The role of a death and grief festival in cultivating awareness of serious illness,death,and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities

Abstract

Background:

At different points in our lives, regardless of our age, gender, location, or socioeconomic background, we all face experiences of serious illness, death, and bereavement. Yet, these topics are often avoided in communities and are predominantly addressed within professional healthcare narratives and practices. In recent years, death and grief festivals have been planned to offer “ways in” to these topics via participatory, creative, educational, and cultural activities. In Belgium, the Vrije Universiteit Brussel (VUB) University hosted its first death and grief festival on the university campus, the Compassionate Week, as a part of the Compassionate University program.

Objectives:

This study aims to gain a deeper understanding of students’ and staff’s motivations for engaging in the Compassionate Week activities and their experiences of the activities they attended.

Design:

A qualitative descriptive research design was used to understand the motivations and experiences of students and staff who participated in the Compassionate Week activities.

Methods:

A total of 94 individual semi-structured interviews were conducted with students and staff.

Results:

A thematic analysis resulted in three overarching reasons for participating in the Compassionate Week activities: (i) to help with one’s own grief; (ii) to support friends or colleagues; and (iii) to learn about death, bereavement, and the support offered by the university. Additionally, three main types of experience were constructed from participants’ reflections on the activities. The activities (i) created openness to express and share experiences of loss and bereavement, (ii) encouraged compassion (i.e., reflecting on and acting upon the suffering of others), and (iii) raised awareness of serious illness, death, and bereavement as everyday experiences in school and work life.

Conclusion:

Our study suggests that death and grief festivals, such as the Compassionate Week, can contribute to greater emotional and practical support for students and staff confronted with the experiences of serious illness, death, or bereavement.

Keywords

Compassionate Week death and grief festivals Compassionate University

Background

Almost everyone will face serious illness, death, or bereavement at some point in their lives, yet many feel ill-equipped to navigate the emotional landscape of grief and loss.¹ Cultural reluctance to discuss death increased over the past decades, leaving talk about dying, bereavement, and grief as a specialist activity rather than an everyday occurrence.² This is particularly notable in the Global North, where the professionalization of death narrates it as an individual event rather than acknowledging it as a collective, shared reality.^3,4 As a result, many people find discussions on these issues upsetting or morbid.⁵ As Walter describes, rather than being an absolute “taboo,” conversations can be “shut down.”⁶ The reluctance to talk about these topics exacerbates the already challenging experience of bereavement, as many struggle with socially awkward, and maladapted responses from friends, colleagues, and health professionals who do not know how to offer appropriate support.^7,8 Research suggests that individuals who have engaged in conversations about end-of-life wishes, practical arrangements, and emotional expectations may experience fewer maladaptive manifestations of grief.⁹ In response, the compassionate communities model advocates for investing in building community capacity to understand grief, provide support, and reduce the stigma of death and bereavement.¹⁰ To address people’s discomfort in thinking and talking about these topics, it is suggested that opportunities to reflect on death and dying need to be created.⁴

In recent years, death and grief festivals have been increasingly planned in different places to offer “ways in” to these topics via participatory, creative, educational, and cultural activities. These festivals aim to create safe and inclusive spaces for communities to explore and reflect on loss, bereavement, and mortality, often through storytelling, art, workshops, and public discussions. Examples include the Good Grief Festival(s),^11,12 the To Absent Friends Festival,¹³ the Dying.series,¹⁴ the Compassionate Bruges’ Nodes City Festival (Knooppuntenfestival), and the Festivals of the Dead.^2,15 Despite the growing development of these initiatives, evaluations remain scarce and have primarily focused on assessing their reach and impact on attendees’ knowledge, attitudes, and practices through self-completed post-event questionnaires.^11,13,14 Available evaluation evidence suggests that these festivals facilitate spontaneous conversations about death, dying, and bereavement, with participants feeling more confident to talk about these subjects after attending the event.^2,11 Participants also reported a better understanding of how to offer support and an increased awareness of local support services.^11,13 However, there is limited understanding of attendees’ lived experiences and how these events engage community members, foster openness, and offer solace in the face of grief and bereavement.

Furthermore, the existing body of literature on compassionate communities highlights the unique role of schools in developing language – how to talk about death and grief – and enhancing confidence in addressing these topics as an integral part of everyday school life.^16,17 Educational institutions are intriguing settings as they combine the characteristics of both workplaces and educational settings. However, studies have shown that grief among students and staff is often “disenfranchised” due to it being unacknowledged or perceived as inappropriate in a context emphasizing productivity and high morale.^18,19 While individuals are often willing to offer support to peers or colleagues, this is often hindered by uncertainty about the appropriateness of offering assistance or mentioning the loss.²⁰ Prior studies have noted the importance of addressing this issue of appropriately supporting grieving individuals through public awareness campaigns and psychoeducation, alongside formal bereavement support in schools.^21,22 Initiatives like death and grief festivals can thus play an important role in normalizing these topics within school communities and building resilience in both students and staff.²³ Despite their potential benefits, there is a significant gap in the literature regarding the development and implementation of such festivals in the context of higher education. There is limited knowledge about whether students and staff would be interested in participating in these kinds of events. Moreover, educational institutions represent a different environment from neighborhoods where these festivals often take place. Higher education institutions often maintain a culture that emphasizes keeping a boundary between work and personal matters.¹⁸ The abundance of campus activities can also be challenging for students, as participation in initiatives addressing death and grief may seem at odds with the prevailing notion that student life is primarily about “having fun” and “getting a degree.”^20,23 However, given that informal (peer) support is the highest-rated form of support among students in higher education,²⁴ it is important to create opportunities for this support to flourish.

