Mapping the ripple effects of a compassionate university for serious illness,death,and bereavement

Abstract

Background:

Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting.

Objectives:

This paper investigates the activities and outcomes of a compassionate community initiative—the Compassionate University program at the Vrije Universiteit Brussel in Belgium.

Design:

Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program.

Methods:

During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records.

Results:

Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university.

Conclusion:

The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment.

Keywords

compassionate communities Compassionate University public health palliative care Ripple Effects Mapping

Background

There is a growing recognition that serious illness, death, and bereavement need to be reframed as the social experiences they essentially are.¹ This acknowledgement has resulted in the development of social–ecological approaches aimed at addressing the challenges associated with these experiences. Such approaches are, in a large part of the literature, referred to as “compassionate communities,”^2,3 drawing inspiration from the action domains of the WHO Ottawa Charter for health promotion: (a) developing personal skills, (b) creating supportive environments, (c) reorienting health services, (d) strengthening community actions, and (e) building healthy public policy.⁴ In 2005, Kellehear operationalized these health promotion strategies into a “Compassionate City Charter” with concrete action recommendations for schools, workplaces, churches, trade unions, cultural centers, hospices, and care homes, among others.⁵

The literature on compassionate communities underscores the significant and unexplored potential of educational institutions to serve as “compassionate schools” and “compassionate workplaces,” promoting well-being around serious illness, death, and bereavement for both students and staff.^6,7 Higher educational institutions are said to carry a responsibility to lead the way in establishing institutional norms, setting standards, sharing best practices, and promoting the acceptability of these events as both a personal experience and a social issue beyond the university.⁸ Moreover, engaging the university community in dealing better with serious illness, death, and bereavement provides opportunities for individual learning, personal growth, and strengthening community capacity.^9,10 In Belgium, the Vrije Universiteit Brussel (VUB) declared itself (mainland) Europe’s first “Compassionate University,” adapting Kellehear’s Compassionate City Charter to fit the university environment.^7,11

To garner broader support for the development of these initiatives and to drive policy change at an institutional level, it is crucial to illuminate the outcomes of these endeavors. However, despite the proliferation of compassionate community initiatives in diverse contexts, such as schools, workplaces, and neighborhoods, the multifaceted nature of these social change initiatives poses a significant challenge to effectively evaluating their impact.^12,13 D’Eer et al.¹⁴ and Quintiens et al.¹⁵ found in their systematic reviews that only a small minority of compassionate community initiatives underwent a thorough outcome evaluation. Most of the identified studies focus on the evaluation of one particular aspect of the initiative, such as the role in healthcare provision or the voluntary involvement of community members.^16,17 The focus on individual-level evaluation results from the pressure on community-based programs to demonstrate impact on individual health outcomes¹⁰ and reflects the inherent difficulties in operationalizing ecological evaluation models.^18,19 Additionally, classical research approaches aimed at addressing causality questions (i.e., what is the effect of X on Y) are ill-suited for studying compassionate community initiatives, which are highly participatory, complex, adaptive, multi-stakeholder, and dependent on community-specific priorities.^12,20 Several scholars have, therefore, argued that studying these initiatives requires a shift away from more traditional research designs predicated on linearity and predictability.^21,22

In this context, participatory methods prove valuable for incorporating the perspectives of those directly involved in the intervention and evaluating the conceptual outcomes of complex public health interventions.²³ Emerging impact measurement approaches, such as Outcome Mapping,²⁴ the Most Significant Change technique,²⁵ and Ripple Effect Mapping,²⁶ aid in understanding the dynamic nature and impact of interventions within complex adaptive systems.²⁷ Unlike traditional evaluation designs, which primarily focus on attribution and attempt to directly link observed changes to an intervention (e.g., randomized controlled trials), these approaches prioritize understanding contribution. Ripple Effects Mapping (REM), for instance, facilitates the investigation of whether an intervention, project, action, or program has played a role in the observed outcomes and illuminates unanticipated impacts.²⁶ This method has also proved instrumental in illustrating more dynamic impacts, such as organizational mindset shifts or the cultivation of informal networks.²⁸

This paper aims to investigate the activities and outcomes resulting from a compassionate community initiative, the Compassionate University program at the VUB in Belgium, using REM as a participatory evaluation tool.

