UC researchers develop tool to improve quality of bereavement support

A research team led by the University of Coimbra (UC) has developed and tested a survey tool in Portugal designed to assess the quality of support provided by healthcare services during bereavement. Encouraged by the positive results of this pilot study, the researchers believe that the tool could improve care for those who are grieving, ultimately supporting people experiencing loss in more effective and meaningful ways.

Maja de Brito, a researcher at the Faculty of Medicine of the University of Coimbra (FMUC), explains that the UC team carried out the study to “understand the experiences of people who lost a loved one, including the challenges they faced in accessing and receiving support, whether from healthcare services or other community-based resources.”

“Most surveys used in healthcare settings tend to focus on general satisfaction levels. However, the survey we've developed takes a different approach, assessing several dimensions of the quality of bereavement support," says the clinical psychologist.

This tool provides a comprehensive overview of the bereavement support ecosystem available to the bereaved, covering all levels of care—from specialised services to informal networks. “Such mapping helps identify key support providers within a community and foster stronger collaborative networks between hospitals, primary care, specialised services and the community. Ultimately, the objective is to improve continuity of care, which remains one of the most significant global challenges in bereavement support," she adds.

According to Maja de Brito, the survey developed by the team lead by the UC focuses on some key aspects such as how useful the support received was (i.e. whether it helped or brought about positive change), what support people would have wanted but couldn’t access (due to practical issues or lack of available options), how support was sought and obtained, and why some people couldn’t get help despite needing or wanting it.

The survey was carried out among family members of cancer patients who had received care from the Palliative Care Service at the Santa Maria Local Health Unit. Twenty participants took part, all of whom had lost a parent, child, partner or sibling over a year ago.

The research team reports that, for these family members, “completing the survey provided a valuable opportunity to: 1) contribute to new knowledge and help others; 2) have their experiences heard and acknowledged to improve future support services; 3) break the social taboo surrounding the open discussion of death and bereavement; and 4) pay tribute to their deceased loved one”.

Maja de Brito highlights the importance of healthcare services in providing bereavement support. “They should at least conduct an initial assessment of support needs and provide basic information about grief and available resources.”

Regarding the survey’s benefits, she explains that “used systematically, it helps services listen to and learn from bereaved people, thereby improving their responsiveness. Feeling acknowledged can also be a crucial step in the healing process.”

As for improvements based on family feedback, she adds: “Understanding individual needs allows us to move beyond loss management towards making sense of things, building resilience and fostering connections, ensuring that no one suffers in silence.” Possible improvements include “tailoring communication to bereaved people's preferences, expanding support options to include group activities and artistic expression, and increasing service availability to include phone and video support, as well as stronger psychosocial teams.”

“This study maintains that bereavement support is a shared responsibility among professionals, services, communities and networks to ensure effective coordination in caring for those experiencing loss.” says Maja de Brito.

The survey can be used in other healthcare settings and is available in English in the article Surveying the quality of bereavement support within a service setting: A pilot study using cognitive interviewing with bereaved people, published in Palliative Medicine: https://doi.org/10.1177/02692163251353012.

The study also included researchers from King’s College London, the University of Bristol, the Faculty of Medicine at the University of Lisbon, and ISPA – Instituto Universitário. Led by FMUC coordinating researcher Bárbara Gomes, it was funded by the Foundation for Science and conducted within the scope of the DINAMO project — Advanced Training and Research to Optimise Home Palliative Care in Portugal.