Against this background, the “Compassionate Week” was designed and implemented as a death and grief festival at the Vrije Universiteit Brussel (VUB) University in Brussels, Belgium. The Compassionate Week is one of the outcomes of the Compassionate University program, led by the Compassionate University core team, which is responsible for developing initiatives to promote support and compassion during times of serious illness, death, or bereavement within the university community. The Compassionate Week aimed to cultivate awareness and encourage open dialogue about serious illness, death, and bereavement through a diverse range of activities. This study aims to understand the motivations of students and staff for participating in Compassionate Week activities, as well as their experiences of the events they attended.

Methods

Study design

A qualitative descriptive research design, employing semi-structured interviews, was used to understand the motivations and experiences of students and staff who participated in the Compassionate Week activities.²⁵ To enhance the transparency of this study, O’Brien et al.’s²⁶ Standards for Reporting Qualitative Research (SRQR) were followed.

Study context

The Vrije Universiteit Brussel (VUB University), located in Brussels, Belgium, served as a case study. The university has an enrolment of approximately 22,000 students, of whom 58% are female and 42% male. Around 5000 students are international students, 52% of whom come from outside the European Economic Area. Furthermore, the VUB employs approximately 4000 staff members, comprising 26,000 academic staff (43% female, 57% male) and 1400 support staff (64% female, 36% male) (not including staff of the University Hospital which is a separate employer). In November 2019, VUB declared itself Europe’s first “Compassionate University,” emphasizing the importance of support and compassion during times of serious illness, death, and bereavement.²⁰ A leading coalition, comprising key stakeholders such as the Rectorate, Student Counseling Center, Human Resources Management, Marketing and Communication, and the VUB’s Compassionate Communities Centre of Expertise (COCO), works on translating this ambition into tangible practices. One of the notable outcomes is the development and implementation of the Compassionate Week in November 2023.

Design and implementation of the Compassionate Week

The Compassionate Week, held from November 13 to November 16, 2023, featured a total of 10 in-person activities. Additionally, two online activities (webinars) took place which were open to individuals beyond the university community. The 4-day festival was free to attend and open to all students and staff of the university. Approximately 230 people were registered participants in one or more activities of the Compassionate Week, excluding those who accessed the webinars, as these events are not included in the study. The complete program is available as a Supplemental File 1.

The preparatory process was decisive for the design of the Compassionate Week. From February 2022 to April 2022, individual interviews and focus groups were conducted with staff members (n = 26) and students (n = 21) to understand their experiences when confronted with serious illness, death, and bereavement at university, and the type of support they would like to receive from the university.²⁰ In June 2022, all participants were recontacted to gauge their willingness to participate in two follow-up sessions. Seven individuals, including five staff members and two students, agreed to take part in these sessions, taking place in October 2022 and January 2023. The sessions facilitated the identification of potential initiatives to be organized during the Compassionate Week, such as conversation cafés, workshops addressing peers and colleague support, and cultural events that use dance, music, and arts to portray the narratives surrounding death and grief. The proposed initiatives mainly centered around themes of grief and loss.

Subsequently, different entities showed their interest in assisting with the development and implementation of activities during the Compassionate Week. A research group from the university’s Languages and Linguistics department orchestrated the Poetry Workshop and Voices of Compassion – a literature night where students and staff could present poems and texts about grief and loss. Two student psychologists took charge of the workshop for student associations on grief support, and a staff member working for the Human Resources (HR) department, who is also part of the Compassionate University core team, worked out the Compassion@Work workshop, together with an academic from the VUB’s COCO. The Grief Studio was organized by KLAD – a student association known for its weekly creative gatherings. Additionally, the Compassionate Café, Compassionate Walk, Compassionate Cards, and Remembrance Tree were executed with the support of three external non-profit organizations (i.e., Missing You, Lost&Co, and Rouwcollectief). The closing event, the Moment of Consolation (i.e., the yearly remembrance moment), was coordinated by VUB’s Marketing and Communication department.

The wide range of activities ensured that the program reflected diverse perspectives and approaches to serious illness, death, and bereavement. By incorporating creative expression, interactive discussions, and activities focused on silent reflection, the festival was designed to resonate with individuals’ varied preferences and coping styles. Moreover, given the university’s highly international population, nearly all activities were organized bilingually (i.e., in Dutch and English).

Data collection

The data collection was focused solely on face-to-face activities, and therefore, webinars were not included in the study. Participant recruitment for interviews was conducted exclusively during the Compassionate Week activities. Attendees were approached immediately after the activity and asked if they had time for a short interview lasting approximately 15–20 min. For those who were willing but unable to participate directly after the activity, arrangements were made for an online interview at a later time.