Methods

Study design

We used REM to systematically capture and document the wider effects of the Compassionate University program. REM facilitates the examination of contribution-oriented questions by employing a participatory impact evaluation approach, engaging stakeholders in visually mapping the intended and unintended effects resulting from the program.²⁹ Additionally, a review of project records was carried out to complement the data collected during the REM focus group and individual interviews. The reporting of this study conforms to the Standards for Reporting Qualitative Research (SRQR; Supplemental File 1).³⁰

Context and participants

In November 2019, VUB, located in Brussels, Belgium, declared itself Europe’s first “Compassionate University,” emphasizing the importance of support and compassion during times of serious illness, death, and bereavement. The university has an enrollment of approximately 22,000 students and employs about 4000 staff. The End-of-Life Care Research Group, in collaboration with the Rectorate (i.e., chancellor’s office), took the initiative to translate the Compassionate City Charter to the Brussels university context. The Compassionate University charter is built around five action points: (1) developing clear and transparent compassionate policies and procedures; (2) reorienting support services to address experiences of serious illness, death, and bereavement; (3) normalizing these topics through awareness-raising and community action; (4) enhancing community cultural literacy concerning these topics; and (5) establishing strategic partnerships. 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), voluntarily works on translating the charter’s action points into tangible practices. The study participants included the seven members of the Compassionate University core team (see Table 1).

Table 1.

Participants characteristics — Compassionate University core team members.

Participant	Function and department	Gender	Years of employment at VUB
1	Office Manager (the Rectorate)	Male	21–25 years
2	Professor (Faculty Psychology and Educational Sciences; COCO)	Female	11–15 years
3	Professor (Faculty Family Medicine and Chronic Care; COCO)	Male	21–25 years
4	Professor (Faculty of Social Sciences and Solvay; COCO)	Male	11–15 years
5	Development Manager (Human Resources Department)	Male	11–15 years
6	Project Manager (Marketing and Communication Department)	Male	11–15 years
7	Psychologist for Students (Student Counseling Center)	Female	11–15 years

Data collection

In May 2023, a focus group was conducted on the university campus in Brussels. Facilitated by the lead researcher (HB), the focus group involved the participation of four core team members. The three core team members who were unable to attend the focus group later participated in an online individual interview.

The “in-depth” rippling approach was used to design the focus group session, which encompasses three stages: (1) partner interviews, (2) group discussion and mapping, and (3) reflection.^26,29 After the facilitator introduced the format for the focus group, participants were asked to pair up and interview their partner. A set of guiding questions was provided to the participants, derived from prior REM inquiries by Sero et al.³¹ These questions included: What is a highlight or achievement of Compassionate University? What new or deepened connections with others have emerged as part of the program? What unexpected things (positive or negative) have happened as a result of the program? How have initiatives affected the wider community? Participants were provided with post-it notes to capture their thoughts during the partner interviews. After the partner interviews, the group engaged in a facilitated group discussion, sharing insights gathered from the partner interviews, and inviting all participants to provide further detail regarding their narratives. Details of the stories were collected on a whiteboard, and further questions from the focus group facilitator encouraged participants to reflect on their experiences. Once the post-it notes had been documented on the whiteboard, participants connected the post-it notes and brainstormed about possible themes, creating a mind map that captured the main actions and outcomes of the Compassionate University program (Figure 1). The final stage involved reflecting on any “missing” effects or actions that were initially planned but not achieved. This mirrors Chazdon’s³² approach of augmenting the ripple map to encompass the challenges encountered in moving forward.

Figure 1.

Original mind map drawn during Ripple Effects Mapping focus group (in Dutch).

In the individual interviews with core team members who were unable to attend the REM focus group, the same set of interview questions as those employed during the REM focus group was used. At the end of the individual interviews, participants were provided with the REM focus group session’s mind map, enabling them to contribute any overlooked information and share reflections. The REM focus group lasted 90 min, while the online individual interviews had durations of 43, 48, and 56 min. The REM focus group (exclusive the partner interviews) and individual interviews were recorded and transcribed for analysis.

To deepen our understanding of the changes resulting from Compassionate University, administrative project records were reviewed, including meeting minutes of the monthly core team meetings, policy documents, and the lead researcher’s (HB) logbook with field notes collected throughout the study period (September 2021–January 2024); for more details, see Bakelants et al.³³ These sources facilitated the identification of “ripples” that were not explicitly discussed in the REM focus group or individual interviews or occurred after the REM data collection.

Data analysis

Following the completion of the REM focus group, the qualitative data from the hand-drawn mind map (Figure 1) were entered into the recommended mapping software XMIND.²⁶ This facilitated the conversion of the data into a spreadsheet format, compatible with MAXQDA for subsequent coding and analysis. MAXQDA is a software used for qualitative and mixed methods data analysis, developed by VERBI Software³⁴ In addition, both the focus group and individual interview transcripts were imported into MAXQDA. The data (i.e., the mind map and the transcripts from both the focus group and individual interviews) underwent inductive analysis, following the three steps of practical thematic analysis outlined by Saunders et al.³⁵ Initially, the lead researcher (HB) familiarized herself with the dataset by thoroughly reviewing the transcripts. Subsequently, open coding was conducted, followed by multiple reviews to merge similar codes. Following this, the codes were organized into themes or “outcome areas,” supported by the original hand-drawn mind map created during the REM focus group session (Figure 1). These outcome areas (i.e., themes) were discussed with the research team (SD, JC, FVD) until consensus was reached. Using XMIND, a new mind map was generated to visually represent the agreed-upon outcome areas. Each outcome area included mind map nodes from the original hand-drawn mind map, along with insights derived from the transcripts of the focus group and individual interviews. As a final step, the administrative project records (e.g., minutes, logbook) were reviewed to identify any outcomes not yet documented in the mind map. These additional outcomes, enclosed in green circles in the mind map (e.g., the Compassionate Week), were incorporated into the mind map to create a coherent digitalized mind map encapsulating the main activities and outcomes of the Compassionate University program (Figure 2).

