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https://doi.org/10.1177/26323524241275699 https://doi.org/10.1177/26323524241275699

Palliative Care & Social Practice

2024, Vol. 18: 1–14

DOI: 10.1177/ 26323524241275699

© The Author(s), 2024. Article reuse guidelines: sagepub.com/journals- permissions

Palliative Care & Social Practice

Understanding the needs for support and coping strategies in grief following the loss of a significant other: insights from a cross-sectional survey in Sweden Inger Benkel , Johanna Skoglund, Daniel Enstedt, Ylva Hård af Segerstad , Joakim Öhlén and Stina Nyblom

Abstract Background: Grief has previously been described in pathological terms, characterized by several stages. In the past three decades, new perspectives on grief as a reaction to the loss of a significant other have emerged. It shows that grief is an individual process based on circumstances surrounding the death and the bereaved person’s life situation, rather than being predetermined. Objective: The aim of the study was to show how grief is perceived by people who have lost a significant other, and it focuses on bereavement support, how the death affects the bereaved person’s living conditions, how the bereaved person deals with grief, and if grief is expressed differently depending on whether it was an expected death (ED) or an unexpected death (UED). Design: A cross-sectional design was used with data collected anonymously using an online survey with semi-structured answers and options for participants to add their own comments, and it was analyzed descriptively. Result: Support in grief was mainly given by family and friends, and the perceived need was primarily for emotional support or emotional support combined with practical support, and to a greater extent for UEDs and women. For some bereaved persons, health caregivers and religious institutions provided support outside their own network. Grief can affect how people socialize with others and change social relationships. People can deal with grief in social as well as religious ways in the company of friends, through everyday conversations, spending time in nature, and having a spiritual outlook on life, and with the help of pets. Conclusion: The results can contribute to an increased understanding of grief after the loss of a significant other and how grief affects the bereaved person’s life depending on whether it is an ED or a UED. There was a difference between the genders, with women perceiving a need for and receiving different forms of support and to a greater extent than men.

Plain language summary Understanding support and coping in grief

Grief has long been described as a mental health disorder and characterized by multiple stages. In the last three decades, research has shown new perspectives on grief as a normal reaction to the loss of a significant other. It has shown that grief is an individual process based on the circumstances surrounding the death, the bereaved person’s social life situation, different forms of support and how the bereaved person deals with their changed life situation. The aim of this study was to investigate what support in grief can look like and the coping strategies that are used. The grieving process can vary depending on how the death affects the bereaved person’s living conditions, how they deal with grief, and whether it was perceived as an expected death (ED) or an unexpected death (UED). The

Correspondence to: Inger Benkel Palliative Centre, Högsbo Hospital, Box 30110, Gothenburg 40043, Sweden

Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

Palliative Centre at Sahlgrenska University Hospital Region Västra Götaland, Gothenburg, Sweden [email protected]

Johanna Skoglund Palliative Centre at Sahlgrenska University Hospital Region Västra Götaland, Gothenburg, Sweden

Daniel Enstedt Religious Studies, Department of Literature, History of Ideas and Religion, University of Gothenburg, Gothenburg, Sweden

Ylva Hård af Segerstad Department of Applied IT and Centre for Person- Centred Care, University of Gothenburg, Gothenburg, Sweden

Joakim Öhlén Palliative Centre at Sahlgrenska University Hospital Region Västra Götaland, Gothenburg, Sweden

Institute of Health and Care Sciences and Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden

Stina Nyblom Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

Palliative Centre at Sahlgrenska University Hospital Region Västra Götaland, Gothenburg, Sweden

1275699 PCR0010.1177/26323524241275699Palliative Care and Social PracticeI Benkel, J Skoglund research-article20242024

Original Research

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study took the form of an online survey with data collected as anonymous semi-structured answers, with options for participants to add their own comments, and it was analysed descriptively. The results showed that support in grief was mainly provided by family and friends, regardless of whether it was an ED or a UED. For some bereaved persons, health caregivers and religious institutions provided support outside their own network. The participants mainly reported a need for emotional support and emotional support combined with practical support. Grief can influence how people socialize with others and lead to changes in social relationships. People can cope with grief in social and religious ways, by socializing with friends, and through everyday conversations, spending time in nature and having a spiritual outlook on life, and with the help of pets. The conclusions drawn from the results can contribute to a greater understanding of the bereavement of a significant other and how grief influences the life circumstances of a bereaved person in many ways.

