Participants sought for end-of-life research

Volunteers from Cork are being sought for a new project to break the stigma surrounding conversations around peoples’ end-of-life experiences.

The Irish Hospice Foundation (IHF) is to take part in a research project that will examine and communicate their end-of-life experiences through photographs.

Photovoice is a research method combining photography and storytelling with the goal of giving voice more directly to an underrepresented group to influence social change.

The IHF highlighted the importance of ensuring that end-of-life experiences are better and understood in health and social care services, as almost 4,000 people died in Cork last year.

Sara Leitão, Director of Research and Policy at IHF said: “Research that includes the voice of individuals at end of life is rare. That means we are missing the voices, views, and experiences of people who are themselves going through the end-of-life journey.”

The project is looking for participants who are in the last 12-18 months of their lives. Supported by a research team in IHF, people will be asked to take photos of objects, symbols, or scenes that hold meaning for them at the end of their lives.

Each participant will also have the chance to speak to the researcher and explain the meaning behind the pictures they take.

“There are no right or wrongs,” said Leitão. “You can choose whatever you like to take photos of, these might be images of something positive such as a supporting pet, or negative.

“We assume that people don’t want to share their end-of-life experience, but in IHF’s experience, they do,” she said.

Those interested in the project will speak to a member of the team who will talk through what is involved and answer any questions. If they would like to proceed, participants will then meet a team member who will provide all the guidance needed to take part.

IHF has a team of people with a lot of experience in having sensitive conversations about this difficult period of people’s lives and who are trained to guide and work closely with people as they take part in this project.

“Once we receive these photos the team member will meet the participant and discuss these and the meaning they hold,” said Leitão.

“This will bring additional insight on the personal meaning and relevance of these photos to add further to the story they tell about end-of-life experiences.

“By seeing these images, understanding the unique experiences behind them and witnessing the stories they represent, meaningful conversations about life, death, dying and bereavement will be promoted.

“This will be a unique opportunity to normalise discussions on these, often feared or avoided, topics and reduce stigma,” she said.