Figure 2.

Ripple Effects Mind Map using XMIND software.

In terms of positionality, the lead researcher (HB) is a doctoral researcher with a background in educational sciences and experience in qualitative research. She was responsible for both data collection and analysis. As a staff member of the university community under study, her insider position proved beneficial for guiding the focus group sessions and individual interviews, as her familiarity with the university context allowed for the immediate contextualization of participants’ reflections. To ensure reflexivity and maintain rigor in our methodology, the lead researcher engaged in reflexive journaling throughout the research process.³⁶ By documenting personal reflections, she aimed to enhance the transparency and credibility of the study, acknowledging both the benefits and challenges posed by her dual role as a community member and investigator. The lead researcher met monthly with senior researchers (SD, JC, and FVD) who are experts in the fields of adult education, public health and palliative care, and sociology, respectively, to discuss the codes and interpret the findings. Notably, these researchers had a dual role, being members of the Compassionate University core team, and thus also participants of the study. This dual role could lead to potential biases, as SD, JC, and FVD may have a personal stake in the program’s success, which could influence their interpretation of the data. To mitigate this potential bias, we cross-checked the data by reviewing project records and the lead researcher’s field notes. To further enhance the study’s credibility, bi-monthly debrief sessions took place with four other senior researchers (LDD, LD, KC, and SV) who are experts in public health and palliative care, and adult education. These senior researchers were not part of the Compassionate University core team. During the debrief sessions, questions were asked about decisions made regarding the data analysis and interpretation of findings. Further reflections on the participatory process and different roles can be found in Supplemental File 2.

Ethical considerations

It is important to note that the REM focus group session and individual interviews were part of a larger study led by the lead researcher (HB), evaluating the development and implementation of the Compassionate University program.³³ Data collection for this research project spanned from September 2021 to January 2024. In September 2021, before the start of the study, participants received written and verbal information about the different parts of the study, including REM data collection. They were informed that participation was voluntary, that they had the right to withdraw from the study, and that they were guaranteed confidentiality. The consent form also sought permission for the utilization of project data, such as meeting minutes. All participants provided written consent for partaking in the study and the use of project data for research purposes.

Results

We identified four outcome areas that capture the key contributions of the Compassionate University program: (1) Increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (2) Broader support for and formalization of “compassionate” procedures and policies; (3) Emergence of informal networks and internal collaboration on the topics; and (4) Diffusion of “compassionate” ideas beyond the university. Quotes illustrating the themes are included in the text, with identifiers (e.g., P1) to distinguish between participants.

Increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices

During the focus group session, participants described how small-scale initiatives contributed to heightened visibility surrounding themes such as serious illness, death, and bereavement across the university community. A participant stated:

We are becoming more visible, and we have small accomplishments that lead to more attention for the theme, such as the empty chair or the infographics with tips on how to deal with grief and loss. They may not have an immediate impact, but they contribute to a cultural shift that encourages gradual change. (P3)

Other initiatives, such as the incorporation of a discussion table on grief into the “well-being tables” of the “WeKonekt Well-being Week,” an event that includes various discussion tables on topics such as therapy, sleep, and psychosocial health, have also helped to raise awareness of these issues. However, participants explained that the structural integration of these topics into existing practices was not achieved without its challenges. They elaborated on how university services, such as Marketing and Communication, displayed hesitancy when it came to incorporating these topics into university events. Consequently, a significant amount of time was dedicated to persuading stakeholders of the importance of explicitly mentioning and acknowledging these themes. For example, during the university’s annual academic opening, which welcomes all staff and students to celebrate the start of the new academic year, a symbolic “empty chair” was set up on the stage, serving as an initiative to remember those who were missing. A solemn moment followed as everyone stood up while the names of the absent were displayed on a large screen. A participant reflected on the process of achieving this initiative:

I remember we wanted to include the “empty chair” in the academic opening. It took a long time to get it accepted. People who were responsible for organizing the event were really scared that such an “unconventional” act might overshadow the festive nature of the moment. There was a long debate about whether such an initiative would not be too risky. They were afraid that it would bring too much “darkness” and that we would scare people. (P5)

