadness. Not being able to influence the situation and then being so controlled by something. This not being able to be there for someone who really needs it. You may feel lonely and vulnerable when you are ill. Then it is probably the closest ones you want to have at your side… But it was this powerlessness - that you are deprived of the right to be at hand.

One way to cope with their helplessness in daily life was to find a structure, such as a routine with a time their loved one or staff is to call. When participants had contact with their loved one, several described their attempts to be strong for their loved one’s sake. They tried to show that they were doing well, and that the loved one should not worry about how the family was doing, to give them the strength to recover. It was a struggle to maintain courage, and after these conversations participants often cried. Communication with their loved ones in the hospital often had to take place via video call or telephone. One participant, Lina, says:

Yes, we called each other on WhatsApp, using video calls then, but he had this mask on, so it was difficult to talk, and he had problems in breathing when he tried to talk. He also had the oxygen meter that measured oxygen in the blood, and they had told him, when it went below 90, he should stop talking. So, he was very stressed and was looking at that meter all the time. Then he stopped talking and breathed like this so that it would go up again.

The hardship of the last farewell

The disease could progress quickly and thus, the loved one’s illness and death could occur unexpectedly, and often came as a shock to the participants. The lack of preparation for death, the struggle to say goodbye, and participants’ absence at the time of death owing to the restrictions, gave rise to many difficult feelings, especially if the loved one had been young and healthy before they were infected. Several participants described that public information had led them to perceive no great risk of dying from COVID-19 if one did not belong to a risk group.

Participants had slightly different experiences before the loved one died, depending on whether it was possible for them to say goodbye. Some participants had been physically present when their loved one died. Others were allowed to say goodbye via digital means, and others still did not get the opportunity to say goodbye at all. There were feelings of sadness, anger, and helplessness. The staff’s treatment of the participants was crucial to their ability to cope with the loss of their loved one—those who perceived empathetic treatment from the staff found it easier to relate to their situation, whereas participants who felt uncared for during this vulnerable time, experienced greater difficulty in coping. For one participant, the death of their husband came as a shock to the participant who did not understand how serious his illness was, because when they separated from each other in the hospital, it was with the idea that he would come home any day. It was painful not to say goodbye and confusing not to get any further information about what happened to their husband. Doris cries and says:

We said a tender goodbye at the hospital before I went home, so I’m happy about that at least. I must hold on to that moment. I think now when it ended the way it did… yes but it was not goodbye as if he would go away forever.

Another participant explained that the doctor called and told him that his wife had passed away. He aggrieved that he was unable to go to the hospital as he had wished, and instead had to say goodbye in the morgue. Some participants bade a last farewell digitally; for Irene, the situation of seeing her deceased husband was unreal and confusing:

I saw him. It was very painful. It was so difficult. I do not want to see that picture. No. He should have come home.

In some cases, the participant was allowed to be present when the loved one passed away. It was a long and tiring process, both mentally and physically, because of the use of protective equipment and the heat in the room. For some participants, their situation became peaceful once the loved one had died.

Regarding the funeral, the restrictions allowing only a limited number of people to attend gave rise to many ambivalent feelings. Some participants had difficulty understanding these restrictions when the church rooms were so large; nevertheless, they accepted the circumstances. Several participants mentioned being relieved that not many people participated in the funeral, as it allowed them to talk to everyone who was present. Sigrid said:

“In a way, I thought it was good that there weren’t too many people present, and at the same time, when the service ended, everyone who wanted to, could come in and walk around the casket.”

Simultaneously, some participants described they found it difficult to decide who would attend. This meant, for example, that all family members and friends who wanted to attend were not allowed to do so. In some cases, the families split up into smaller groups when there were too many. One participant reported feeling as though the deceased did not get a dignified farewell when not all family and friends could attend.

The families, together with church staff, found different ways to say goodbye to their loved ones safely. One participant recalled family members and friends being allowed to come half an hour before the funeral, when songs were played including music their husband liked.

