Navigating serious illness, death, and bereavement in higher education: insights from the Compassionate University Programme at the Vrije Universiteit Brussel (VUB)

1. Rationale and research purpose

At different points in our lives, regardless of our age, gender, location, or socioeconomic status, everyone will face experiences of serious illness, death, and bereavement. Yet these experiences too often appear as taboo topics and are almost exclusively embedded in professional healthcare narratives and practices. In response, the Compassionate Community approach has been introduced as a new public health initiative, emphasizing the need to empower communities and build capacity to support each other in times of serious illness, death, and bereavement. There is a compelling argument that higher education institutions are particularly interesting settings for adopting this approach. They can play a crucial role in supporting the well-being of students and staff while establishing best practices for addressing and accommodating these experiences.


In November 2019, the Vrije Universiteit Brussel (VUB) declared itself Europe’s first ‘Compassionate University’. The rectorate signed a declaration of intent with action points aimed at fostering a compassionate environment. These action points include: improving access to professional health services; supporting bottom-up initiatives related to serious illness, death, and bereavement; offering training and coaching on these topics; raising awareness through activities such as exhibitions and debates; and organizing commemorative moments. A core team, comprised of stakeholders from different university departments, including the Rectorate, Student Counseling Center, Human Resources, Marketing and Communications, and the Compassionate Communities Center of Expertise (COCO), is responsible for implementing the action points. The overall aim of this dissertation is to examine the development process of the VUB towards a Compassionate University.

2. Discussion of the main findings

Before studying the development process towards a Compassionate University, it was essential to identify appropriate evaluation approaches. Therefore, I started with examining suitable theoretical frameworks for understanding the complex processes behind Compassionate Community initiatives. As a result, three theoretical frameworks were identified: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). Consequently, two of these frameworks, namely CFIR and (E)NPT, were used to analyze the development process towards a Compassionate University. This analysis revealed that establishing a shared understanding of the goals and scope of the Compassionate University program proved challenging due to different interpretations of the term “compassionate”. The multidisciplinary composition of the core team and the intrinsic motivation of its members were highlighted as assets in moving the program forward. However, several barriers complicated the development process, including a lack of good practice examples, the fragmented university environment, and limited prioritization of the topics within the university.

To guide the development process toward a Compassionate University and ensure alignment with community needs, a qualitative study was conducted on the experiences and support needs of students and staff. This study revealed that the university is often perceived as a demanding environment with little space for serious illness and grief. Students and staff emphasized the importance of developing transparent bereavement policies and procedures. Staff also expressed a need for ‘compassionate leadership training’ to increase organizational knowledge of bereavement leave administration. In addition, it was stressed to be mindful of individual differences in grief experiences, which requires personalized support. Finally, students and staff suggested organizing discussion cafes, support groups and other (artistic) events to promote positive attitudes toward these topics on university campuses. Responding to this, the Compassionate Week, a thematic festival around grief and loss, was organized on the university campus as part of the Compassionate University program. Interviews with participants of the Compassionate Week indicated that the activities created openness to express and share experiences of loss and grief, encouraged compassion (i.e., reflecting on and acting upon the suffering of others), and raised awareness of serious illness, death, and bereavement as integral parts of school and work life.

Finally, the activities and outcomes of the Compassionate University program were evaluated using Ripple Effects Mapping (REM) as a participatory evaluation approach. One of the main outcomes of the Compassionate University program has been fostering a cultural shift within the university towards greater acceptance and integration of issues of serious illness, death, and bereavement into existing practices. Additionally, 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. They also had a significant role in formalizing existing documents and protocols for dealing with the death of a student or staff member. Furthermore, their pioneering efforts have attracted interest from various educational institutions seeking guidance and inspiration on how to cultivate a more compassionate environment.

3. Implications for policy, practice, and further research

Based on the findings of this dissertation, several implications for policy, practice, and future research can be formulated. First, developing a Compassionate Community requires a deep understanding of the current values, beliefs, perspectives, and priorities of community members related to end-of-life issues. Therefore, it is recommended that community members are involved in the priority-setting stages of Compassionate Community development. Additionally, adopting an asset-based community approach is encouraged. This approach focuses on leveraging existing resources and assets rather than starting from scratch, fostering a more sustainable and integrated development process.

Second, it is crucial to develop clear and transparent bereavement leave policies that are flexible in their application. Current bereavement leave policies often do not provide employees with sufficient time to grieve, usually only around three days. Requiring a doctor's proof for additional days unfairly classifies grief as a ‘disease.’ Offering longer periods and allowing flexibility in how and when leave is taken can accommodate the diverse and long-term nature of grief. Further, supervisors may be helped by a bereavement protocol with a set of focal points. Additionally, student bereavement is a pressing concern that is often overlooked in university policy development and practice. Universities need to develop clearer, more inclusive, and easily accessible policies to effectively support grieving students, including long-term support after the death of a loved one.

Third, it is important to create space and recognition for experiences of grief and loss on university campuses. Death and grief festivals, such as the Compassionate Week, can enhance visibility and promote open dialogue about serious illness, death, and bereavement. To optimize the impact of these events, it is essential to offer a variety of activities, from personal storytelling to silent reflection, to accommodate different comfort levels. Furthermore, these events can foster internal collaboration and support the emergence of bottom-up initiatives.

For further research, it is important to focus on the experiences of students and staff who are facing serious illness or who are providing informal care. This group is often overlooked in research, yet a significant proportion of students combine their studies with caregiving responsibilities. Additionally, there is a need to understand the grief experiences and support needs of the culturally diverse and international university population. Further research should also provide insights into the perspectives and experiences of university stakeholders, such as student psychologists and HR personnel, in dealing with these issues since they are often the first point of contact for students and staff facing serious illness or bereavement.