Another participant responded and explained how the persistent efforts of the core team and their courage to advocate for initiatives such as the empty chair gradually led to their acceptance. As she articulated: “Afterwards, everyone I spoke to said it was a deeply moving moment. And now, a year later, it’s something normal, and nobody questions it anymore. That’s our achievement” (P2). The same evolution is evident in the context of graduation ceremonies, wherein a new tradition has taken root. Each year, the rector devotes a moment to remembering those who cannot be present. A participant elaborated on this:

Now, in memory of our fellow students who are no longer with us, the rector says a few words. This wasn’t easily attained, we had to fight for it. But now it’s an integral part of the graduation ceremony script. It’s formalized. It’s something that will happen every year, whether we are here or not. And these things will probably be passed on from one rector to another. (P4)

Participants echoed similar reflections regarding the remembrance moment in November, which has become a recurring event incorporated into the academic calendar. The remembrance moment is open to everyone in the university community, with a special invitation extended to family members of deceased students or staff. The commemoration takes place outside at the Monument of Consolation, a statue unveiled at the start of Compassionate University, with live music, space for personal testimonies, and a speech by the Rector. One participant reflected on organizing this moment: “It was also strange to do it in the beginning. But we see more and more people taking part every year, and it is really embedded because it is now part of the academic calendar” (P4). Additionally, a university department organized a remembrance moment for a deceased staff member at the Monument of Consolation without the core team’s initiation. This demonstrates how the Monument has become a space for both the annual remembrance moment and other commemorative events which are driven by community members themselves. Moreover, during the Compassionate Week in November 2023, a variety of events were held on the university campus, including a death café, workshops, and a literature night, to promote openness around serious illness, death, and bereavement. The culmination of the week was marked by the unveiling of a permanent Before I Die Wall on campus. However, the establishment of the Before I Die Wall initially faced resistance due to concerns about potential inappropriate messages students might write on it. Through the persistence of core team members, the wall was realized.

The instances described above reflect a shift in the organizational culture, where previous initiatives focusing on serious illness, death, or bereavement were considered inconvenient within the university setting, but now, these subjects have become “semi-normalized.” Another example of this cultural shift was the presentation of a video message about Compassionate University during the university’s New Year’s reception, as well as the scheduling of the yearly remembrance moment before the university staff party. A participant summarized:

Just the fact that these things are happening in an atmosphere of semi-normality. That’s a sign that we’re making progress. It’s becoming part of the university’s identity. Last year the university’s staff party was scheduled for the same day as the yearly remembrance moment. And I’m sure a few years ago that wouldn’t have been possible, we couldn’t have done that. But now we agreed that it’s okay to combine them, that we can have time for grief, and subsequently, have a party. (P2)

Furthermore, participants noticed an increase in communication about deaths through university newsletters and the online student and staff portals, as well as an improvement in the dissemination of information about events such as the yearly remembrance moment. Moreover, a core team member referenced the distribution of “infographics” by some faculties, which provide guidance to both students and staff on coping with grief and offer strategies for supporting others. He said:

It’s encouraging to see that even deans are actively disseminating information about the yearly remembrance moment and the infographics we’ve created with tips for students and staff. It’s reached a point where people acknowledge that it’s acceptable to organize these initiatives within a university context. In the past, if you had asked them to share this information, some might have raised an eyebrow. (P1)

Broader support for and formalization of “compassionate” procedures and policies

Participants also noted that certain practices and procedures were formalized and gained broader university support through the efforts of the Compassionate University core team. One such example is the script used when a staff member returns to work after an extended period of illness. As one participant elaborated: “The impact of this group? The script had already been there for 15 years, but thanks to this group, it has been formalized and widely disseminated” (P5). Another participant who works for the student guidance center echoed this sentiment:

When I was confronted with the first death of a student in 2012, there was nothing, no guidelines. So, I started formulating a procedure and sat down with other services. It was in 2013 that a document was worked out. And then in 2019, they started with Compassionate University. The core team made sure that the script was presented to all boards and finally approved. The procedure became something official because of Compassionate University. I could never have done that alone. Compassionate university was important to embed it in the larger structure of the university. (P7)

In addition to the formalization of documents, the university’s declaration of intent to become a “Compassionate University” offers support and legitimacy, allowing core team members to leverage ideas and documents under the banner of “We are a Compassionate University.” A participant, working for the Human Resources department remarked:

Compassionate University gives me a sense of grounding and support. For example, a manager may not possess the necessary skills, I can now contextualize it within “We are a compassionate university, you need to read the guidelines on return-to-work and educate yourself about the topic.” (P5)

Moreover, Compassionate University, as a project, is included in the Primary Prevention Policy Plan of the Education and Student Affairs Department and the actions of Compassionate University are incorporated into the university’s Global Prevention Plan, leading to increased visibility across services. In addition, the core team undertook the task of revising policies that hindered compassionate behavior. One notable instance involved addressing challenges in reimbursing company expenses for gifts to colleagues facing long-term illness or loss. Recognizing this issue, the core team worked to amend expense regulations to include a budget specifically for small gifts to colleagues facing such circumstances. During the COVID-19 lockdown, the university’s bereavement leave policy was also extended by 1 day. Although core team members acknowledged that this adjustment represented just a fraction of the necessary response, they viewed it as a step toward raising awareness about the widespread experience of loss and the need for policy adjustment. While acknowledging the importance of influencing policies on a broader scale, core team members emphasized the need for quantifiable data to underscore the necessity for such changes. Consequently, efforts were made to incorporate relevant questions into the university’s well-being survey. These questions sought to gauge the experiences of students and staff who had dealt with serious illness or loss in the past year and whether they received support from the university, intending to inform further enhancements in procedures and policies.