The study used a semi-structured interview guide, adaptable for the different activities (see Supplemental File 2). Following a brief introduction to the study, interviews started with the question “What motivated you to take part in this activity?” Participants were then asked about their experience with the activity, with subsequent questions aimed at encouraging reflection on the aspects they found most meaningful. Four student researchers (F.L., R.M., A.S., L.F.) from Adult Educational Sciences, assisted the lead researcher (H.B.) in conducting the interviews. All interviews were audio-recorded and transcribed verbatim.

Data analysis

Reflexive thematic analysis was used to analyze and report themes informed by the inductive approach of Braun and Clarke.²⁷ Each interview transcript was carefully reviewed, involving identifying patterns and themes within the data. To ensure rigor, the generated themes were discussed with senior researchers (S.D., J.C., F.V.D.). MAXQDA was utilized for coding and data management.²⁸ Participants’ words are quoted in the text to illustrate the themes and subthemes. Each data extract includes a numeric participant code (e.g., P1) along with the name of the activity they participated in (e.g., P1_Poetry Workshop).

In terms of positionality, the lead researcher (H.B.) is a doctoral researcher with a background in educational sciences, experienced in qualitative research, and working at the university under study. She was responsible for both data collection and analysis. It is important to note that she was also involved in organizing the Compassionate Week, together with the Compassionate University core team. The senior researchers and supervisors (S.D., J.C., F.V.D.) are experts in the fields of education, public health and palliative care, and sociology, respectively. Notably, these researchers are also part of the Compassionate University core team. Additionally, bi-monthly debrief sessions took place with three other senior researchers, experts in public health and palliative care, and adult education (K.C., S.V., L.D.). During these meetings, questions were asked about decisions made regarding the data analysis and interpretation of findings, enhancing the study’s credibility.

Ethical considerations

The study received ethics approval from the Ethical Committee for Human Sciences (ECHW) of Vrije Universiteit Brussel (approval number: ECHW_300). All participants were given oral information about the study, informing them that participation was voluntary and that they were guaranteed confidentiality.

Results

In total, 94 interviews were conducted, comprising 36 men and 58 women, with 71 participants being students and 23 being staff members. Of the 94 interviews, 8 interviews were conducted online. The individual interviews with students and staff varied in duration from 6 to 39 min (median = 18). Table 1 provides an overview of the total number of attendees (N) and the number of interviews conducted for each activity, alongside the gender ratio of interviewees and the breakdown of student versus staff participants. More detailed information on individual participant characteristics can be found in Supplemental File 3.

Table 1.

Information about the participants in relation to the different activities.

Activity	Registered participants	Interviewed participants
Activity	N	N	Male	Female	Student	Staff
Poetry Workshop	10	3	1	2	3	/
Compassion@Work	12	7	3	4	/	7
Compassionate Café	21	8	3	5	7	1
Voices of Compassion	36	12	3	9	9	3
Compassionate Cards	56	23	9	14	20	3
Workshop Student Associations	6	4	2	2	4	/
Remembrance Tree	19	15	2	13	14	1
Grief Studio	36	9	4	5	9	/
Compassionate Walk	8	4	1	3	1	3
Moment of Consolation	27	9	8	1	4	5
Total	231	94	36	58	71	23

The findings are presented in two main sections, “Motivations for participation in the Compassionate Week activities” and “Experiences of the Compassionate Week.” Each section comprises three subthemes.

Motivations for participation in the Compassionate Week activities

Three main reasons for participating in one or more activities of the Compassionate Week were constructed from the data: (i) To help with one’s own grief and bereavement, (ii) To support friends or colleagues, and (iii) To learn about death, bereavement, and the support offered by the university.

To help with one’s own grief and bereavement

Several participants expressed their motivation to participate as a means of coming to terms with their own feelings and emotions. One participant shared her intention to find ways to articulate her feelings, especially considering the recent loss of her father: “I lost my father last year, and the title, Voices of Compassion, just spoke to me. I wanted to hear about other people’s experiences and perhaps learn how to put my emotions into words” (P20_Voices of Compassion). Another participant echoed this motivation, also connecting it to a recent loss: “I participated because I recently lost a family member. I felt that this could be a way to manage my feelings” (P21_Voices of Compassion).

In a similar vein, participants attended the activities with the aim of supporting their healing journey. One participant expressed: “I came to find hope in listening to these poems and to heal my inner trauma” (P30_Voices of Compassion). Another participant saw the Compassionate Café as an opportunity to break the silence around his loss, remarking: “There was a part of my life that I didn’t want to talk about it, or maybe I wasn’t able to talk about it. When I heard about the café, I decided to relieve myself from that part” (P16_Compassionate Café). Reflecting on their motivation for attending, a participant shared her reservations before joining Voices of Compassion, however, she decided to attend the event to gauge her emotional resilience:

I thought about it a lot when I got the final invitation last night. I thought it might be scary to hear people talking about their emotions. But after giving it a lot of thought, and asking myself “Could I do this? Be exposed to all that?” I thought yes, I could use it. And then it was a really safe place. It was very, very sad but in a good way. (P22_Voices of Compassion)