Keywords: bereavement, coping, family, grief, support in bereavement

Received: 3 May 2024; revised manuscript accepted: 29 July 2024.

Introduction Historical notions of grief in pathological terms or as a mental disorder characterized by specific stages are still common, in particular in popular- ized discourses. In this old view, the final stage of the process, a “closure” of the relationship with the sick person should be achieved, ending the grieving process. This perspective has perpetu- ated the notion that the grieving process is the same for everyone, “one size fits all.”1–4 However, this view of grief is largely based on myth, poorly supported by evidence, and has been challenged by contemporary research.5,6 Over the last three decades, new perspectives on grief, as a reaction to the loss of a significant other, have emerged suggesting that grief is an individual and natural process based on the circumstances surrounding the death and the bereaved person’s life situation, rather than being predetermined.7–10 In the new view of grief, it is affected by all aspects of life, including physical, psychological, social, cogni- tive, and existential factors, as well as the cause of death and whether it was expected or not.11–15

It is argued that bereavement should be seen in terms of resilience to changes in life circum- stances, rather than likened to recovery from a mental disorder. 16–18 An individual’s capacity for resilience is based on their previous life experi- ences and intrapsychic development. Those expe- riencing bereavement can gain a different outlook on life based on their changed circumstances and new experiences.16,19 Some similarities can be found between how a bereaved person deals with

grief and how they cope with other upheavals in life and their strategies for doing so.20–22

Access to social support and a focus on the pre- sent is suggested as being key to an individual’s ability to handle difficult life events, such as a ter- minal disease or the loss of a significant other.20,23 The dual process is described as a strategy for coping with grief in which the grieving person alternates between a loss-oriented approach, when they focus on the loss, its consequences, and the emotions that accompany it, and a restor- ative approach, when their focus is beyond the loss, on what is to come.24 If the bereaved person is part of a family, the family as a whole grieves. “Family grief” affects the individual and vice versa.22,25 Religious coping distinguishes between collaborative, self-directing, and deferring coping styles. Collaborative religious coping involves an active partnership with the divine, seeking guid- ance and support. Deferring religious coping, on the other hand, involves relying on a higher power to manage the situation without active personal involvement, while the self-directing style includes active coping orientation, which emphasizes per- sonal agency, rather than traditional religious connection.26,27 Importantly, Pargament’s model can be integrated with other coping strategies, both religious and non-religious.

Support for people experiencing bereavement, both practical and emotional, is usually pro- vided by close family and friends and is often sufficient for the bereaved, and professional

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support is therefore not needed.28,29 In this con- text, family members include direct and indirect relatives as well as friends with a strong relation- ship or connection to the deceased. This can present some difficulties when it comes to defin- ing the network and who is available to provide support.28–30 The Irish Hospice Foundation has developed a bereavement pyramid that describes that few persons need support from profession- als in their bereavement process.31 Furthermore, the Internet and various social media platforms offer new possibilities for bereaved individuals to engage in online grief support communities, in which they can find social support from peers who share similar experiences of loss and grief.32–34

Despite the new perspective on grief, many pro- fessionals argue that grief can be considered a mental disorder, and the past perspectives on bereavement continue to influence the treat- ment and understanding of grief even today.35,36 This study is part of a broader project that aims to contribute empirical knowledge about how grief is expressed by people in Sweden who have lost a significant other. The article focuses on bereavement support and how death affects the living conditions of the bereaved person, how they deal with grief, and whether grief expresses itself differently depending on whether the death was expected (ED) or unex- pected (UED).

Method

Design The study uses a cross-sectional design with data collected anonymously from a web-based, semi- structured, mixed questionnaire, which also included the option for participants to add their own comments to the questions.37 In total, the survey comprised 54 questions related to grief fol- lowing the death of a significant other. This arti- cle is part of a broader project that includes reporting on 20 questions about support and cop- ing in bereavement and how death impacts the life circumstances of people experiencing bereave- ment. It also includes questions about helpful fac- tors when dealing with grief as well as measuring religious and spiritual practice and attendance. Through the survey, participants could provide reflections on sources of support when experienc- ing grief following the death of someone close to them.

Participants and recruitment Participants in the study were recruited in col- laboration with two civil society associations in Sweden, a bereavement support association and a pensioners’ association in West Sweden. To be included, participants had to be over 18 and have experienced the death of a significant other. They also had to be able to complete a questionnaire in Swedish.

Data collection An invitation to participate in the study was sent via a digital newsletter to members of the associa- tions. The invitation included information about the study, contact information for the research team, and a link to the web-based questionnaire. The questionnaire was open to participants between February and May 2022, and all responses were collected during this period. No follow-up was possible due to the survey being anonymous. The exact number of people who received the invitation is not clear, which makes it difficult to estimate the response rate for the questionnaire. No reminder about the survey was sent out.

Data analysis The data generated from the questionnaire were stored on secure storage provided by Sahlgrenska University Hospital and analyzed using descrip- tive statistics comparing similarities and differ- ences between outcomes based on ED versus UED. A descriptive analysis was conducted of the open-ended responses against the question top- ics. The most salient aspects of grief were described and compared against each other, and supporting quotes were linked.38,39 The reporting of this study conforms to the STROBE statement checklist (Supplemental Material).

Ethics On the understanding that the questions could provoke reflection on difficult feelings and thoughts, the announcement stated that the research team could, if necessary, help the partici- pants with reference to appropriate support. It also stated that participation in the study could be ended at any time, in which case the participant’s data would be automatically deleted. The partici- pants could also choose to skip questions in the survey, for example, if they found them painful to answer or if they did not apply to them.

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Results A total of 255 participants (181 women and 74 men) answered the survey, all of whom had lost a significant other 6 months to 5 years prior. None of the participants had experienced a loss less than 6 months prior. The age of the participants ranged from 22 to 91 and the majority were older than 65, meaning they were most likely retired (65 = 170). For more informa- tion, see Table 1.

The responses cover topics such as who provided support, need for support, impact of grief on life, social relationships, and help in dealing with grief.

Who provided support in grief Suggestions for various forms of support were provided by personal networks, healthcare pro- viders, and religious institutions. The majority of the participants felt that they received the most support from their family and friends, regardless of whether the death was expected or unexpected. More women than men felt that they received support. One woman, aged 68, stated that she had “received good support from [her] immediate family, children, siblings, and sister and brother-in-law.”

Participants who had experienced a UED of someone close were more likely to feel that they received support (UED 65% family, 48% friends) than those who experienced an ED (ED 30% family, 23% friends). Those who experienced a UED also received support to a greater extent from people outside their family and friends. Participants emphasized the significance of con- necting with other people who had experienced similar instances of grief, expressing the impor- tance of hearing about their resilience and first- hand accounts of their experiences (UED 48%, ED 15%). As one woman, aged 64, expressed: “Getting to meet other mothers who survived their grief was important to me. Seeing them with my own eyes and hearing them tell me about what they had been through was incredible.” Those who had expe- rienced an ED reported support from health social workers and registered nurses more fre- quently than those who had experienced a UED. For more information, see Table 2.

Perceived support needs in grief Participants who had experienced a UED had a greater need for support (83%) than those who

had experienced an ED (44%). Men did not expect support (UED 33%, ED 74%) to the same extent as women (UED 12%, ED 46%). Whether they had experienced an ED or a UED, the major- ity of participants, both men and women, felt that they received the support they needed (ED 71% and UED 61%).

The participants described a variety of different forms of support that were offered. They mainly reported needing emotional support (UED 38%, ED 25%) and emotional support combined with practical support (UED 43%, ED 20%). Emotional support in the form of conversation included individual conversations, either within their network or with a professional, or participa- tion in some form of support group for grief coun- seling. “My way of processing grief was by talking to family and friends as well as colleagues,” woman, aged 60. Those who had experienced a UED were twice as likely (64%) to report a need for emotional support combined with practical sup- port, including advice and information, compared to those who had experienced an ED (31%). The difference in the reported need for only emotional support was smaller between the groups, UED 36% and ED 25%, respectively.

In both groups, about 30% felt that they did not receive the support they needed and expected. This included, among other examples, practical support in daily life that did not materialize and people who did not call as expected. Some expressed expectations that the healthcare system would provide outreach activities, including information or referrals to other support organi- zations, or follow-up services for those experienc- ing grief: “I would have needed more practical support help with childcare. . . even practical things in the home like cleaning. . . I often just didn’t have the energy,” woman, aged 49. “Above all, I would have liked to have received more help from society with everything that needs to be taken care of when a significant other passes away, i.e. practical support with what needs to be taken care of, but also for coun- selling,” woman, aged 27.