Emergence of informal networks and internal collaboration on the topics

Core team members noted that they are becoming increasingly recognized by community members as the driving force behind Compassionate University. Consequently, community members are more inclined to approach them for information or assistance when confronted with serious illness, death, or bereavement. One participant provided an example:

I have noticed that colleagues in my department are reaching out to me more often. For instance, last month a professor approached me about a student who had a death in her family, and he was uncertain about what to do with her assignments, what was possible. And also, colleagues come to me more often when they know that a family member of a colleague or someone close to them passed away. (P3)

This illustrates how core team members evolved into ambassadors within their departments or research groups. Without explicitly taking up this role, colleagues started to perceive them as “experts.” Another participant noted: “People are aware of my involvement in the core team, and that in itself has an impact. People reach the right individuals more quickly through us, resulting in the emergence of a new and visible network” (P4). Moreover, a participant observed an increase in spontaneous reports of deaths to the rectorate. In contrast to the past, when there was often a delay in the rectorate receiving such news, it seems that information is now reaching the relevant individuals more promptly through informal channels. As one participant stated: “We can’t be certain about causation, but the fact that there are more spontaneous reports of deaths. . . People have more of a reflex to come to us and share such news. Perhaps more information about deaths leads to more reports” (P1).

Although inquiries are not always directly addressed to the Compassionate University core team, other services such as Human Resources and Marketing and Communication are becoming more acquainted with Compassionate University and are reaching out for their support. For instance, Marketing and Communication received a query from a research group that had lost a postdoctoral researcher. They sought guidance on organizing a remembrance moment with the department and the family. A representative of Marketing and Communication, who got to know the lead researcher (HB) during the Compassionate Week, reached out to her with this question. Additionally, the psychological center sought the expertise of the Compassionate University core team to conduct a workshop on “compassion in the workplace,” while the university’s well-being coordinator invited them to showcase their work at the university’s Well-being Conference. These instances illustrate a growing recognition of the need for internal collaboration and the importance of integrating these topics into the broader well-being framework.

Diffusion of compassionate ideas beyond the university

Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different organizations seeking insight and guidance on the topic. Participants emphasized the impact they have through their pioneering role. One participant highlighted this by saying:

In Rotterdam they also want to work towards a “Compassionate University College” and VUB is prominently cited as an example, a source of inspiration, even literally in their documents. We see a lot of ripple effects stemming from our role as an ambassador, demonstrating how we inspire other institutions. (P5)

Another participant echoed this sentiment: “One of our achievements is our ambassadorial role. Colleagues come to us for information, like the professor from the Netherlands and the meeting with a university from Canada. They contact us and want to know how we do this” (P2). Core team members expressed a desire to enhance knowledge and share experiences with other institutions regarding compassionate initiatives on a regular basis. This aspiration led to the establishment of the “Learning Network Compassionate Schools” by VUB’s COCO. The collected empirical data and the publications of the research team on Compassionate University granted those in other universities and colleges more legitimacy to present the case to their university’s HR department. Additionally, numerous master’s students in Adult Educational Sciences dedicated their thesis to Compassionate University. Notably, one of them is currently employed at the Center for Student Guidance in Brussels, specializing in psychosocial well-being, and incorporating these themes into comprehensive well-being plans. Participants also shared how they disseminate the insights acquired through Compassionate University to their personal networks. For instance, one core team member explained:

At my daughter’s school, a child had lost a parent. So, I contacted the headteacher about the concept of compassionate schools and sent her information about policies and resources to implement a proactive approach. She later messaged me that it really helped. Just systematically identifying the areas where you can offer some kind of support, that’s important. (P3)

Discussion

This paper aimed to investigate the activities and outcomes resulting from a compassionate community initiative—the Compassionate University program at VUB, using REM as an evaluation tool.²⁶

One of the main contributions of the Compassionate University program has been fostering a cultural shift within the university toward greater acceptance and integration of topics such as serious illness, death, and bereavement into existing events. An illustrative example is the inclusion of a dedicated discussion table on grief in a broader well-being event on the university campus. Other initiatives, such as the empty chair, which gave grief and loss an integral place in the academic opening ceremony, validate the acceptability of these experiences within the university community. In addition, the yearly remembrance moment held on campus supports the act of “continuing bonds” with the deceased.³⁷ Regular opportunities for collective remembrance, as advocated by Kellehear,³⁸ encourage open dialogue among community members. These activities not only normalize the act of remembering meaningful others, but also affirm the importance of communal support in times of grief and loss. Grindrod and Rumbold³⁹ further underscore how such events can challenge social norms and perceptions about offering, accepting, and asking support, prompting to rethink the need for “independence” and fostering greater community capacity to support each other during challenging times.