To support friends or colleagues

Supporting friends or colleagues was also a reason for participating in the activities. One participant emphasized this motive: “I’m here mainly because I wanted to support my friend. The topic is also interesting. But mainly I’m here for her” (P12_Compassionate Café). Similarly, another participant joined the yearly remembrance moment (i.e., the Moment of Consolation) to offer solace to colleagues who have experienced loss:

I have several colleagues who have been personally affected by loss in the last 12 months. I think it is important for them that I’m here. This is also why I sometimes go to the funerals of people I hardly knew, as I know that their friends and family will find support and comfort in that. (P88_Moment of Consolation)

Moreover, the announcement of the Compassionate Week sparked conversations within social circles, prompting discussions about who signed up for specific events and encouraging dialogue on the topic. For example, a participant recounted how during a conversation about the Compassionate Week, he found out that a classmate had experienced a similar loss, which influenced his decision to attend the Compassionate Café:

I am here because of a classmate. She said she was coming because she lost her brother in a tragic accident this summer. So, we found out that we share a similar experience, I lost my brother too. And I wanted to support her. But then she cancelled today because she was not feeling well. But I decided to come anyway. (P15_Compassionate Café)

To learn about death and bereavement and find out about university support

Participants were motivated to engage in one of the workshops during the Compassionate Week to learn more about the topic and to explore the types of support offered by the university. For example, one participant said: “Every day, someone faces illness, death, or a difficult situation. So, I wanted to know how we deal with it and what the university offers” (P8_Compassion@Work). Another participant recognized the necessity for additional tools to support his team members facing difficult situations. He stated:

As a manager of 21 people, I frequently encounter situations where one of my team members is facing a challenging situation, not only related to death but also to illness. I felt a strong need to get some extra tips or tools to help me deal with it. It may not be an exact science, but the more information you have about these issues, the better. And I think such activities should be included in some kind of leadership trajectory. (P4_Compassion@Work)

Students participating in the workshop for student associations on grief support expressed similar needs, stating: “I came to receive more information about the support available at university and also how to start conversations with peers about these topics” (P57_Workshop Student Associations). Moreover, some participants found the topic compelling and viewed it as an opportunity for personal reflection and growth. A participant explained her motivation for joining the Compassionate Walk: “I came because I find the theme intriguing, despite not having much personal experience with loss. However, I believe these moments offer valuable opportunities for reflection and learning” (P82_Compassionate Walk).

Experiences of the Compassionate Week

Reflecting with participants on their experiences of the activities in which they participated, three main themes were generated: (i) Creating openness to express and share experiences of loss and bereavement, (ii) Encouraging compassion, and (iii) Raising awareness.

Creating openness to express and share experiences of loss and bereavement

The theme “Creating openness to express and share experiences of loss and bereavement” comprises four subthemes: (i) Giving voice to experiences of loss and bereavement, (ii) Connecting with peers on the topics, (iii) Creative approaches as a means of expressing grief, and (iv) Enhancing participation through a variety of activities.

Giving voice to experiences of loss and bereavement

Participants emphasized the value of activities that offered a platform for individuals to express their experiences of illness, loss, and bereavement. The courage displayed by those who shared their personal stories during events such as Voices of Compassion resonated deeply with participants. One participant remarked:

I was really struck by how open people can be when you give them the chance. It was great to see people share their most intimate thoughts and feelings in a room with people they don’t know, and yet give them the confidence to do so. (P27_Voices of Compassion)

This sentiment was echoed by others who were pleasantly surprised by the enthusiastic participation during the “open mic” part of Voices of Compassion, as one participant said: “I was impressed by how many people were motivated to share their poems. People have a lot to say about the topic. It was also a good opportunity to reflect on my own grief” (P23_Voices of Compassion). The vulnerability exhibited by individuals also left an impression during the Compassionate Café, encouraging others to share their own stories. As a participant shared: “I didn’t expect others to open up so much, nor that I would open up to that extent” (P16_Compassionate Café). Moreover, a participant, who shared a poem during Voices of Compassion, written by her brother who had committed suicide, appreciated the opportunity to share her feelings without feeling obliged to respond to sympathy or inquiries from others. She explained:

I really enjoyed being able to present the poem and give it recognition. At first, it was a bit strange to see other people reading a poem. But when I was standing there myself, it felt so normal. You could just ‘dump’ your trauma without having to face reactions like: 'oh, that’s bad for you' or 'oh, poor thing, I’m sorry for you'. You could simply walk off the stage without having to deal with people who don’t know what to say, and without feeling pressured to address or justify your feelings. (P29_Voices of Compassion)

Connecting with peers on the topics

Creating a safe and supportive environment, where individuals are empowered to voice their experiences of grief and loss, played a pivotal role in helping participants to feel understood and validated in their experiences. Additionally, participants valued the opportunity to connect with peers on these topics. In the poetry workshop, a participant expressed: “I really liked that it was in a group and that you had the chance to talk about it with your peers” (P2_Poetry workshop). Participants also appreciated the opportunity to witness how others navigate similar situations. A participant of the Compassion@Work workshop shared: “It was interesting to hear the stories of the rest of the group and you recognize a lot of what you’ve encountered. It’s nice to see how they dealt with it” (P4_Compassion@Work).

