UC-led team creates tool to improve support during mourning

A research team led by the University of Coimbra (UC) developed and tested a survey in Portugal to assess the quality of support provided by health services during bereavement. Given the positive results of this pilot study, the researchers believe this instrument can contribute to improving the provision of this support and, thus, help people cope with loss.

The UC team conducted this research with the central objective of "understanding the experiences of the family members of those who have died in relation to the support provided, including difficulties they may have had in accessing and receiving support, both from the health service itself and from other resources available in the community," reveals Maja de Brito, a researcher at the UC Faculty of Medicine (FMUC).

Typically, "surveys commonly used in health services focus on assessing satisfaction with the service, but this survey we developed proposes a different approach, focusing on multiple dimensions of the quality of bereavement support," explains the clinical psychologist.

In this context, the developed instrument "covers all levels of support, from specialized care to informal support, offering a complete picture of the grief support ecosystem that bereaved people turn to," explains the University of Coimbra researcher. "This mapping helps identify who the support agents are in a given community and, therefore, fosters the creation of more effective collaborative networks between hospitals, primary care, specialized services, and the community. In this way, the survey contributes to improving continuity of care, one of the main weaknesses identified in grief support globally," she adds.

Specifically, as Maja de Brito reveals, “the usefulness of the support received (i.e., to what extent the person felt that the support helped or changed something for the better), support preferences (the types of support that the person would have liked to have received, but which were not available, either for practical/logistical reasons or because they do not currently exist), access to support (how it was sought, how it was accessed, and if there were obstacles), and barriers to support (why, even when there is a need and desire to receive support, some people are unable to obtain it)” are some of the key points of this survey that was created and tested by the team led by UC.

The survey was conducted among family members of people diagnosed with cancer who received care at the Palliative Medicine Service of the Santa Maria Local Health Unit. Twenty people participated, all of whom had lost a parent, child, partner, or sibling more than a year earlier .

The research team reveals that, for family members, "responding to the survey was experienced as a valuable opportunity to: 1) contribute to the production of new knowledge and, thus, help other people; 2) have their experiences heard and recognized, with the aim of improving support services in the future; 3) help break a social taboo, the difficulty in speaking openly about death and grief; 4) pay tribute to the deceased family member."

Maja de Brito emphasizes the role of health services in supporting people during the grieving process: “these services must, at the very least, carry out an initial assessment of the needs for support in grieving and provide basic information about grieving and the available resources.”

Regarding the benefits of this survey for support services, the scientist explains that "when used systematically, it can help services listen to and learn from the testimony of bereaved people, improving their responsiveness. At the same time, when people feel that their pain is recognized and their experiences are taken seriously, this can represent an essential step in their process of integrating their loss."

Regarding improvements that can be brought about by listening to family members, the researcher adds that "by better understanding each person's needs and preferences, we can move toward a support model that isn't limited to loss management, but also promotes meaning-making, resilience, and human connection so that no one has to suffer in silence." For example, improvements can be implemented such as "adapting communication channels to the preferences of the bereaved, so that basic information about grief and existing support can reach everyone; expanding the range of support options—group support, activity-based support (walking, artistic expression, among other activities); and improving the availability of support services (schedules, telephone and video call support, increased resources for psychosocial teams, among others)."

"This study is based on the conviction that grief support is a shared responsibility among professionals, services, communities, and community networks, so that support providers from different sectors can better coordinate their work to support those experiencing loss," emphasizes Maja de Brito.

The survey can be applied in other health services and is available in English in the scientific article Surveying the quality of bereavement support within a service setting: A pilot study using cognitive interviewing with bereaved people , published in the journal Palliative Medicine .

The study also included researchers from King's College London, the University of Bristol, the Faculty of Medicine of the University of Lisbon, and ISPA – University Institute. It was funded by the Foundation for Science and Technology and the Calouste Gulbenkian Foundation through the DINAMO project – Dynamizing advanced training and research to optimize home palliative care in Portugal , led by FMUC coordinating researcher Bárbara Gomes.