However, our study also revealed initial resistance from university stakeholders to integrating these topics into existing university practices. This resistance may stem from the perception that students’ and employees’ grief is inappropriate in a context that emphasizes productivity and prestige.^7,40 Our study highlights the need to embrace the discomfort that comes with initiating “compassionate” initiatives that focus on serious illness, death, and bereavement. When educational institutions encourage the concealment of these topics, they contribute to their marginalization in public discourse, which can lead to less social support, mental health problems, and poorer academic achievement.^41,42

Additionally, policies play a crucial role in shaping the culture of communities, as they can either facilitate or constrain compassionate behavior. In our study, the Compassionate University core team took steps to address policy impediments, such as revising expense regulations to include budgets for gifts to colleagues facing illness or loss. The core team also had a significant role in formalizing and disseminating existing documents and protocols for dealing with the death of a student or staff member. Nevertheless, challenges stemming from administrative processes and inconsistencies in policies across faculties, particularly regarding bereavement leave and examination deferrals, coupled with issues relating to inflexible central systems, as identified in a prior study,⁷ have largely remained unaddressed by the Compassionate University core team. It is important for future research to explore strategies to navigate these complexities with empathy whilst upholding “operational efficiency,” as part of the challenge in dealing with bereavement is the “empathy-efficiency paradox”—the perception that organizational goals often conflict with the needs of bereaved individuals.⁴³

Another ripple effect stemming from the Compassionate University program has been the emergence of informal networks, with core team members noting an increased inclination of colleagues to approach them for information or assistance in relation to serious illness, death, or bereavement. Previous research has indeed shown that students and staff often struggle to identify whom to approach with questions related to illness or bereavement, underscoring the need for visible contact points.^44,45 Additionally, our study found that university services such as Human Resources and Marketing and Communication are increasingly seeking core team members’ support and expertise in handling-related matters. This finding aligns with conclusions of Grindrod and Rumbold,³⁹ underscoring the crucial role of visible key stakeholders as bridge builders who initiate discussions on the topic within existing community structures. Moreover, participants in our study observed ripples stemming from their pioneering role, as Compassionate University attracts interest from various educational institutions seeking guidance and inspiration on how to cultivate a more compassionate environment.

Achieving ripples through community action, that is, the process of actively engaging with the community to inspire action,⁴⁶ was an effect that was less pronounced in our study, except for the Compassionate Week organized on the university campus. This is in line with the scoping review on compassionate communities of Dumont et al.¹⁹ that categorized outcomes of compassionate community initiatives according to the five Ottawa Charter action strategies for health promotion and found that the one aspect that received relatively less attention was the strengthening of community actions. Patients, families, and community members were found to be most often engaged as the target audience of compassionate communities’ initiatives, rather than as full partners of community-led programs. This is despite the emphasis on socioecological approaches to community development in the theoretical writings about compassionate communities.^2,3

The findings of our research should be interpreted in the context of its limitations. In the study, we only captured the perspectives of the “implementers” of the Compassionate University program (i.e., the core team members). While REM is typically employed to query community members who are involved in and affected by a particular program or intervention,^47,48 Compassionate University is a prime example of a complex intervention that aims for a systems approach, making it challenging to map its effects through community members’ interviews due to its numerous interacting parts and initiatives (many of which are small and difficult to track) and its aim of targeting different organizational levels. Moreover, ripples such as the “semi-normalization” of initiatives can significantly influence the potential success of later endeavors, underscoring their role within a complex adaptive system and their inseparability from the project itself. Additionally, REM has proven to be a valuable tool in illuminating areas where demonstrating impact proves difficult, or where ripples lead to “dead ends,” making them difficult to track or validate. For example, while the infographics with tips on dealing with grief and loss were developed and distributed by the core team, their eventual use remains unknown. It is also important to note that it may take a long time before a “ripple effect” can be observed or registered, as public health initiatives often require long timeframes to develop, implement, and evaluate.²⁸

Further evaluations are necessary to explore community members’ perspectives regarding the ripples identified by core team members and how they are affected by them. Conducting interviews with stakeholders along the chain could also offer a deeper understanding of the further dissemination of ripples. Moreover, there is a need for more case studies that can act as concrete, context-dependent exemplars to gain insights into how complex public health interventions contribute to a broader systems approach aimed at enhancing the well-being of individuals confronted with experiences of serious illness, death, and bereavement. To understand the contextual factors and underlying processes influencing the development of the Compassionate University program, we also conducted a longitudinal process evaluation to provide insights into how the program evolved over time.³³