Participants further expressed how hearing others’ stories assisted in understanding their own feelings and forged meaningful connections among attendees. For example, a student remarked: “Their stories helped me, as there were moments when I realized ‘oh that’s actually how I feel’. And that was really healing” (P20_Voices of Compassion). Another participant echoed this sentiment, stating: “It creates a bond with strangers because you can immediately relate to their experiences. Just knowing that there are other people who have gone through similar processes, is somehow comforting.” (P22_Voices of Compassion). Additionally, the conversation cards used in the Compassionate Café were mentioned for fostering positive discussions around these themes and enabling participants to connect with each other on a deeper level. The cards covered questions across three different categories: “Before I Die”; “Compassion and Care”; and “Loss, Grief and Death.” Reflecting on her experience, one participant who came to the Compassionate Café with a group of friends commented:

The game helped us to share these deep things that we didn’t know about each other. We realized that we all have very different experiences of grief and loss. When one of my friends started to cry, I had to restrain myself. But in a good way, the cards made the conversation easier and more open. It was also nice to see that no one tried to hide. (P12_Compassionte Café)

Creative approaches as a means of expressing grief

Incorporating creative outlets such as art and writing proved to be important tools for empowering participants to express their feelings. Reflecting on her experience of the Poetry Workshop, one participant said: “It was nice to discover how you can channel your emotions through writing” (P2_Poetry workshop). Another participant described poems as effective “conversation starters” for broaching discussions on death and loss, stating: “These topics are interesting but are often overlooked or considered taboo. Being creative with serves as a good icebreaker” (P3_Poetry Workshop). Participants also conveyed how these activities helped to give name to the “nameless.” For instance, the Grief Studio provided a platform for drawing and painting around the topics. A student who joined the Grief Studio saw it as an opportunity to honor his grandmother. He shared: “I was thinking about my grandmother and her cooking, and I wanted to honor those moments. We don’t talk about it much at home because it’s still fresh, and it’s painful. Drawing makes it easier” (P79_Grief Studio). Another participant expressed how the creative aspect helped to overcome initial reservations to participate in the Grief Studio:

To be honest, I was not looking forward to this evening. I’ve had a long day, and now I have to talk and think about death, that’s what I thought. But actually it’s kind of fun just to do something creative with it. It makes these issues very approachable. (P76_Grief Studio)

Overall, participants suggested that future events should include more drama, music, film, or other performing arts to balance out the sessions based solely on talking and discussion, and to allow time and space to process difficult emotions.

Enhancing participation through a variety of activities

Participants underscored the value of offering a diverse range of activities so that people can participate at their own level of comfort. Some participants expressed a preference for activities where they do not feel pressured to share personal experiences. For instance, one participant stated: “I find it a bit difficult to participate in activities where I have to expose myself. I find it difficult to talk about these things. So I looked for the activities where I didn’t have to share anything” (P5_Remembrance Tree). Another participant who attended the Compassionate Walk emphasized the importance of having the option not to share personal experiences during the activity. She said:

I liked that there was room to share, but that it was by no means obligatory. The rituals allowed that you could do it in your own bubble, without having to explain it to others. But if you wished to share something, then there was ample space and understanding. I thought that was one of the things that definitely stood out for me. (P85_Compassionate Walk)

Moreover, participants appreciated the “inviting” atmosphere of diverse activities, which lowered the barriers to participation. For instance, P29 stated: “The good thing is that they are ‘hip’ or they are more ‘modern’. No old-fashioned candle lighting, minutes of silence” (P29_Voices of Compassion). Another participant highlighted the “playful” approach of the Compassionate Café:

At first, I was worried: 'Oh no, it’s going to be a tough evening’, but it was handled very lightly, and in a creative way. I found it pleasant. I really thought it was just going to be a discussion like: 'ah, I felt this way, and this was my experience and ah this is my experience'. But it was much more, I don’t want to say more playful, but more light-hearted because there was a balance between music, talking, listening. (P11_Compassionate Café)

Encouraging compassion

The activities also offered a space for introspection, prompting participants to reflect on their strategies for coping with loss. After participating in the Compassionate Walk, a participant realized that her family rarely discusses her grandmother’s death, motivating her to initiate more open conversations about her grandmother with her family. She explained:

My grandmother passed away three years ago, and this month our family gathers for a memorial, but at that moment we don’t talk about mémé. And that is something I’m taking home with me, that we should mention her more often, because while we share positive memories, we don’t really talk about the loss itself or the mourning. (P82_Compassionate Walk)

Moreover, attendees of the Compassionate Café referred to the core value of the event as “pursuing reflection on different perspectives on grief and bereavement and exploring ways to offer support.” A participant said:

It was interesting to see the different perspectives on the topic. I discussed with my friend how your perspective on life and death can influence where you find comfort. For me, my faith offers solace by assuring me that I’ll see the person again when they die. And it’s interesting because someone who doesn’t believe in God might not find comfort in that. We were thinking about how we can offer comfort or how we can be compassionate to different people. Because maybe, it’s not a one-size-fits-all approach. (P14_Compassionate Café)

