New Video for Patients and Informal Caregivers: Living With an Incurable Disease

loving family

Subtitle: Interview with Francois Tardif, Executive Director of RQSPAL, and Alexandra Guité-Verret, President of the Student Committee in charge of the creation of the video.

Suzanne LeBlanc (SL) How long has the RQSPAL been in existence?

Francois Tardif (FT): This organization was founded in May 2017 and it was Dr. Pierre Gagnon who was its founder and who is now the Director of RQSPAL. Its creation was possible as a result of financing by the Fonds de recherche du Quebec (FRQS). The mandate of the RQSPAL is to develop research in palliative and end-of-life care in Quebec by ensuring the advancement of knowledge and practices as well as the transfer of knowledge to the general public and communities of practice. Since 2017, the network has grown from 150 members to more than 300 members, including researchers, research students and administrators.

SL: What was the origin of this short video project?

Alexandra Guité-Verret (AGV): The project was born from a discussion between three doctoral and post-doctoral students: Josianne Avoine-Blondin, Martin Roberge and myself. We shared an interest in popularizing science and wanted to create sensitive content based on the experience of incurable disease, which is often difficult to talk about among ourselves and in society in general. It seemed interesting to us to develop a short film to convey scientific information, in other words to combine art and science. Creating a story allowed us to present several perspectives associated with the experience of incurable disease, in the sense that we could cross the trajectory of different characters: Audrey, suffering from an incurable disease, and those who gravitate around her. This means that the story presented in the video opens up to the experiences of young adults, children and seniors, giving us a broader picture of the phenomenon. In developing the content and writing the story, we drew on recent books and scientific papers, and on our own research in the fields of psychology and nursing.

FT: There was a scientific procedure applied to create the content of this video. There was thought and scientific work behind the creation to ensure that it was as relevant as possible for the patients and their loved ones.

SL: How do you perceive the impact of the video on people with incurable disease and caregivers as well as the public in general?

FT: The video was distributed just before Christmas and already we have had 2,500 viewers. We have received only positive comments and reactions from the public as well as community stakeholders. Many found the video very touching. Our newsletter allowed our video to travel. The English and French versions of the video were sent to some twenty or more organizations involved with palliative care including among others, the Canadian Hospice Palliative Care Association (CHPCA).

AGV: We wanted the video to provide a touch of hope. Research shows that patients and their loved ones suffer on many levels when a terminal illness comes into their lives, but that it is also possible to find meaning in the process. We wanted to send the message that there is an opportunity to have a dialogue around this ordeal, in family and community, and that communication can be a great support in this context.

SL: I found the illustrations in the video well done. Can you tell me about this aspect?

AGV: The creation of the video involved a video production team. This team saw to the editing, directing and narration. We chose images that were quite minimalist, with soft colors. It must be said that we were there throughout the process, because we wanted to ensure the right tone in the voice of the narrator (playing the character of Audrey) as well as in the images.

FT: I would like to acknowledge the contribution of Dr. David Kenneth Wright, who is involved with Palliative Care McGill, a professor at the University of Ottawa and a member of RQSPAL. He helped us find the right words in the English version, helping us to refine the translation of the original text.

AGV: I would also like to point out that the creation of the video began with discussions with two informal caregivers who are partners of the RQSPAL and who shared with us their experience of an incurable disease (specifically their experience of accompanying a sick loved one) and who underlined several issues that they felt were important and that we have highlighted in the video.

FT: This is not the first video that we have produced. You can watch a whole range of videos on topics related to palliative care on our YouTube channel : It is accessible to everyone!

The RQSPAL invites you to share the video, Living With an Incurable Disease, in your networks, institutions, newsletters and on your social media.


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