Since knowledge about the disease and infection was limited, much was required of the bereaved families to be allowed to say goodbye the way they wanted. For some participants, it was a family tradition to keep the coffin open; to do this, they had to obtain a certificate proving that there was no risk of infection, from the two hospitals where the deceased was cared for. This meant an administrative difficulty which created frustration.

The main social support for participants was from those closest to them, such as children or other family members, friends, or church staff. However, the restrictions complicated receiving this contact and support from others, making it difficult to meet in a natural way. One participant chose to be of help to others who were sad, which was a help to her. For some, faith in God also provided support in dealing with grief. The participants found different ways to deal with their grief, including engaging in practical activities, such as walking, yoga, and baking, or simply accepting what had happened. As expressed by Uno:

You have lived//you have learned so much through life//you have to digest even the most devilish things.

The double crises

Participants perceived the healthcare system to be in crisis as, at times, the staff had no time to answer questions and provide information. This came at a time when participants were already facing the crisis of a loved one’s illness and the oftentimes unclear and confusing prognosis. Particularly, those participants who had lost a loved one early on in the pandemic faced a lack of information surrounding the COVID-19 virus. Some participants experienced uncertainties about their loved one’s situation, whereas others were content with the care their loved ones received.

Access to information or lack thereof

Participants had different experiences regarding the information they received from HCPs. It was usually doctors who informed participants of the patient’s condition or prognosis by telephone. Several participants recalled receiving helpful information and being given the opportunity to receive answers to their questions. For example, one participant described how the doctor showed her pictures of healthy lungs and then of her husband’s unhealthy lungs, which increased her understanding of the seriousness of the condition. Some participants also recounted experiences of HCPs not having adequate time to provide information, and that the information was scarce or difficult to understand. One participant was promised that the doctor would call her, but after one year of her husband’s death, she was yet to hear anything and remained uncertain about what had happened to her husband. At times, the information that the participants received from HCPs could be difficult to handle, such as descriptions of the loved one’s anxiety or confusion. Karin had to persuade the HCPs of her need to visit her husband when he was worried:

He was very worried // I nagged and nagged that I needed to come and visit him // then they called later and said that I … that it was okay, that I was allowed to come and visit him, “but you should know that you may not recognize him, and he is slippery as an eel” // he had not been as calm as when I… they also saw the difference when I was there.

This excerpt reflects Karin’s difficulty in handling the confusing and negative information about her husband, and she felt a need to be present with him to provide support.

Treatment from HCPs

Participants’ experiences with treatment from the healthcare system were twofold. On the one hand, it was respectful, humane, and dignified. On the other hand, it could lead to suffering for both the loved ones and the participants. Difficult ethical dilemmas also arose where participants had to fight for their loved ones’ lives.

Participants highly appreciated when HCPs took the time to listen to them or call and tell them how their loved one was feeling. Other positive experiences included HCPs permitting participants to call their relatives when they wished to, and HCPs staying in the room when participants visited the hospital, which gave participants a sense of security. Another positive experience was when an HCP helped establish contact between a particular participant and a counsellor, when there was a need for additional support during their wife’s long hospital stay and serious illness. Some participants expressed that conversations with the doctor were clear, straightforward, and honest, and gave a positive impression. Lena’s experience was that the HCPs showed care for her when her husband’s life was coming to an end, both when the HCP called from the hospital, and at the hospital itself. Lena felt empathy and warmth, as she describes:

She said I would love to hug you and hold you a little, she patted me and rubbed my back.

Some participants faced the negative experiences of a lack of empathy and support from the HCPs. One participant was chocked and very afraid when the doctor expressed “the worst thing is that it is COVID-19.” Another participant felt that the doctor expressed himself in an unpleasant manner and swore, which the participant considered as disrespectful treatment and extremely upsetting for them whilst in crisis. Another participant described a phone call which hurt her deeply, wherein she called the hospital, and the HCP instructed her not to call, and that instead it was her daughter who should handle the calls. This elicited a feeling of uselessness in the participant and, in turn, immense sadness. Another HCP then told the participant’s daughter that the mother could call as much as she wants but she refrained from doing so, afraid of being rejected again.