Other activities, such as the Compassionate Cards, encouraged students and staff to think about who might need support, or who might be going through a difficult time. The activity took place on the main campus, outside the university buildings, allowing passers-by to write a card to someone. The university facilitated the posting of these cards. A participant reflected on this initiative:

It’s really nice because it gives you a moment to think about other people. My grandfather passed away in August. So I’m writing a card to my father because I know he had a really hard time with that. It’s also nice that it is unexpected. (P49_Compassionate Cards)

Another participant explained how the activity provided inspiration to offer support to loved ones, as stated: “It’s cool because things like this don’t happen very often. I wouldn’t immediately do it at home. I saw it as an opportunity to show my support to people who are missing someone” (P45_Compassionate Cards). In a similar way, a participant of the Compassion@Work shared how the workshop enhanced his preparedness to support colleagues faced with loss and improved his ability to be more attentive. He shared:

What do I take with me? I have refined the script that I have as a manager. For example, how can I help arrange bereavement leave, or ask questions like ‘do you want us at the funeral?’. And in my diary, noting when a loved one has died. Even if it’s just that you know when the person will have a difficult time next year, so that you can say 'that's right, that’s the period of the death of that person’s father or mother’. And I also shared this information with my colleagues to say, look, you can do this too. (P5_Compassion@Work)

Raising awareness

Participants emphasized the significance of the Compassionate Week in normalizing and raising awareness of these topics. One participant said: “The week is something you should continue to do every year. It helps to realize that death and grief is something very human” (P86_Moment of Consolation). Moreover, events such as the Remembrance Tree and Compassionate Cards, accessible to all without registration, were particularly highlighted as important in increasing awareness in the wider university community because of their “visibility” across the university campus. As one participant explained: “The fact that you pass by and that you don’t have to go to a specific room, that’s significant. Also, because people who haven’t registered for a specific activity will notice these activities” (P51_Compassionate Cards). This sentiment was shared by another participant who said:

The biggest value of these kinds of events is that they make things visible. The more this would happen, the more we will talk about it. Because it’s not something that’s talked about a lot. It’s still a taboo, a difficult subject. And this creates space to think and talk about it, because when you walk around the campus you see these things happening and it might open up conversations. (P58_Remembrance Tree)

Similarly, the Moment of Consolation (i.e., the yearly remembrance moment) was praised for creating a visible space for vulnerability on the campus. A participant explained: “When everyone stands around the statue, it creates a sense of connection. And the fact that it is outside is a good thing. It makes it a visible spot for vulnerability” (P91_Moment of Consolation). By increasing visibility, the Compassionate Week also helped combat feelings of loneliness and isolation. As one student said: “These initiatives make me feel seen and not alone in my grief. And that is very important when you are grieving” (P40_Compassionate Cards).

Discussion

Summary

This study sought to explore students’ and staff’s motivations for attending one or more activities of the Compassionate Week, a death and grief festival organized as a part of the Compassionate University program, and to understand their experiences of the activities they attended. Participants engaged in the various activities for three main reasons: (i) to help with one’s own grief and bereavement; (ii) to support friends or colleagues; and (iii) to learn about death, bereavement, and the support offered by the university. Three main types of experience were constructed from students’ and staff members’ reflections on the activities. The activities (i) created openness to express and share experiences of loss and bereavement, (ii) encouraged compassion (i.e., reflecting on and acting upon the suffering of others), and (iii) raised awareness of serious illness, death, and bereavement as everyday experiences in school and work life.

Interpretation of main results

The Compassionate Week used several strategies to engage community members: (i) providing educational workshops, (ii) raising community awareness, (iii) supporting exchange of experiences, and (iv) inspiring creative expressions of grief. In this way, the festival offered an opportunity for community members to engage in discourse at their own comfort level. Several participants cited this as one of the strengths of the Compassionate Week, as for some the possibility of expressing and sharing personal stories was important, while in contrast, others found this idea uncomfortable and focused on events of silent reflection. Sellen et al.¹⁴ underscored the importance of utilizing a range of resources – including workshops, open discussions, exhibitions, theatre, and film – to accommodate different types of interaction with the topic and to enable individuals to participate in line with their individual coping styles. Our findings specifically highlighted the potential of creative outlets to overcome hesitancy and encourage engagement in discussions surrounding death and loss. These findings are consistent with previous studies suggesting that incorporating creative modalities in grief support interventions can enhance accessibility by providing a means to process challenging emotions in a less threatening manner.^29,30

Participants’ motivations for attending the different activities of the Compassionate Week partially match findings from Selman et al.’s¹¹ evaluation of the Good Grief Festival. Their research showed that the most common reasons for attending the festival were to learn about grief and bereavement, to be inspired, and to feel part of a like-minded community. In our study, one of the most frequently cited reasons was to learn about the topics and the support offered by the university. Similarly, the 2018 evaluation report of the To Absent Friends Festival found that participants were primarily driven by the desire to cope with their grief, to honor their loved ones, and to be part of a community.³¹ The “desire to cope with their grief” is consistent with our finding that students and staff participated in the activities “to help with their own grief.” While the desire “to be part of a community” was not explicitly mentioned as a reason for participating in the Compassionate Week, participants noted that taking part in the Compassionate Week activities gave them a sense of “belonging.” We also found that students and staff engaged in Compassionate Week activities to support their peers and colleagues, a motivation not observed in previous studies.^11,31 This motivation could be an important addition to survey response options and should be given more attention in broader evaluations.

