Loss of a Child during a Pandemic. A Mixed Method Study of Parents’ Experiences of Interference with Rituals and Grief

Abstract The COVID-19 pandemic has profoundly impacted the rituals and practices surrounding death, dying, and grief worldwide. This study examines how the pandemic has influenced grief and rituals of parents who have lost a child. Using an explanatory sequential research design, this mixed-methods study collected quantitative data through an online survey and qualitative data from in-depth interviews and open-ended survey questions. A total of 112 parents completed the survey, and eight parents participated in the in-depth interviews. The merged results demonstrated that the pandemic had a severe impact on all the rituals associated with the death of a child. However, most parents felt able to say goodbye to their child in the best possible way. The merged findings also show that most parents experienced a high level of grief after the death of their child, particularly mothers, whereby their grief was negatively impacted by pandemic restrictions and lack of social support. The viewing of the deceased child was associated with lower levels of grief, while upsetting viewings, establishing a digital memory page, not wanting a memorial, and conducting an alternative service were associated with higher levels of grief. Higher levels of grief, including unexpected death, female gender, lower educational attainment, and living in rural areas, were associated with higher levels of grief. Our findings highlight the need for follow-up care during and after a pandemic.


Introduction
The COVID-19 pandemic impacted rituals surrounding death and dying all over the world (Imber-Black, 2020).This article focuses on the rituals associated with the death of a child during the COVID-19 pandemic and considers the impact on the grief experienced by parents in a Norwegian context.Rituals, defined as ceremonial acts performed according to tradition or sacerdotal decree, serve important functions in cultures around the world (Engelke, 2019).In Norway, common death-related rituals include being present at the time of death, viewing the deceased's body, and conducting the funeral within the first week, usually followed by a memorial on the same day.These rituals confirm the finality of death, help people understand what has happened, reinforce societal values of community and unity, and provide social support to the bereaved (Mitima-Verloop et al., 2022;Rumbold et al., 2021;Søfting et al., 2016).
Despite the importance of death rituals, prior to the COVID-19 pandemic, little attention had been paid to the impact of pandemics on these rituals and the grief experienced by the bereaved (Mayland et al., 2020).Research conducted during the COVID-19 pandemic has shown that infection control measures led to significant changes in death related rituals (C.Y.-C.Chen, 2022;Mitima-Verloop et al., 2022).These changes included restrictions on visits to hospitals, mandatory use of protective equipment, limited opportunities to say goodbye, limitations on viewing the deceased's body, constraints on the number of mourners in funerals and memorials, and restricted social and physical support for mourners.These changes have been found to be challenging and burdensome for both the bereaved and professionals (Imber-Black, 2020;Power et al., 2022).
The impact of restrictions on ritual participation on grief is a topic of current interest and importance, particularly in light of the COVID-19 pandemic.While some studies suggest that limitations on and disruptions to rituals may contribute to prolonged grief and impaired daily functioning among the bereaved (Breen et al., 2022;Eisma et al., 2020;Gang et al., 2022;Neimeyer & Lee, 2022), others highlight the negative effects of unacknowledged (disenfranchized) losses and impaired social support resulting from such disruptions (Guit e-Verret et al., 2021;Scheinfeld et al., 2021;Zhai & Du, 2020).Nonetheless, some research has shown that mourners can create alternative rituals during the pandemic to cope with their loss (i.e., streaming via virtual platforms, use video chats, social media) (Mitima-Verloop et al., 2022;Scheinfeld et al., 2021).Watching a funeral through a screen, however, might not be the same as physically being part of enacting the ritual (C.Y.-C.Chen, 2022;van Schaik & Wojtkowiak, 2023).
The death of a child is one of the most stressful events experienced across cultures (Miller & Rahe, 1997), often resulting in prolonged and intense grief reactions that affect daily functioning (Dutta et al., 2019;Pohlkamp et al., 2019;Schorr et al., 2016;Wilcox et al., 2015).Parents who lose a child during the perinatal period often struggle to come to terms with their grief or to provide an identity for their child (Cacciatore, 2010;Malacrida, 1999;Pollock et al., 2020).Research on the COVID-19 pandemic suggests that parents experiencing perinatal death may encounter fragmented and impersonal care (Silverio et al., 2021), particularly with mothers coping without their partners at the hospital (Testoni et al., 2022).Moreover, the negative impact of limited social support and a lack of external acknowledgement of their loss, has been observed (Testoni et al., 2022).However, limited research has examined how restrictions of rituals during a pandemic may impact parents' grief.

Study aims and research questions
The overall aim of this study was to provide more knowledge of the impact of the pandemic on rituals performed following the death of a child and the parents' grief, to plan for future pandemics.We aimed to answer the following research questions: 1. How do bereaved parents perceive the impact of the COVID-19 pandemic on the situation surrounding the death, the rituals of viewing the dead body, the funeral, and the memorial service after losing a child? 2. What level of grief do the parents report and what is the connection between the rituals and their level of grief? 3. What is the parents' experience of the pandemic's impact on dying and death rituals, as well as the grief after having lost a child during the COVID-19 period?