Some participants expressed how sad, disappointed, and angry they were about the way in which their loved ones and sometimes even they themselves were treated. One participant recalled her father being sent home from the hospital in merely a t-shirt in the middle of winter. He was freezing and shivering from the cold when he came home and, after a short time, developed a fever and had to return to hospital.

Two participants reported that HCPs had wished to turn off the respirator for their loved ones. Both patients had also been moved between different hospitals to receive higher specialist care. The conversations of participants with their loved ones during their loved ones’ hospital stay had been difficult, and neither the participants nor their loved were treated ethically. For example, HCPs talked about difficult subjects in the same room as the anesthetized relative, where one HCP was overheard saying, “this will not work.” The participant’s experience was that this information came as a shock, and that the conversation ought to have taken place in another room.

Some participants also described the difficulty in seeing their loved one’s own reactions. The patient could become anxious when they were staying in hospital, at times away from family. Lina described being told that the staff would turn off the life-sustaining machine, against her and her husband’s will. She described the difficult conversation she had with her husband:

I asked him, “Do you have the strength to fight more or is it too hard? Do not think of us, we will arrange this in some way. If you no longer can stand it, just let go.” Then he shook his head. “Do you still have the strength to fight to get well? Do you really want to?” … Then he nodded. I talked to a nurse who had been there on Saturday night, and she said that they had to put him to sleep because he was so worried and almost panicked. So, they must have told him something.

Lina and the family were promised a last farewell while he was awake; however, by the time they arrived, he had been anesthetized and remained so until the end.

Discussion

This study aimed to better understand relatives’ experiences of losing a loved one to COVID-19. The participants’ lived experiences were summarized in two superordinate themes of which the first—The lonely and painful loss—had two subordinate themes: “Oscillating between hope and despair” and “The hardship of the last farewell.”

The second superordinate theme—The double crises—included two subordinate themes “Access to information or lack thereof” and “Treatment from HCPs.” The main findings show that participants felt lonely, and experienced a lack of follow-up after the loved one’s death. The relatives had different experiences regarding the information they received. Some participants had positive experiences regarding receiving information from HCPs and the PHA, while others received misinformation. Some ethical dilemmas were experienced by participants, contributing towards an additional burden during the difficult time of losing their loved one in COVID-19.

This study’s findings illustrated that loneliness was a lived experience for several participants, arising from being alone when their loved ones were in the hospital and being unable to stay in contact or visit them. Our findings that relatives worried about the loved one’s isolation at the hospital, and that they could not care for them in the manner they wished to, is in line with other studies (Feder et al., 2021; Hanna et al., 2021; Pauli et al., 2022). Participants oscillated between hope and despair while their loved ones were ill, and they tended to put hope in staff’s message that it was common that COVID-19-patients experience both progress and setbacks. Their daily life became unpredictable and a constant wait for information from staff about their loved one at the hospital. Participants experienced despair, vulnerability, and powerlessness owing to a lack of control over the situation. These results are in line with Mayland et al. (2021), who found that as much as 56% of patients’ relatives could not visit their loved ones during the last days of their lives. Our findings also found that some relatives experienced lack of information, empathy, and support from HCPs. Participants had to rely only on clinicians’ words via telephone calls, rising from the inability to gain information directly at the hospital because of the restrictions in place; this has been described in another study of bereaved individuals during the pandemic as well (Kentish-Barnes et al., 2021).