Our study makes an important contribution to the published research on grief and death festivals by identifying several key mechanisms of action of such events. The first mechanism relates to how the various activities of the Compassionate Week provided a platform for openly sharing experiences of loss and bereavement. When reflecting with participants on the most significant aspects of the festival, a recurring theme stood out: the power of personal narratives. The enthusiastic participation observed during the “open mic” part of Voices of Compassion demonstrated that people are not only willing but eager to talk about death-related subjects when given the opportunity. This echoes the findings of Islam et al.³² who found that people are ready to talk about death and dying, but communication is often hindered by the societal taboo around death conversations, the lack of opportunities, and a personal fear for potentially discomforting others. Compassionate Week activities, such as Voices of Compassion and the Compassionate Café, illuminate the transformative potential of witnessing others’ stories, prompting individuals to introspectively explore and better comprehend their own experiences and emotions. While our study did not specifically assess the impact of participating in these activities on social connection, interview data indicated a potential development of feelings of “relatedness” among attendees through hearing others’ narratives. This observation aligns with Schenker et al.’s³³ conceptual model, which shows the mental health benefits of storytelling for bereaved family members, aiding in emotion disclosure, thought processing, and social bonding.

The Compassionate Café was inspired by the ethos of “Death Cafés,” which are locally organized public events that support discussion on all aspects of death, dying, and mortality.³⁴ It is important to note that Death Cafés, as outlined on their website, are not bereavement counseling or grief support groups, nor should they serve as forums for disseminating information about death and dying.³⁵ Similarly, the Compassionate Café served as a gathering where people could talk about whatever is on their minds related to death, dying, and bereavement, but no professional counselors were involved. Abel et al.³⁶ label such initiatives as “network” approaches focused on behavior change, as opposed to “educational” approaches focused on attitudinal change. Furthermore, the Compassionate Café was also lauded for fostering a “pleasant” or “light-hearted” atmosphere, shifting the perceptions away from “the belief that talking about death is too morbid.” In creating these more lightweight interactions, we may have attracted interest from different groups seeking to explore themes of death and dying in a safe and accessible manner. These kinds of initiatives fit within the so-called death-positive movement that aims to reduce the stigma behind death, enhance social support for those experiencing death and loss, and promote dialogue and acceptance of death and grief.¹⁰

A second mechanism of action of the activities within a grief and death festival such as the Compassionate Week is their ability to prompt participants to reflect on their approaches to supporting others. For instance, participants of the Compassionate Café shared how they gained insights into diverse viewpoints on death, which encouraged them to reflect on how sources of solace can vary depending on one’s beliefs. In this sense, it is interesting to further explore the interplay between religion, cultural diversity, coping strategies, and rituals.³⁷ Moreover, activities such as the Compassionate Cards played a pivotal role in encouraging immediate action to support individuals who are going through a difficult time. These cards allowed individuals to write a message of support, fostering a tangible way to express empathy and solidarity.

A third mechanism of action of the Compassionate Week is to raise awareness of topics such as serious illness, death, and bereavement across the university campus. Participants praised the accessibility and visibility of events like the Remembrance Tree and Compassionate Cards, highlighting their capacity to capture the attention of passers-by and potentially spark conversations within social circles. Similarly, the Moment of Consolation (i.e., the yearly remembrance moment) was commended for creating a visible space for vulnerability on campus. This visibility not only acknowledges but also validates the experiences of those dealing with loss. Furthermore, there is potential for broader community impacts, as research suggests that visible reminders of solidarity can act as a catalyst for mitigating feelings of loneliness and isolation.³⁸

Strengths and limitations

The findings of our research should be interpreted within the context of its limitations. Interviews were only conducted with individuals who were approached by one of the researchers immediately following one of the activities. This immediacy was crucial for obtaining authentic and spontaneous responses, which may have been diluted or altered if collected at a later time. While previous studies of death and grief festivals^11,13 have utilized quantitative methods, which offered a broader reach, our decision to employ qualitative semi-structured interviews allowed us to uncover nuances and subtleties of participant’s lived experiences that would be missed in a purely quantitative design. Participants mentioned that the creation of openness to express experiences, the encouragement of compassion, and the increased awareness of loss and bereavement as part of school and work life were key mechanisms of action of the Compassionate Week. However, the longer-term impacts of these activities, such as behavior and attitudinal changes, remain hypothetical. Further follow-up to explore these distal impacts is an important area for future research. Given that one of the main motivations for participation identified in our study was “to help with one’s own grief and bereavement,” future evaluations of death and grief festivals would benefit from specifically focusing on these attendees to better understand how participation in particular activities may support their grief experience.