Methods and materials
Research design To answer the research questions, a mixed-method study with an explanatory sequential research design was conducted (Creswell & Clark, 2017).In this design, the qualitative and quantitative data are collected, analyzed and interpreted separately.Then, the results are combined, using the qualitative results to explain and expand the quantitative results.This design draws on the strengths and minimizes the weaknesses of each method and hopefully yield a more complete and nuanced understanding of the studied topic.

Recruitment and participants
The participants were self-recruited through the major Norwegian NGO associations for bereaved parents and for parents of children with serious illnesses.Information regarding the study's purpose, with a link to an online survey, was posted on the organizations' websites.To create awareness of the survey, a short video was made to provide more information about the study.Parents could participate if they had lost a child during the pandemic, regardless of the type of death.In total, 133 parents opened the survey.However only 112 filled it in.Table 1 lists sample characteristics that show that a large majority were female and well educated.Most were occupied full-time and lived in an urban environment.Most parents had lost at birth or during pregnancy (77%), with only 14 percent of children surviving beyond the age of 2.
The vast majority (89%) of the participants experienced an unexpected death, and 53% of the children died in a hospital/institution.The number that died in institutions may be higher as parents may have perceived a death on the maternity clinic as non-institutional.Fewer than half (41%) of the studied parents had experienced the death less than six months previously, and all within the last 13 months.A clear majority (67%) lost in pregnancy or experienced a stillbirth.No one reported COVID-19 as the cause of death.
Participants in the qualitative part of the study were recruited from the quantitative sample to elaborate on the study phenomenon.Participants self-recruited and provided contact information, whereby the first author contacted parents to schedule an interview.Eight parents were included and participated in the in-depth interviews, including two couples, three mothers and one father.Four couples had lost a child from anticipated death from illness and one from sudden death by suicide; the sample represented various ages of the child at the time of death.

Data collection
Data collection was carried out between 8th March and 7th May 2021.

Quantitative data
The quantitative data were based on an online survey with the following content: 1. Parents' demographics (gender, age, education, occupational status, place of residence) and information regarding the child (age, type and place of death, time since death).2. A questionnaire with 129 items covering the rituals performed and how these were affected by the pandemic.Twelve items were obtained from Mitima-Verloop et al. (2021, 2022).For questions on participation, i.e., We had a viewing of our child at the hospital, yes/no categories were used.For questions relating to the parents' perception of the ritual, i.e., The duration of the viewing was satisfactory, the categories were "not at all," "somewhat true," "true" and "very true."For other questions such as, I have been able to say goodbye to my loved one in the best way possible, the categories were "not at all," "a little," "somewhat," "quite much," and "very much."For each of the rituals (viewing the body, burial/cremation, memorial) the parents rated the disturbance they experienced with the categories "very much," "much," "a little" and "not at all."Since few studies of rituals during a pandemic exist, 11 open-ended questions were included.3. The Inventory of Complicated Grief (ICG) was used to measure grief reactions (Prigerson et al., 1995).The ICG consists of 19 statements, e.g., "I think so much about the dead person that it is difficult for me to do things that I usually do," or "I take detours to avoid memories of the dead."The statements were scored on a Likert scale from 0 (never) to 4 (always), resulting in a sum score from 0 to 76.A cutoff of more than, or equal to, 30 was used, indicating that grief affects everyday life to such an extent that it reduces the quality of life and functioning (Iglewicz et al., 2020).

Qualitative data
The qualitative data collection was based on in-depth interviews.The interviews were performed digitally via "whereby.com,"a secure digital video platform.All interviews were conducted by the first author, an experienced professor in grief and child psychology, who had not met any of the participants prior to the interviews.Each interview focused on retrospective reflections, based on a semi-structured interview guide, with the main question: Can you please tell me how you experienced rituals related to the dying and death of your child during the pandemic and the impact this had on your grief?
Additional questions were asked to encourage elaboration on the parents' experiences.The interviews lasted between 40 and 45 minutes; they were audiotaped and were transcribed verbatim.To secure anonymity, the identity of all participants was masked.

Analyses of quantitative data
Statistical analyses of the quantitative data were performed by SPSS Version 25.Descriptive statistics (mean, standard deviations (SDs) or percentages) were used to describe the data, gender differences were examined with T-tests, differences in time since the loss were examined with Chisquare tests and Pearson's r was used for correlation between variables.A regression model in which Indicators of Complicated Grief (ICG) were regressed on several factors including the age of the child, time since death, whether death was expected or not, age and gender of the parent, education level, employment status (full-time, part-time, or on sick leave), location of residence (urban or rural), satisfaction with the rituals, and the effect of the Covid situation on the rituals.Due to missing information for some variables, multiple imputation was utilized to estimate the regression model.Mplus version 8.8. was used for this model.
A two-tailed p-value of < .05 was set as the significance level for all analyses.

Analyses of the qualitative data
The qualitative data consisted of 76 transcribed pages from the in-depth interviews and 21 pages of comments from the open-ended questions in the survey.These data were analyzed using Systematic Text Condensation (STC) (Malterud, 2012), where NVivo 9 software was used to code and sort information.Following the four steps in STC, authors four and six first read the transcribed interviews separately, to obtain a general impression of the data.The interviews were then re-read, and units of meaning were extracted separately and discussed until a consensus was achieved.The content of the interviews and the open-ended comments were then coded into units of meaning before the extracted codes were condensed into groups and subgroups.The two authors coded and analyzed the data separately to enhance validity, before they engaged in an analytical circle involving the data and the researchers' pre-understanding and context until a consensus was achieved.In the fourth step, the findings were compared with the interviews and the open-ended questions to ensure that the informants' expressed and intended meanings had been captured and that significant quotes had been extracted.

Ethics
The project was reviewed by the Regional Committee for Medical Research Ethics (REK), which concluded that it did not need permission (REK number 221726).The reason for this determination was that the primary focus of the study was to examine how the pandemic affected rituals, rather than to acquire new knowledge about health and illness.Therefore, the study was considered to be outside the Norwegian Act on medical and health research and not subject to REK's permission requirements.The participants were informed about the study through written information on the recruiting organizations' websites.Voluntary participation in the questionnaire and interviews was considered as informed consent.The study did not collect any identifying information, and the audiotaped interviews were transcribed without such information, after which the audiotapes were deleted.
The participants were informed about how excerpts would be used in anonymous form.All data were safely stored in line with the University of Bergen's routines.

Results
In the following, the quantitative and the qualitative results are presented separately before they are connected.

The influence on death and dying rituals
The first research question, based on the quantitative survey, concerned the way in which the bereaved parents perceived the pandemic's impact on being present at the time of death, the rituals of viewing the dead body, the funeral, and the memorial service.

Being present at the time of death
Most of the parents (61%) reported that the pandemic brought "very much" or "much" limitations regarding visits of family members and friends.

The pandemic's total disturbance on the rituals
The disturbance from the pandemic was most extensive for the memorial ritual.For this, 63% of the parents reported that the pandemic disturbed the ritual "very much"/"much," while 42% experienced high disturbance on the funeral and 34% on viewing the dead body.

Impact on viewing the dead body
Twenty-eight percent of the parents did not wish to have a viewing of their dead child, however, for those who did, the ceremony most often took place in a hospital or institution (49%), a chapel (36%), a funeral home (9%), or at their private home (6%).Most parents (67%) reported that they were able to conduct the viewing as they had wished, although with restriction on the number of participants (56%).During the viewing ceremony, more than half (54%) confirmed that they were not allowed to have physical contact such as giving or receiving hugs, due to restrictions.Moreover, parents reported that some invitees, were hesitant to attend due to fear of contagion (35%) or travel restrictions (46%).Nevertheless, despite these limitations, 92% felt that the viewing was helpful, and 96% expressed satisfaction with their decision to conduct this ritual.For parents with other children, 85% considered it important for the surviving siblings to see their dead sister or brother.All "true" categories were combined.

Impact on the funeral
Most parents (75%) reported that they undertook a funeral, while 25% opted for cremation.Approximately a quarter of the ceremonies (23%) were streamed digitally.While more than two thirds of participants (71%) were able to conduct the funeral according to their wishes, the vast majority (84%) experienced restrictions, primarily related to social distancing and lack of physical contact.Additionally, half of the bereaved reported decreased participation due to fear of contagion (49%) or travel restrictions (40%).Despite these challenges, most parents were still able to carry out the funeral as they had intended (71%), and nearly all (95%) were able to say goodbye to their child in the best possible way.

Impact on the memorial service
One third (34%) did not want to have a memorial after the funeral.For those who did proceed with a memorial service, a majority (85%) reported that the pandemic disturbed the event in various ways.The most commonly reported disturbances were the need to limit the number of participants (67%) and the inability to have physical contact (70%).Furthermore, a considerable proportion of invitees withdrew from the event due to fear of contagion (44%) or travel restrictions (40%).Some individuals found alternative ways to honor their loved ones, with 25% opting for an outdoor memorial service to circumvent the restrictions on indoor gatherings.
The parents' self-reported level of grief and its connection with rituals The second research question, also based on the quantitative survey, focused on the parents' self-reported level of grief and its connection to the rituals.
The participants' mean score on the ICG was 44.9 (SD ¼ 13.7; range 12-77, Cronbach's alpha¼ 0.91).Using a cutoff score of 30, 84% of the participants scored above this level.Women scored significantly higher than men (t (74) ¼ 2.86, p < .05),but only seven men versus 69 women answered these questions.Here, two of the seven men scored above the cutoff, while 62 of the 69 women did so.There were no significant differences between those who lost their child more than six months ago, versus those who lost their child less than six months ago (X 2 (1, N ¼ 75) ¼ 0.11, p ¼ .739).
Pearson's correlations between the various rituals and the ICG grief score showed that the viewing of the child was associated with lower grief scores (r (74) ¼ À.26, p < .01),while reminiscing on their viewing was considered upsetting and was associated with higher grief scores (r (62) ¼ .27,p < .01).Furthermore, establishing a digital memory page (r (74) ¼ .26,p < .01),not wanting a memorial (r (70) ¼ À.26, p < .05)and conducting an alternative memorial service (r (43) ¼ À.31, p < 05) were associated with a higher grief score.There was also a significant correlation between the ICG and the perceived need for support from mental health professionals (r (73) ¼ .47,p ¼ .01).
The regression results showed higher levels of ICG to be associated with unexpected deaths, however, with some higher uncertainty levels of the generalizability (b ¼ 8.69, b ¼ 0.19, p ¼ .060),for females (b ¼ 11.68, b ¼ 0.25, p ¼ .020),and for lower educational levels (b ¼ À6.75, b ¼ À0.25, p ¼ .021).Another somewhat more uncertain finding showed that parents who lived in an urban area had higher ICG levels than those in rural areas (b ¼ 5.84, b ¼ 0.21, p ¼ .061).Explained variance in this model was found to be 28.5%.
Around 60% of the parents experienced a negative impact on social support, due to the pandemic restrictions, while 13% experienced a positive impact.In addition, 90% expressed that they had missed physical contact, such as a hug or a handshake.
Parents' experiences of the pandemic's impact on rituals The third research question, which draws on the qualitative data, centers on the parents' experiences of the impact of the pandemic on dying and death rituals when losing a child.
Three main themes emerged as being most significant in understanding the impact of the pandemic on the participant's situation and rituals: (1) "The hospital stay was the worst," (2) "The pandemic influenced all the rituals surrounding the death of our child," and (3) "Bereavement in an abnormal, everyday life."Each main theme was further elaborated on using several subthemes, outlined in Figure 1.
"The hospital stay was the worst" Most participants who underwent a hospital stay before the child's death, experienced the greatest impact of the restrictions during this phase.This was particularly evident in the limitations imposed on the number of visits and social contacts, as described in the first subtheme (1a), "Nobody could visit."The restriction that pregnant women could not bring their partners or that only one parent was allowed to stay with their child caused the most distress among participants: it was very frustrating.I was the mum and I had been with him for months; I was not allowed to stay with him!( … ) That's the most painful ( … ) those weeks I didn't get ( … ) due to the pandemic.( … ) I'm very hurt and bitter.(A mother) However, some parents were permitted to remain with their child "off the record," yet this arrangement was deemed problematic and undignified, as they were required to "hide" in their child's room.Furthermore, visiting restrictions drastically limited the number of visits from siblings, grandparents and other relatives, resulting in a lack of social support and relief to ease their care burden.These limitations also had significant ramifications for the sick child and the parent, such as the closure of school or play areas and reduced interaction with other children, parents, and healthcare professionals.Most participants believed it unjust to be subjected to stringent restrictions, while healthcare professionals were not always subject to the same constraints and could freely move in and out of the hospital.
However, the second subtheme (1b), "Easing of restrictions around the death" revealed that most participants experienced that there were fewer restrictions surrounding the death of their child.Often on the parents' own initiative, this meant that close family members came and bid farewell to the child.Some parents experienced limited or no assistance from the hospital staff, while others had positive experiences with facilitation from the staff: We were quickly notified that the corona-restrictions had been lifted for us.We got to stay in the delivery room until we were ready to go home.The midwife picked up our family at the hospital's entrance and followed them to our room.(A mother) "The pandemic influenced all the rituals surrounding our child's death" The second key theme that the informants experienced was that the pandemic impacted all rituals to varying degrees.The first subtheme (2a), "Limited opportunity to arrange a viewing of our child's dead body," elaborated on the perceived impact on viewing the body.While most parents were able to see their dead child, some were not.Parents who lost a child neonatally or through stillbirth often did not have the opportunity to, or chose, not to view their dead child's body or arrange a viewing for family and friends: It was only us as parents who participated in the viewing.[We] felt that there were no other alternatives and that it was all a bit chaotic.We were never asked if we wanted others to participate.(A parent) Other parents arranged a viewing for family and friends, which were typically held either in the hospital room, hospital's chapel, or a church.The viewings were subject to certain limitations, including restrictions on the number of attendees, limited physical contact, and comprehensive testing.
While some families opted for multiple viewings, others faced the challenge of having to select who to invite, a task that was deemed distressing.Only one of the interviewed families chose to take their deceased child home, allowing for visits by family and friends in the days preceding the funeral.
The second subtheme (2b), "Planning and conducting the funeral was challenging but went well," indicated that the parents experienced several difficulties when planning and arranging their child's funeral.This was particularly with regard to restrictions on the number of attendees.Consequently, most parents had to make difficult decisions regarding whom to invite, resulting in a painful and emotionally demanding experience: We had to set limitations ( … ) for our friends' children ( … ) for our aunts and uncles ( … ) for the teachers ( … ) for our children's friends ( … ) and for some of our friends.Yes, that hurt, it hurt a great deal.(A mother) Other challenges included limitations on choosing a preferred church or chaplain, extra work relating to lists of participants, planning for infection control, and restrictions on the duration of the funeral.Moreover, many parents had to face the withdrawal of attendees from the funeral, due to travel restrictions, fear of infection, or even fear of taking a seat from another person.
The way in which families dealt with these restrictions varied among the participants.Some parents, especially those who had lost a baby, either did not arrange a funeral or opted for a very small ceremony.Some parents appreciated a more private ceremony, while others resolved the issue of restrictions by streaming the funeral and having several people present outside the church: In the funeral only 50 were allowed to participate.But outside the church there were hordes of people who had watched the streaming in their cars.We got a lot of messages from people who had 'been with us' digitally, both from here and from cities and countries far away.That was good to know.(A father).
The funerals were impacted by various infection control measures, including pre-testing, hand sanitation, and social distancing.Nevertheless, parents articulated that the most challenging aspects of these measures was the inability to offer or receive physical comfort through hugs or handshakes.Some parents opted to disregard these restrictions.Despite the limitations imposed upon the funeral proceedings, most parents reported that the ceremony was emotionally comforting, although immensely sorrowful, allowing them to bid a dignified farewell to their child.
The third subtheme (3c), "Memorial only for the closest families," showed that the parents experienced severe limitations in organizing memorials due to the pandemic restrictions.Although many parents found it hard to exclude some individuals from the memorial, families employed various strategies to address this issue.Some families opted for a longer funeral service, which included speeches and the sharing of memories typically included in the memorial, taking place during the funeral.Others arranged outdoor memorials, while some families chose not to hold a memorial.Nevertheless, the most prevalent form om memorialization was limited to private memorials at home and only attended by close family members: We had a memorial in the garden.I think we were a few too many because then, it was a max. of 20 ( … ).In a way it was ok with the corona and the limitations, as we had a very good excuse not to invite many ( … ) it was ok to keep it small.(A father) "Bereavement in an abnormal everyday life" This third main theme pertained to the parents' experience of the pandemic, which significantly impacted their grief, especially because the parents had to live under stringent pandemic restrictions following the rituals: It is the first time I've lost a child ( … ) but it has been difficult for us to return to normal everyday life because the ordinary every day is abnormal.(A father) The first subtheme (3a), "I missed social support but got time to grieve," portrays an atypical daily existence, marked by social distancing, remote work-arrangements, lockdowns, and rigorous measures for testing and controlling infections.In general, most parents expressed that the absence of social support, resulting from the pandemic, was the most challenging aspect to navigate: You feel lonelier ( … ) you cannot be with others or give a hug to those you love ( … ).It's been hard to not get those respites with visits from family and friends.You need to process your loss and to share your grief and thoughts with others, that's an important part of it.(A mother).
Parents coped with this situation in diverse ways.Some parents utilized digital platforms and phone calls to connect with their families and friends, while others sought help from various organizations.Some parents defined the important supporters as their cohort and made arrangements to meet outdoors, while others provided feedback to hospitals based on their personal experiences.Despite these efforts, several parents reported experiencing social withdrawal, as people avoided them due to the pandemic.They also received less practical help and physical contact, leading them to believe that their loss was less visible.The degree to which parents received professional help and support varied greatly, with some parents reporting high levels of satisfaction, while others received no follow-up from professionals.
The second subtheme (3b), "Important days and anniversaries impacted by the pandemic," highlighted the significant impact of pandemic-related restrictions on various commemorative events and activities, including ceremonies for lowering urns, observance of a child's birthday or day of death, and the first holiday without the child.Pandemic restrictions such as social distancing measures, lockdowns, and concerns about infection, also profoundly affected the parents: Then it was lowering the urn ( … ).For me it meant a lot to carry and lower the urn ( … ) as a last gesture from mum.But the church worker did not allow me to do so because of infection control.That was very traumatic for me, and I refused to go ( … ).But at last, he gave in … .(A mother)

Connecting the quantitative and qualitative results
The quantitative and qualitative results from the study are connected in Figure 2 and featured in the discussion section.

Discussion
The results of this study provide important insights into the impact of the COVID-19 pandemic on parents who have lost a child.The merged results show that the pandemic negatively impacted parents' experiences of rituals and grief after losing a child.They uphold the importance of rituals in confirming death, understanding the situation, and providing social support, as highlighted in prior research (Mitima-Verloop et al., 2022;Rumbold et al., 2021).The disruption of these rituals due to the pandemic was found to be highly challenging and burdensome for the bereaved, as has been documented previously (Imber-Black, 2020).The study also reveals that parents who lose a child during a pandemic are especially vulnerable, compounding the already devastating effects of the loss itself, which is widely recognized as one of the most stressful events that people can experience (Miller & Rahe, 1997).

Severe impact on hospital deaths
We found that the COVID-19 pandemic had severe impacts on hospital deaths and palliative care for dying children and their families.Parents reported that hospitalization was the worst phase, as both the ill child and the family were significantly affected by the hospitals' restrictions related to visits and social support, as well as the child and parents' isolation every day at the hospital.This is concerning since pediatric palliation is familycentered and focused on the child's and family members' holistic needs and quality of life (Benini et al., 2022).The pandemic restrictions negatively influenced the palliative care for the dying child and his/her family, leaving the parents at risk of impaired coping and long-term health difficulties (Malcolm & Knighting, 2021;Verberne et al., 2019).We also found that several pregnant women received devastating news about their child or experienced stillbirth or loss of a new-born without their partners or next-of-kin present.Similar to the findings of Testoni et al. (2022), this highlights how the pandemic restrictions limited access to essential support and resources for families.The restrictions also meant that family members and friends could not take part in the short life of the child, resulting in less acknowledgement of the child's existence and adding to the disenfranchized grief of parents.

Severe impact on rituals
While all rituals were affected, the study findings indicate that the degree of impact from the COVID-19 pandemic differed.
Results revealed that viewings of the child's dead body were largely dependent on parents' creativity and initiative and were hampered by social restrictions.Despite this, most parents arranged a viewing and found it helpful for engaging in grief tasks, such as acceptance of loss and emotional pain, which is consistent with prior research (Hackett et al., 2022).
However, a little over a quarter did not have a viewing, which was associated with more grief and may complicate the parents' grief process, increase loneliness, and result in less recognition of their grief by their social network (Cacciatore, 2010).
The pandemic had a severe impact on funerals, as families had to prioritize who to invite, observe social distancing, and were prevented from having any physical contact, which was described as the worst aspect.Consequently, these parents were unable to receive the protective buffering effect of social support and physical contact, as reported in previous studies (Dreisoerner et al., 2021;Rogers-Jarrell et al., 2021).However, parents reported being able to say a dignified farewell to their child despite the digital contact with funeral agencies, the increased workload in planning the funeral, infection regulations, social distancing, testing, and limited numbers attending the ceremony.The study findings suggest that participants created alternative rituals, such as streaming of the funeral, outdoor services, and virtual or prolonged services, to compensate for the lack of physical presence, which is supported by prior studies (Mitima-Verloop et al., 2022;Scheinfeld et al., 2021).Grief rituals had become more flexible and digital even before the COVID-19 pandemic (Rumbold et al., 2021), however the extent to which digital participation in rituals compensates for the loss of physical presence is unknown.
Memorials had the greatest impact, with most participants only arranging a memorial for their close family at home.Memorials are crucial for sharing grief, memories of the deceased, and optimizing social support (Rumbold et al., 2021).As social support is vital for parents' coping over time (K.Dyregrov & Dyregrov, 2008;K. Dyregrov et al., 2003), the lack of or limitation in the number of memorials may interfere with the parents' grief.
Overall, the study highlights the significant impact of the COVID-19 pandemic on the various rituals related to children's death and underscores the need for further research into how to provide support for parents during pandemics.

High grief scores
The grief experienced by parents in the aftermath of losing a child is often intense, and this was reflected in the extremely high grief scores of our study participants (Christiansen et al., 2014;Morris et al., 2019).One explanation for the high scores may be that almost all participants were female and although normal grief after the loss of a child usually involves immediate and considerable grief in both partners, mothers tend to react longer and more intensely than men (H.-H.Chen et al., 2021;A. Dyregrov & Matthiesen, 1987;Vance et al., 1995).In addition, our study included mostly parents who had lost a child within the last six months, while the rest had experienced their loss within 13 months of the death.
Normal grief after the loss of a child often involves considerable immediate grief.We did not find any difference in the grief experiences between those who had lost a child within six months of participating in the survey and those who had experienced their loss more than six months ago, but still within the last 14 months.This highlights the intensity of grief over the first post-loss year.
It is possible that the multiple pandemic-related restrictions added to the parents' grief reactions (Scheinfeld et al., 2021).Rumbold et al. (2021) suggest that it is uncertain to what extent rituals assist mourners in adapting to a new everyday life without their loved ones, or whether disruption to these rituals may impair the parents' grief.However, our results shed light on some important factors that could contribute to this understanding, outlined in the following.

Important factors for high versus low scores
Firstly, we found that viewing the child's dead body was associated with lower grief scores.This finding emphasizes the need for healthcare professionals and funeral agencies to support and arrange viewings during a pandemic, as it may have a positive impact on parents' grief reactions.
Secondly, we found that not wanting a memorial, conducting an alternative memorial, or establishing a digital memorial page were associated with higher grief scores.While one possible explanation for this is that parents were too overwhelmed to undertake these activities, our study suggests that disenfranchized losses resulting from stillbirth or pregnancy may also be a contributing factor (Guit e-Verret et al., 2021;Neimeyer & Lee, 2022;Scheinfeld et al., 2021;Zhai & Du, 2020).Our findings on the higher level of grief associated with arranging an alternative memorial may reflect the fact that a high degree of parental grief increases the need for a memorial service, but it may also be that the service contributes to amplifying this grief.
Contrary to our own findings, Mitima-Verloop et al. ( 2022) discovered that 45% of those who had experienced bereavement found alternative rituals to be beneficial after losing mostly adult loved ones.It's more challenging to explain why creating a memorial page was linked to heightened levels of grief, but it's possible that this activity indicates more complex grief, characterized by a longing to preserve memories, and keep the child present in one's consciousness.
Thirdly, our study found a limited correlation between participating in rituals and the degree of grief reactions.While rituals are generally perceived as important for bereaved families, our study suggests that their impact on grief reactions and health problems beyond the first few months is not well established (Burrell & Selman, 2022;Mitima-Verloop et al., 2021;S ¸ims ¸ek Arslan & Bulduko glu, 2021).It should be noted, however, that rituals have broader functions than solely addressing the emotional aspects of grief.They can serve important social and cultural functions, such as recognizing the identity of the deceased and mobilizing social support (Castle & Phillips, 2003;Mitima-Verloop et al., 2022;Rumbold et al., 2021;Søfting et al., 2016).
Fourth, our study also found that grief scores likely reflected the combined effects of losing a child and the disruption of rituals due to the pandemic, which cut parents off from the support that would have been available to them in normal circumstances.The pandemic led to an abnormal daily existence, with "micro-losses" (McLaughlin, 2021) and fewer opportunities for balancing restoration-oriented coping and loss-oriented coping (Guit e-Verret et al., 2021;Stroebe & Schut, 1999).Although the absence of social support is generally associated with prolonged and significant grief reactions (K.Dyregrov & Dyregrov, 2008;K. Dyregrov et al., 2003), we did not find a correlation between social support and grief in our sample.However, given that almost all parents exhibited high grief scores, the chances of finding a correlation were limited.Additionally, our qualitative findings suggested that the pandemic may have provided parents with more time to grieve.
Fifth, the findings from the regression analysis indicate that several factors are associated with higher levels of grief, including unexpected death, female gender, lower educational attainment, and living in rural areas.These results are consistent with previous research, which has demonstrated that unexpected deaths often result in more complex and intense forms of grief compared to anticipated deaths (Kristensen et al., 2012).Additionally, prior studies have shown that women tend to report higher levels of grief than men, as described elsewhere in this article.
The association between lower educational levels and grief has been previously observed both before the pandemic (Milic et al., 2017;Nielsen et al., 2019) and during the pandemic (Selman et al., 2022).This finding highlights the potential role that education may play in how individuals process and cope with grief.
Moreover, the present study identified an association between higher levels of grief and residing in rural areas.This finding may reflect the impact of pandemic-related restrictions on rural communities, which may experience greater limitations on travel and social contact compared to urban areas.
The findings further highlight the significant impact of the pandemic on bereaved parents limiting their access to social support, respite opportunities, and physical contact.These findings are consistent with previous research on the impact of the pandemic on people who have lost loved ones (Harrop & Selman, 2022;Hooghe et al., 2021;Neimeyer & Lee, 2022; S ¸ims ¸ek Arslan & Bulduko glu, 2021), including the isolation, loneliness, and care challenges faced by families (Silverio et al., 2021).The study underscores the importance of social support and physical presence as crucial in times of crisis (Cohen & Wills, 1985), and the potential negative impact on physical and mental health when these resources are lacking, as documented in previous research (Bottomley et al., 2017;Villacieros et al., 2014).
The merged results also shed light on how rituals and grief had to adapt to a life-limiting pandemic situation, providing an important insight into how bereaved parents coped with the challenges presented by the pandemic.
Our study highlights the need for follow-up care for bereaved parents during and after a pandemic, regardless of whether the death is related to the pandemic.

Study strengths and limitations
The study presents several strengths, including the use of mixed methods, where the qualitative data provide valuable insights and a deeper understanding of the quantitative results.Another strength is the relatively large sample from a hard-to-reach population, from across rural and urban districts in Norway.These strengths enhance the study's validity and contribute to a more robust understanding of the topic.
The study recruited participants from various support associations and websites, and it is possible that the sample differs from other parents who have lost children.Members of support associations may be more resourceful and actively seek out information, but they may also be struggling with their grief.The participants in this study were a highly educated group, with up to 70% having a college or university education, indicating a resourceful group.Furthermore, most of the participants were mothers, and mothers tend to score higher than fathers on grief inventories.However, it is typically challenging to determine whether individuals who participate in surveys are better or worse off than those who do not.
It is important to note that the sample mainly comprised parents who had lost children during pregnancy or around the time of birth.Consequently, the results may not necessarily apply to parents who have lost older children, as these children may have had an identity outside the inner family and are acknowledged by the family's social network.Therefore, caution should be exercised when generalizing the findings of this study to parents who have lost older children or adult family members, particularly during the pandemic.
The employment of self-report survey methodology imposes limitations on the interpretation of findings.To ensure the accuracy of the numbers of individuals who experienced prolonged grief complications, the use of clinical diagnostic interviews would have been desirable.Furthermore, additional information regarding how pandemic-related restrictions affected the daily lives and social interactions of the participants would have provided more context for comprehending the disturbance in rituals.
The study was conducted primarily in March and April 2021, when Norway reintroduced invasive measures, with stricter regional measures in population-rich areas on March 15 and stricter national measures on March 23.It is possible that these circumstances may have influenced the participants' responses.

Conclusion
In conclusion, the COVID-19 pandemic has had a significant impact on the grief rituals of parents following the death of a child.Parents often felt alone in their grief due to the pandemic restrictions and restrictions imposed by the pandemic resulted in fewer opportunities for parents to receive the support and care they needed.The limitations on the number of attendees and physical contact have made rituals less personal and less comforting.While modern technology has enabled some degree of remote support, it seems unable to replace the emotional connection and comfort that physical presence provides.
While it is difficult to determine the direct impact of disrupted grief rituals on complicated grief reactions, our findings suggest that such disruptions are not necessarily associated with worse outcomes.Grief is a complex process that is influenced by various factors, and the experience of rituals is just one of them.However, our study did find that the adaptations and flexibility demonstrated by bereaved families, as well as the caring support provided by hospital and funeral staff, helped parents find meaning and comfort in the rituals they were able to have.Overall, our findings emphasize the importance of providing support and flexibility to bereaved families during times of crisis, and the need for further research to better understand the impact of disrupted grief rituals on parents and their children.When parents say a final goodbye to their child, they need the support and care of others, and pandemic restrictions can make rituals and goodbyes less than optimal.

Recommendations
The COVID-19 pandemic created an uncertain environment that required constant adaptation to new outbreaks and virus variants.As such, the following recommendations for future pandemics are ideal and may require further adjustments based on situational conditions: Both parents should be allowed access to hospital wards in the event of a life-threatening condition or illness affecting their child.It is crucial for parents to have the support of one another, their immediate family members, and hospital and funeral staff.Providing written advice on how to handle the dilemmas and choices that parents face when deciding who to include in rituals can help them cope with the demands of the situation.Parents need guidance on how to stimulate the social network's recognition of the child as a (deceased) family member to ensure the provision of social support over time.Municipalities can make facilities available to accommodate larger groups to allow more people to participate in funerals and memorials.Health personnel and funeral staff should provide information about and ensure contact with psychosocial follow-up resources and parent support organizations (NGOs).
These recommendations can improve support to parents who are dealing with a life-threatening condition, illness, or death in a child.However, given the uncertain nature of pandemics, it is essential to remain flexible and adaptable to changing circumstances.Iren Johnsen, PhD, is an associate professor at Center for crisis psychology, University of Bergen, Norway.Her research focus on grief and traumatic grief, adolescents, young adults, parental grief, grief support and health effects of bereavement.She defended her PhD thesis in 2016 with focus on loss of close friends.
Rolf Gjestad, PhD.Clinical psychologist at Center for Crisis psychology from 1994.Statistician at the Research department, Division of Psychiatry, Haukeland University Hospital since 2011, and assistant professor at Center for crisis psychology, University of Bergen, Norway, from 2020.Interests: factor-, multilevel and longitudinal models, structural equation modeling.
May Aasebø Hauken, PhD is professor at the Center for crisis psychology.She has a long clinical experience in cancer care.Her research mainly focuses on psychosocial consequences of serious somatic illness, children as next of kin, young adult cancer patients, child palliation and organization of cancer care.

FIGURE 1 .
FIGURE 1.The main findings from the qualitative data.
experiences with grief over time following child death due to terror.Part of National Program for Integrated Clinical Specialist and PhD-training for Psychologists in Norway.

Table 1 .
Demographic characteristics of participants.
aAs answering more than one category was possible, percentage is not reported.b Mean and range reported separately for those who died in pregnancy/stillbirth (P/S) separately from those who lived following birth (L).