Death often occurred unexpectedly for the participants after a rapid progress of the disease, coming as a shock to the participants. A lack of preparation for death, the struggle to say goodbye, and absence at the time of death, owing to restrictions gave rise to many difficult feelings. Some participants described how important it was for both them and their loved one to meet in person when they had the opportunity. Some participants had the opportunity to say goodbye in person while others said the last farewell via digital means. There were also participants who did not get the opportunity to say goodbye at all. Guité-Verret et al. (2021) found that when relatives were unable to be present for their loved one at the time of death, they felt as though they had forsaken their loved one in this “essential passage” of life (ibid.). This lack of opportunity to say goodbye can be a traumatic experience (Pauli et al., 2022). Kentish-Barnes et al. (2021) found that for relatives who could visit their loved ones, it was of importance to see that they were treated as a human and not merely another COVID-19 case.

The findings of this study further stress the importance of relatives’ need for information and effective communication from HCPs, which has also been reported in previous studies (Dennis et al., 2022; Feder et al., 2021; Hugelius et al., 2021; Pauli et al., 2022). Information from HCPs was generally appreciated but at times found to be lacking in certain areas or difficult to understand for participants. This further emphasizes the need for follow up and support by HCPs. Although the results of our study show that the behaviour of HCPs could help in establishing a sense of security and provide an experience of empathy and warmth, disrespectful or neglectful behaviour, which also existed, could be upsetting or disappointing for participants. Some participants experienced difficult ethical dilemmas such as having to fight for their loved ones’ lives, or not being part of the decision-making process. According to Slettmyr et al. (2022), a well-informed relative can be a part of the decision-making process when the patient is in ICU and cannot speak for themself, and thereby act as an extended self of the patient. Wang et al. (2020) also emphasizes the need for communication when providing end-of-life care during the COVID-19 pandemic. Patients at a high risk of deterioration need to be identified and HCPs should discuss end-of-life options with the patient and their relatives (Wang et al., 2020)

In this study, some participants had unpleasant memories after digital meetings. As mentioned by Wang et al. (2020), digital meetings need to be supported and followed up by HCPs. Communication can be achieved through various media depending on policies regarding social distancing and other issues. Regardless, it is important to prepare the patient’s relatives for the state and sometimes also the appearance of the patient (Wang et al., 2020). Using digital means for meetings can increase relatives’ involvement in the patient’s life and allowing them to observe daily care at the hospital. However, digital technology could, at times, prove to be challenging for patients and relatives; moreover, in some instances, relatives may find it too burdensome to see their loved one’s condition (Feder et al., 2021; Hanna et al., 2021; Klop et al., 2021).

The restrictions during the pandemic led to social isolation, both at home and in public. This was no different for the participants of our study, who experienced loneliness and feeling of being abandoned after the loved one’s death and did not receive the support they needed. This corroborates the findings of Guité-Verret et al. (2021), who describe an experience as being cut off from others. This means that relationships with loved ones, friends, clinicians, or others were often unreliable at the times when relatives needed emotional, physical, and spiritual support the most (ibid.). Relatives could find this loneliness to be burdensome (Kentish-Barnes et al., 2021). This knowledge about the loneliness, vulnerability, and overwhelm experienced by relatives, during a time when the healthcare staff had an extreme workload, shows the need to develop routines in the future that help to care for relatives more effectively in similar situations. Klop et al. (2021) found that when family support teams maintain daily contact via telephone, relatives tend to feel that they have received support, answers, and information. However, when the telephone calls ceased after the loved one’s death, relatives experienced feeling that these were halted too abruptly, and they would have preferred a gradual reduction instead (Klop et al., 2021). Another way of supporting people during circumstances such as the pandemic, when HCPs are overloaded with work, could be following the initiative from Canada’s “Compassionate Communities” (Ummel et al., 2022). Here, bereaved individuals shared their experiences and supported each other online, which helped them decrease their feelings of loneliness and isolation.