Another limitation is the lack of demographic data collected on Compassionate Week attendees, particularly regarding gender, ethnicity, and religious background. As a result, we cannot assess whether the festival reached different segments of the university community. However, observations suggest a diverse audience. For instance, during Voices of Compassion, participants presented texts in multiple languages, reflecting a variety of cultural backgrounds. For future research, it would be valuable to explore who the festival reaches – and who it does not – to better understand its inclusivity and impact.

We also acknowledge that participants may have given more socially desirable responses, assuming that the data collectors were part of the Compassionate Week organizing team. However, in the introduction of the study, the student researchers who assisted with conducting the interviews explained that they were not involved in the organization of the Compassionate Week. Furthermore, it is conceivable that these initiatives primarily engaged people who are already prepared to talk about the end-of-life topics, potentially overlooking those who may be less inclined to engage in conversations about serious illness, death, and grief. Although we also focused on activities for which participants did not have to sign up, such as the Compassionate Cards, further research is warranted to explore the perspectives and experiences of people who could not or would not participate in these kinds of events.³⁹ Follow-up research could also explore the underlying dynamics contributing to staff and students’ preferences, as well as the factors influencing their levels of engagement.

Conclusion

There is a growing recognition of the importance of reclaiming serious illness, death, and bereavement as social concerns and everyday experiences, emphasizing the need to normalize discussions around these topics and strengthen networks of support. Our study suggests that death and grief festivals offer a promising way of contributing to this goal. The Compassionate Week, part of the VUB University program to become a Compassionate University, featured a diverse range of activities that reached an audience who were diverse in their experiences, the types of activities they felt comfortable enough to participate in, and their motivations for participation. Our findings suggest three important mechanisms of action of death and grief festivals such as the Compassionate Week: (i) creating openness to express and share experiences of grief and bereavement, (ii) encouraging compassion (i.e., reflection and immediate action), and (iii) raising awareness of serious illness and loss as everyday experiences in work and school life. These mechanisms can ultimately contribute to greater emotional and practical support for students and staff confronted with the experiences of serious illness, death, or bereavement.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524251336766 – Supplemental material for The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities

Supplemental material, sj-docx-1-pcr-10.1177_26323524251336766 for The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities by Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Luc Deliens, Steven Vanderstichelen, Filip Van Droogenbroeck and Joachim Cohen in Palliative Care and Social Practice

Supplemental Material

sj-docx-2-pcr-10.1177_26323524251336766 – Supplemental material for The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities

Supplemental material, sj-docx-2-pcr-10.1177_26323524251336766 for The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities by Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Luc Deliens, Steven Vanderstichelen, Filip Van Droogenbroeck and Joachim Cohen in Palliative Care and Social Practice

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Supplemental material, sj-docx-3-pcr-10.1177_26323524251336766 for The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities by Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Luc Deliens, Steven Vanderstichelen, Filip Van Droogenbroeck and Joachim Cohen in Palliative Care and Social Practice

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Supplemental material, sj-docx-4-pcr-10.1177_26323524251336766 for The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students’ and staff’s motivations and experiences with Compassionate Week activities by Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Luc Deliens, Steven Vanderstichelen, Filip Van Droogenbroeck and Joachim Cohen in Palliative Care and Social Practice

Footnotes

Acknowledgements

We would like to thank the master’s students Rico Adhem N Meti (R.M.), Fien Leempoels (F.L.), Aurélie Stijn C d’Irumberry de Salaberry (A.S.), and Laura Frans (L.F.) for their assistance with the data collection and transcribing the interviews. Additionally, we would like to thank everyone involved in the organization of the Compassionate Week activities, including the volunteers of Missing You, Rouwcollectief, and Lost&Co, as well as the group from the Languages and Linguistics Department of VUB who successfully organized the literature night – Voices of Compassion.

ORCID iDs

Hanne Bakelants

Sarah Dury

Kenneth Chambaere

Luc Deliens

Steven Vanderstichelen

Filip Van Droogenbroeck

Joachim Cohen

Ethical considerations

The study received ethics approval from the Ethical Committee for Human Sciences (ECHW) of Vrije Universiteit Brussel (approval number: ECHW_300).

Consent to participate

All participants were given oral information about the study, informing them that participation was voluntary, that they had the right to withdraw, and that they were guaranteed confidentiality.

Author contributions

Hanne Bakelants: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Writing – original draft; Writing – review & editing.

Sarah Dury: Supervision; Writing – review & editing.

Kenneth Chambaere: Writing – review & editing.

Luc Deliens: Writing – review & editing.

Steven Vanderstichelen: Writing – review & editing.

Filip Van Droogenbroeck: Supervision; Writing – review & editing.

Joachim Cohen: Supervision; Writing – review & editing.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: H.B. is funded by Compassionate Communities Center of Expertise (COCO) of Vrije Universiteit Brussel (VUB), Pleinlaan 2, 1050 Brussels, Belgium (Grant number IRP16).

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

The dataset used and analyzed in the current study is available from the corresponding author on request. After publication, the data will be archived in a data repository.

Supplemental material

Supplemental material for this article is available online.

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