Conclusion

The study delved into the activities and outcomes generated by the Compassionate University program at VUB. Four outcome areas were identified: (i) increased acceptance and integration of the topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of “compassionate” ideas beyond the university. Moving forward, continued research will be essential to further examine the impact of compassionate community initiatives in the context of educational institutions and to elucidate how these settings can encourage open dialogue about serious illness, death, and bereavement, build community capacity, and potentially enhance the well-being of students and staff facing these experiences.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524241272110 – Supplemental material for Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement

Supplemental material, sj-docx-1-pcr-10.1177_26323524241272110 for Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement by Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Liesbeth De Donder, Luc Deliens, Steven Vanderstichelen, Silke Marynissen, Joachim Cohen and Filip Van Droogenbroeck in Palliative Care and Social Practice

Supplemental Material

sj-docx-2-pcr-10.1177_26323524241272110 – Supplemental material for Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement

Supplemental material, sj-docx-2-pcr-10.1177_26323524241272110 for Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement by Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Liesbeth De Donder, Luc Deliens, Steven Vanderstichelen, Silke Marynissen, Joachim Cohen and Filip Van Droogenbroeck in Palliative Care and Social Practice

Footnotes

Acknowledgements

None.

Declarations

ORCID iDs

Hanne Bakelants

Sarah Dury

Kenneth Chambaere

Liesbeth De Donder

Luc Deliens

Steven Vanderstichelen

Silke Marynissen

Joachim Cohen

Filip Van Droogenbroeck

Supplemental material

Supplemental material for this article is available online.

References

Abel

Kellehear

. Palliative care reimagined: a needed shift. BMJ Support Palliat Care 2016; 6: 21–26.

Abel

. Compassionate communities and end-of-life care. Clin Med 2018; 18: 6–8.

Kellehear

. Compassionate communities: end-of-life care as everyone’s responsibility. QJM 2013; 106: 1071–1075.

World Health Organization. The Ottawa charter for health promotion, https://www.who.int/teams/health-promotion/enhanced-wellbeing/first-global-conference (1986, accessed 4 January 2024).

Kellehear

. Compassionate cities: public life and end-of-life care. Oxford: Routledge, 2005.

Liew

Servaty-Seib

. College student grief, grief differences, family communication, and family satisfaction. Death Stud 2018; 42: 228–238.

Bakelants

Van Droogenbroeck

Chambaere

, et al. A Compassionate University for serious illness, death, and bereavement: a qualitative study of students’ and staff members’ experiences and support needs. Death Stud 2024; 48: 442–453.

Valentine

Woodthorpe

. Supporting bereaved students at university: Balancing institutional standards and reputation alongside individual compassion and care. Death Stud 2020; 44: 12–24.

Spiccia

Howell

Arnold

, et al. Supporting bereaved students in higher education: student perspectives. Br J Guid Counc 2023; 51: 381–394.

10.

Sallnow

Richardson

Murray

, et al. The impact of a new public health approach to end-of-life care: a systematic review. Palliat Med 2016; 30: 200–211.

11.

Vanderstichelen

Dury

De Gieter

, et al. Researching compassionate communities from an interdisciplinary perspective: the case of the Compassionate Communities Center of Expertise. Gerontologist 2022; 62: 1392–1401.

12.

Bakelants

Vanderstichelen

Chambaere

, et al. Researching compassionate communities: identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. Palliat Med 2023; 37: 291–301.

13.

Librada-Flores

Nabal-Vicuña

Forero-Vega

, et al. Implementation models of compassionate communities and compassionate cities at the end of life: a systematic review. Int J Environ Res Public Health 2020; 17: 6271.

14.

D’Eer

Quintiens

Van den Block

, et al. Civic engagement in serious illness, death, and loss: a systematic mixed-methods review. Palliat Med 2022; 36: 625–651.

15.

Quintiens

D’Eer

Deliens

, et al. Area-based compassionate communities : a systematic integrative review of existing initiatives worldwide. Palliat Med 2022; 36: 422–442.

16.

Vijay

Zaman

Clark

. Translation of a community palliative care intervention: experience from West Bengal, India. Wellcome Open Res 2018; 3: 66.

17.

Stevens

Lancer

Smith

, et al. Engaging communities in evidence-based interventions for dementia caregivers. Fam Community Health 2009; 32: S83–S92.

18.

Pfaff

Krohn

Crawley

, et al. The little things are big: evaluation of a compassionate community approach for promoting the health of vulnerable persons. BMC Public Health 2021; 21: 2253.

19.

Dumont

Marcoux

Warren

, et al. How compassionate communities are implemented and evaluated in practice: a scoping review. BMC Palliat Care 2022; 21: 131.