Impact of grief on life circumstances With respect to the impact of grief on health, 71% of the participants who experienced an ED described their health as unchanged. Among those who experienced a UED only 38% stated that their health was unchanged. For the partici- pants who had experienced a UED, 61% stated

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Table 1. Characteristics of the study participants.

Variable Expected death (n = 134) Unexpected death (n = 121)

Participant background

Gender

Men 47/134 (35.1%) 27/121 (22.3%)

Women 87/134 (64.9%) 94/121 (77.7%)

Geographical area of residence

City 19/134 (14.2%) 29/121 (24.0%)

Large urban area 64/134 (47.8%) 36/121 (29.8%)

Small urban area/rural area 51/134 (38.1%) 56/121 (46.3%)

Education

Primary school 20/134 (14.9%) 12/121 (9.9%)

Upper secondary school 42/134 (31.3%) 35/121 (28.9%)

University 72/134 (53.7%) 74/121 (61.2%)

Employment

Employed 23/132 (17.4%) 58/121 (47.9%)

Sick leave 1/132 (0.8%) 5/121 (4.1%)

Retired 109/132 (82.6%) 61/121 (50.4%)

Student 2/133 (1.5%) 2/121 (1.7%)

Other 1/132 (0.8%) 2/121 (1.7%)

Living situation

Living alone 72/125 (57.6%) 52/108 (48.1%)

Cohabiting 53/125 (42.4%) 56/108 (51.9%)

Missing 9 (7%) 13 (10%)

Relationship to the deceased

Married/cohabiting/partner 71/133 (53.4%) 38/121 (31.4%)

Living apart 1/133 (0.8%) 3/121 (2.5%)

Child/stepchild 22/133 (16.5%) 29/121 (24.0%)

Parent/step-parent 19/133 (14.3%) 33/121 (27.3%)

Sibling 9/133 (6.8%) 12/121 (9.9%)

Relative 2/133 (1.5%) 5/121 (4.1%)

Friend 6/133 (4.5%) 0/121 (0.0%)

Neighbor 3/133 (2.3%) 0/121 (0.0%)

Other 0/133 (0.0%) 1/121 (0.8%)

Missing 1 (0.1%) 0 (0%)

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that their health had become worse or much worse, while only 22% of the participants who had experienced an ED described deteriorating health.

The impact of the change in life circumstances was evident for several participants on both the practical aspects of their everyday lives and their emotional well-being. Individuals who had previ- ously shared their lives with the deceased felt a profound sense of loneliness, grappling with the challenge of forging a new, solitary path and

envisioning an uncertain future. “Having lived with someone for a long time and suddenly being alone is extremely difficult. It takes a long time to get used to it. I feel lost and don’t really know what I want to do with the rest of my life,” woman, aged 57. Others described a contrasting experience, discovering new-found independence and seeking new expe- riences through travel, despite their loss. “I am more independent and have travelled more in the world than I think we would have if my husband was still alive,” woman, aged 60. Notably, among par- ticipants who experienced a UED, 57% needed

Table 2. Who do you feel has provided support in grief? (multiple answers possible).

Variable Gender

Men Women

Expected death Unexpected death Expected death Unexpected death

n = 47 n = 27 n = 87 n = 94

Close family/ significant others

5/44 (11.4%) 13/27 (48.1%) 33/85 (38.8%) 64/92 (69.6%)

Friends 4/44 (9.1%) 7/27 (25.9%) 26/85 (30.6%) 50/92 (54.3%)

Co-workers 0/44 (0.0%) 3/27 (11.1%) 9/85 (10.6%) 29/92 (31.5%)

Manager 0/44 (0.0%) 2/27 (7.4%) 4/85 (4.7%) 20/92 (21.7%)

Occupational health services

0/44 (0.0%) 1/27 (3.7%) 1/85 (1.2%) 5/92 (5.4%)

Support group 3/44 (6.8%) 8/27 (29.6%) 18/85 (21.2%) 39/92 (42.4%)

Others who share similar experiences

3/44 (6.8%) 9/27 (33.3%) 17/85 (20.0%) 48/92 (52.2%)

Health social worker

5/44 (11.4%) 2/27 (7.4%) 14/85 (16.5%) 10/92 (10.9%)

Psychologist 2/44 (4.5%) 4/27 (14.8%) 7/85 (8.2%) 21/92 (22.8%)

Psychotherapist 1/44 (2.3%) 1/27 (3.7%) 6/85 (7.1%) 12/92 (13.0%)

Registered nurse 2/44 (4.5%) 0/27 (0.0%) 2/85 (2.4%) 1/92 (1.1%)

Physician 0/44 (0.0%) 0/27 (0.0%) 1/85 (1.2%) 10/92 (10.9%)

Religious representative

2/44 (4.5%) 3/27 (11.1%) 4/85 (4.7%) 19/92 (20.7%)

Judicial representative

0/44 (0.0%) 0/27 (0.0%) 1/85 (1.2%) 2/92 (2.2%)

Other 1/44 (2.3%) 0/27 (0.0%) 2/85 (2.4%) 2/92 (2.2%)

Missing 3 (6%) 1 (3%) 3 (3%) 4 (4%)

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assistance in managing daily chores and main- taining their homes as a result of their grief; only 38% of those who experienced an ED reported the same. It was observed that women exhibited a greater need for practical support in their daily lives compared to men (women UED 68%, ED 28%; men UED 35%, ED 12%).

Most participants reported only a minor impact on their financial (ED 65%, UED 57%) and housing situation (ED 94%, UED 97%) after their loss. However, here gender differences emerged, with women experiencing greater nega- tive effects on their financial situation than men (ED men 11%, women 25%; UED men 14%, women 35%).

For most of the participants, religious activity and spiritual practices played a minor role. Approximately half reported belonging to a reli- gion. A further 18% identified as atheists and 21% as agnostics. A slightly lower proportion reported belonging to a religion or spiritual group (51%) than embracing some form of religious or spiritual belief (64%).

Some participants mentioned receiving religious support, primarily from support groups run by the Church of Sweden, priests, and deacons, although a few stated that these had not been helpful. Some distanced themselves from reli- gious representatives: “I did not want to talk to any priest or deacon,” a woman, aged 84. Others ascribed great significance to their religious faith: “I have lost faith in people. This experience has shown me how bad most of us are at taking care of each other. Without my belief in Jesus Christ, I would probably have been a mental wreck by now, deep in the darkest abyss,” man, aged 41.

The impact of grief on social relationships In some cases, grief impacted participants’ social relationships. For those participants who experi- enced an ED, 40% felt that grief had affected their social relationships with others greatly or in some way. For the participants who experienced a UED, 76% felt that their relationships were affected greatly or in some way. Most of the par- ticipants who experienced an ED (60%) did not experience any change in their social relation- ships. In contrast, the same was true for only a minority of participants who had experienced a UED (24%).

Socializing with others Grief can influence how people socialize with oth- ers. Most of the participants spent more time with family and friends after their loss, regardless of the nature of the death (ED 91%, UED 98%). Almost half of the participants, regardless of the nature of the death (ED 51%, UED 42%), stated that they socialized more with new acquaintances than before. More than half of the participants experienced that grief made it difficult to socialize with certain people, although this differed signifi- cantly between the two groups (ED 90%, UED 43%), and nearly twice as many in the group who had experienced an ED said that this was the case. This change may be due to the difficulty of meeting people with whom they used to socialize or that other people found it difficult to meet the bereaved person in the absence of the deceased in various contexts: “Friends with whom I used to spend a lot of time, and who are still together, I now rarely meet and no longer offer invitations. Now I spend most of my time with friends, old and new, and I’m happy with that.” Woman, aged 80.

About half of the participants in both groups (ED 47%, UED 51%) perceived that reactions from other people were mostly supportive. Some par- ticipants felt that there was no change at all in the reactions of other people, and this was nearly double for those who had experienced an ED (36%) compared to a UED (19%). Men, in par- ticular, stated that the reactions of others were unchanged (men ED 45%, UED 35%; women ED 30%, UED 14%). Many participants stated that they felt some people avoided them at some level (ED 61%, UED 74%). Very few partici- pants stated that they experienced intrusiveness from others (ED 13%, UED 21%).

Help to deal with grief Engaging with friends, everyday conversations, and spending time in nature stand out when it comes to strategies for coping with grief. As one wom