Some ethical dilemmas were experienced by participants in our study. For example, some participants sensed feelings of guilt in case they had spread the coronavirus to their loved ones. Two participants were in a situation where HCPs wanted to turn off life support for their loved ones; one participant was terrified to make the decision, and one struggled to stop the process of turning the machine off. These participants had ended up in “Grenzsituationen” according to Jaspers’ philosophy. It is described as “extreme situations which mark the limits of one’s empirical existence with an uncertain future and which shake one’s sense of security, i.e. circumstances one cannot master” (Peach, 2008). COVID-19 has pushed both loved ones and their relatives to “Grenzsituationen” a situation where everything changes, and nothing can be done to avoid it. Furthermore, when onés existence is challenged, both death and guilt can be repressed to avoid reflections (Jaspers, 1963). However, this “Grenzsituationen” is a turning point, with no possibility of escape, and there is a need for the human to act in some way (Peach, 2008). One cannot prepare themselves and can only have suggestions on how to react in this situation. Whenever they decide to act, it will always have both short- and longer-term consequences regardless of choice of action (Jaspers, 1963). Therefore, it is of importance that HCPs are aware of those relatives and loved ones in “Grenzsituationen”, so that they know who needs to be listened to, together with support and understanding in this severe and overwhelming situation.

Methodological considerations

According to Smith et al. (2012), validity in IPA studies should be assessed with Yardley’s (2000) four principles: sensitivity to context, commitment and rigour, transparency and coherence, and impact and importance. These principles are used in this section as a benchmark to discuss strengths and limitations of the study. Sensitivity to context has been in mind since the initial development of the idea of this study, particularly owing to our tackling of a difficult subject and the ethical considerations that go along with it. Therefore, we always had the participants perspective in mind throughout the study and were reflecting on potential consequences for the participants during the entire process. Another factor that increased validity is that all authors had different academic and professional backgrounds, and they collaboratively contributed towards developing an understanding of the phenomenon studied. A limitation that may adversely affect validity is the fact that EM had not earlier conducted an IPA interview. However, she is accustomed to having an open mind during difficult conversations owing to being a psychotherapist, and she was also supported by ASB, an experienced interviewer and IPA researcher, and IG, who was experienced in qualitative interviews. Sensitivity has been of importance in the process of analysis and when writing the results, and we have reflected several times on our interpretation of data regarding interviews, literature, and our own pre-understanding, which increases the validity. Another possible limitation was that the interviews were conducted in Swedish, and the authors translated the themes into English, which might have affected some of the nuances in the content. The principle of sensitivity has a close relationship with commitment and rigour, referring to in-depth engagement in the subject and methodological skills and competence. EM has attempted to make the interview situation as comfortable as possible, to carefully listen to the participants, and to have a symmetric relationship. The participants are reasonably homogeneous; however, one participant had lost her father-in-law. Although the death of a father-in-law is different from losing a partner of parent, there were no indications that the grieving process of the participant who lost a father-in-law noticeably differed from the other participants’ experiences. Interviews were performed with a semi-structured interview guide and follow-up questions for when required. The interviewer showed empathy for the situation and participants’ responses. Two participants have heard our primary results and they considered our understanding to be in line with their experience, which increases validity. The third principle, transparency and coherence, shows validity for the method and article descriptions including clarity, transparency, and reflexivity. As per the fourth principle, impact and importance of the study, we hope that the participants’ experiences will be brought to the attention of HCPs and their organisations, and that this will contribute towards improved future care for bereaved individuals and for patients at the end of their life.

Conclusions and implications for future research

This paper presents findings pertaining to relatives’ needs in the scenario of losing a loved one in a pandemic. The importance of support, information, and follow-up was emphasized by the participants. Therefore, HCPs must acknowledge the importance of empathetic communication and regular support despite the demanding nature of the situation. However, further research is warranted in this field regarding similar situations. Moreover, it is important that relatives are able to visit their loved ones at hospital as far as possible, and be involved in their care and in decision making. Ethical dilemmas related to the care of loved ones emerged; therefore, future research should address HCPs’ prioritization of communication with patients and relatives to minimise these dilemmas.

Acknowledgement

We would like to thank all participants for sharing their experiences, as well as the priests and deacons in Växjö diocese, the Church of Sweden, for their support.

Disclosure statement

The authors have no conflicts of interest to report.