20.

Roy

Vachon

. Palliative care: changing paradigms to face new challenges. Med Res Arch 2020; 8: 1–11.

21.

Breen

Moullin

. The value of implementation science in bridging the evidence gap in bereavement care. Death Stud 2020; 46: 639–647.

22.

Greenhalgh

Papoutsi

. Studying complexity in health services research: desperately seeking an overdue paradigm shift. BMC Med 2018; 16: 4–9.

23.

McGill

Marks

Vanessa

, et al. Qualitative process evaluation from a complex systems perspective: a systematic review and framework for public health evaluators. PLoS Med 2020; 17: e1003368.

24.

Earl

Carden

Smutylo

. Outcome mapping. Ottawa, Canada: International Development Research Centre, 2001.

25.

Davies

Dart

. The ‘most significant change’(MSC) technique, https://ahi.sub.jp/eng/wp-content/uploads/2022/02/MSCGuide-1.pdf (2005, accessed 3 January 2024).

26.

Chazdon

Emery

Hansen

, et al. A field guide to ripple effects mapping. Minneapolis, USA: University of Minnesota Libraries Publishing, 2017.

27.

Mills

. Community-based participatory research and Public Health Palliative Care. Prog Palliat Care 2022; 30: 67–68.

28.

Nobles

Wheeler

Dunleavy-Harris

, et al. Ripple effects mapping: capturing the wider impacts of systems change efforts in public health. BMC Med Res Methodol 2022; 22: 72.

29.

Emery

Higgins

Chazdon

, et al. Using ripple effect mapping to evaluate program impact: choosing or combining the methods that work best for you. J Ext 2015; 53: 28.

30.

O’Brien

Harris

Beckman

, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med 2014; 89: 1245–1251.

31.

Sero

Hansen

Higgins

. Evaluating your community work with in-depth Ripple Effects Mapping. In: Paper presented at the American Evaluation Association annual conference, Atlanta, GA, USA, 2016.

32.

Chazdon

. Findings from a Ripple Effects Mapping evaluation of the Welcoming Communities Program and B.E. Welcoming, https://conservancy.umn.edu/handle/11299/259230 (2023, accessed 4 January 2024).

33.

Bakelants

Van Droogenbroeck

De Donder

, et al. Uncovering barriers and facilitators in the development of a compassionate university: a process evaluation. Unpublished.

34.

VERBI Software. MAXQDA 2022, maxqda.com (2021, accessed 19 December 2023).

35.

Saunders

Sierpe

Von Plessen

, et al. Practical thematic analysis: a guide for multidisciplinary health services research teams engaging in qualitative analysis. BMJ 2023; 381: e074256.

36.

McGrath

. Journalling and memoing: reflexive qualitative research tools. In: Crossman

Bordia

(eds). Handbook of qualitative research methodologies in workplace contexts. Massachusetts, USA: Edward Elgar Publishing, 2021, pp. 254–262.

37.

McCarthy

Prokhovnik

. Embodied relationality and caring after death. Body Soc 2014; 20: 18–43.

38.

Kellehear

. Commentary: Public health approaches to palliative care—the progress so far. Prog Palliat Care 2016; 24: 36–38.

39.

Grindrod

Rumbold

. Healthy end of life project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia. Ann Palliat Med 2018; 7: 73–83.

40.

Bauer

Murray

. “Leave your emotions at home”: bereavement, organizational space, and professional identity. Women’s Studies in Communication 2018; 41: 60–81.

41.

Plocha

Modrak

Hoopes

, et al. Resilience among bereaved college students: indicators, facilitators, and barriers. Death Stud 2023; 47: 121–129.

42.

Kennedy

Keeffe

Gardner

, et al. Making death, compassion and partnership “part of life” in school communities. Pastor Care Educ 2017; 35: 111–123.

43.

Bergeron

. Time heals all wounds? HRM and bereavement in the workplace. Hum Resour Manag Rev 2023; 33: 100931.

44.

Hay

Howell

Rudaizky

, et al. Experiences and support needs of bereaved students in higher education. OMEGA. Epub ahead of print May 2022. DOI: 10.1177/00302228221096565.

45.

McGuinness

. Grief in the workplace: developing a bereavement policy. Bereave Care 2009; 28: 2–8.

46.

Popay

. Community empowerment and health improvement: the English experience. In: Morgan

Davies

Ziglio

(eds). Health assets in a global context: theory, methods, action. New York, USA: Springer, 2010, pp. 183–195.

47.

Spain

Stewart

Betts

, et al. Wheel of Wellbeing (WoW) health promotion program: Australian participants report on their experiences and impacts. BMC Public Health 2021; 21: 2037.

48.

Washburn

Traywick

Thornton

, et al. Using Ripple Effects Mapping to evaluate a community-based health program: perspectives of program implementers. Health Promot Pract 2020; 21: 601–610.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB